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Alzheimer's disease and other forms of dementia and memory loss

Stories and essays about living with dementia


What Dementia Feels Like (Jeanette Beebe, AARP, 5-4-22) Four individuals discuss the early stages, including some of the first symptoms they experienced
My Alzheimer's Story (Lisa Burr, Pulse, 5-26-23) I got lost on a bike ride through unfamiliar terrain. I have great difficulty with calculations—leaving tips, counting change or following recipes. I am fifty-nine years old.
Living Well With Alzheimer's Disease (Ashley Milne-Tyte, Next Avenue, 11-12-21) People living with Alzheimer's or other dementias are not their diagnosis — and they're trying to change the narrative through advocacy. Mostacero and LeBlanc are both involved with a new nonprofit, The National Council of Dementia Minds, which is led by people living with dementia. That realization that the person is "still there" and living a full life is something registered nurse Melissa Harris says more people in the medical community need to think about. "Being in research, we don't focus on the lived experiences of the person being diagnosed. We focus on symptoms and what that's like for the care partner," she says.


How People With Dementia Make Sense of the World (Dasha Kiper, The Atlantic, 3-7-23) The human brain has a way of creating logic, even when it’s drifting from reality. Many people with dementia experience occasional delusions and hallucinations, but relatively few become as fixated as Mitch did on the idea that a spouse is an imposter.
     'For caregivers, the idea of a “real self” can be a double-edged sword. If, on the one hand, it encourages us to argue with afflicted loved ones in the hope of breaking through to their “real selves,” it can also be a source of great frustration. If, on the other hand, we start to doubt the existence of an essential self, how can we account for the person we’re caring for? Who is it that we are suffering and sacrificing for?'

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Alzheimer’s: Remembering what we’ve forgotten (Jess Sellers, an essay in Al Jazeera, 5-9-21) What happens when we move away from the shadow of Alzheimer’s to a world we remember, even if for a moment? One of several wonderful essays Al Jazeera has published on the topic.
---What will you remember at the end of your life? (Jess Sellers,Al Jazeera, 3-6-20) A therapeutic musician finds that while the details of end-of-life memories may differ, the themes are often the same.
---The dark road of dementia (Amy Doyle, Al Jazeera, 2-2-20) On a car ride home, a woman thinks she is being followed, only to find an unexpected driver in the car behind her.
---‘If she never remembered me again’: Loving someone with dementia (Tamara Gane,Al Jazeera, 3-29-20) ‘I imagined there were thousands of such thoughts in that room, clinging to the ceiling like helium balloons.’
---Dying of loneliness: How COVID-19 is killing dementia patients (Allison Griner, Al Jazeera,10-22-20) Elderly people living in care homes are not just dying from coronavirus; they are dying because of the response to it.

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About New York; Lost and Confused in the Backyard, Central Park (Dan Barry, NY Times, 4-5-06). Tom and Sandra McCormack, a love story.
Where a Thousand Digital Eyes Keep Watch Over the Elderly ( Ben Dooley and Hisako Ueno, NY Times, 2-2-22) As Japan rapidly ages, it is envisioning fundamental changes, even in infrastructure. Is electronic surveillance an answer to its epidemic of dementia? Japan has the world’s highest proportion of people with dementia, at about 4.3% of the population, according to an OECD estimate.
This Can Be Worn Again: Dementia and Dressing (Melanie Bishop, Next Avenue, 7-27-22) When it became difficult for her mom to think sequentially, the act of getting dressed, or having clothes washed, ended in frustration.
Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no. (JoNel Aleccia, WashingtonPost, 1-18-20) In 2018, after two brain hemorrhages, Susan Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold ­hand-feeding and fluids at the end of life to avoid the worst ravages of the disease. In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary. No provision exists, the letter said, for “decisions to refuse food and water.” See also Advance Directive for Dementia (End of Life Choices) An Advance Directive for Receiving Oral Food and Fluids in Dementia (for New York)
Dementia Values & Priorities Tool (Compassion & Choices) A tool to help you identify your personal values and care wishes so that you stay in control of your life. Identify your personal values and provide clear care instructions to your loved ones as you deal with a dementia diagnosis. "At least eight major hospice networks will allow individuals to forgo treatment" with this process.

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Dementia Letters Project Kathryne Fassbender, founder of Dementia Letters Project, invites you to write a letter—addressed to “yourself, your family, dementia, to a loved one with dementia, the community, God, anyone, everyone”—sharing your dementia-related story.
The Effects of the COVID-19 Pandemic on the Lived Experience of Diverse Older Adults Living Alone With Cognitive Impairment (Elena Portacolone et al., Gerontologist via PubMed, 2-23-21) Even before the COVID-19 pandemic, older adults with cognitive impairment living alone (an estimated 4.3 million individuals in the United States) were at high risk for negative health outcomes. There is an urgent need to learn how this population is managing during the pandemic. Qualitative analysis of transcripts revealed 5 themes: (a) fear generated by the pandemic, (b) distress stemming from feeling extremely isolated, (c) belief in misinformation, (d) strategies for coping during the pandemic, and (e) the importance of access to essential services. Read the article here.
Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer’s (Tara Bahrampour, WaPo, 2-21-19) Tom Misciagna and his wife, Peggy, have a nickname, Ollie, for Alzheimer’s, the disease Tom was diagnosed with seven years ago at 57. Ollie is a presence they didn’t invite into their lives, but they’re making room — and having fun — with him
Black Dementia Minds See Teepa Snow talking to people about living with a brain change you can't fix, and living in a community that doesn't like to talk about all that stuff: What is different about being black and having dementia.

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Lifestyle guru B. Smith has Alzheimer’s. Her husband has a girlfriend. Her fans aren’t having it. (Lavanya Ramanathan, WaPo, 1-28-19) B. Smith's illness was taking a toll on her husband. Then he found another love. Dan Gasby says his relationship with another woman helped him become a better caretaker to his wife who has Alzheimer’s. "That approach — giving the illness a nickname, smoothly zigging after hitting a zag — puts the Misciagnas in a growing camp of people determined to approach dementia care differently, coming at it with a sense of openness, playfulness and even wonder. It is in stark contrast to earlier generations of Alzheimer’s patients and their caregivers, who saw the disease as something to be hidden. "
Help Wanted: Other Woman, by Alix Kates Shulman (the author’s 79-year-old brain-damaged husband believes he is having an affair with his caregiver—why else would she hold his hand when they go out?)
A Home for Mom (Katharine A. Díaz, AARP, 7-27-16) "Mom and I are four months into our new reality, and I'm still not sure who feels more traumatized — she or I. After six years of living with me, she recently moved into a "home." She's 97 and has Alzheimer's disease." Struggling to stay true to myself through the stages of caregiving. A powerful story.
Shopping for Antiques, Finding My Mother (Heather Sellers, Opinionator, NY Times, 5-14-15) A moving piece and one that captures the feel of being the daughter of a woman with dementia.
What Alzheimer’s Feels Like from the Inside (Greg O'Brien, Nautilus, 12-10-15) An investigative reporter chronicles the progression of his own disease. See also his book: On Pluto: Inside the Mind of Alzheimer's. Here's video of an interesting interview (Maria Shriver, NBC News, 8-13-14).
I Still Remember Love (Trish Vradenburg, Huff Post, 5-7-15)

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I’m documenting my own Alzheimer’s disease while I still can (Greg O'Brien, WaPo, 4-13-16). I fear the day when I put my fingers on the keyboard and don’t know how to write anymore. Greg is featured in the NOVA documentary Can Alzheimer's Be Stopped?
If You Have Dementia, Can You Hasten Death As You Wished? (Robin Marantz Henig, All Things Considered, NPR, 2-10-15). Part of what happens in a dementing illness is that the essential nature of the individual shifts. Listen or read transcript.
Arts allow Alzheimer's patients to live in the moment (Mary Brophy Marcus,USA Today)
Alzheimer's Project shown on HBO (this series, appearing on HBO in May 2009, can also be viewed free online at this link).
Coping with Aging’s Costliest Challenge (Donna Rosato, Money, 11-30-15) When someone you love has dementia, the experience can be heartbreaking—and the expenses enormous. Step-by-step advice on how to manage your family’s finances while providing the best care.
Dementia Patients Are Nursing Abandoned Kittens Back to Health (Jessica Mattern, Country Living, 11-21-16) Dementia patients do not lose their capacity to love, and abandoned kittens serve a fulfilling role in these
HBO's Alzheimer's Project (this excellent series, being shown on HBO in May 2009, can also be viewed free online.
Helpguide, a general site but with material on dementia care
How storytelling can help dementia patients (links to several articles, video)
In Grief, As In Life, We Are All Different (Priska Neely, NPR, 3-10-11, about Rachel Hadas's grief as she watches her husband's decline into dementia).
We Are Entering the Age of Alzheimer's (Kent Russell, New Republic, 9-2-14). A long story and one of the best I've read on the subject--especially about what to expect. A fascinating look at a very different care site for Alzheimer's, in Amsterdam. Here's his Alzheimer's Reading List.

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What Watching My Granddad Spiral into Dementia Has Taught Me (Lauren O'Neill, Vice, 8-3-15) "In general, you gradually get worse at doing anything at all for yourself, turning previously simple daily tasks like going to the toilet and getting dressed into missions requiring approximately the same amount of organization and personnel as a moon landing. You lose your memory, to the extent that you start to forget some words. Eventually, you even forget how to move, and become bedbound. After that, your immune system packs in, and once that happens it's kind of game over. Dementia, one; you, very much nil."..."Before necessarily succumbing to it, those who are unlucky enough to end their days with dementia usually go to live in nursing homes, because they need the kind of specialist, around-the-clock care that most families just can't provide."
When Mom Has Alzheimer's, A Stranger Comes For Christmas (Vanessa Rancano, Shots, NPR, Morning Edition, 12-21-15). Listen or read. "Caring for Helen as her mind deteriorates has never been easy for Terry and Mary, but the holidays make things harder. They have to strategize about how to celebrate without disrupting Helen's routine. They struggle with how to prepare relatives for Helen's inevitably worse condition and brace for the anger and disappointment they've come to expect when fewer friends turn up every Christmas

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Caring for people with dementia

Do you know the names of your parents' doctors? Their health insurance policy numbers? Take time now to gather these and other essential details about your elders' health. Provide your own, in case you begin developing dementia.
Your Conversation Starter Kit: For Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia (The Conversation Project)
Brain Changes (YouTube video of Teepa Snow's wonderfully clear explanation of what happens when someone has dementia. Start here! 13.5 minutes) "It's important to understand the job of the brain because it is the guiding system, the maintenance system, and the managing system of the body. Learn more about the role of the limbic system, the prefrontal cortex, the sensory motor strip, and the importance of the occipital lobe for seeing and doing. It is estimated that with most dementias the brain shrinks one third of it's original size causing many changes in structural and chemical ability. Dementia is not a memory problem, it means brain failure and causes many changes in structural and chemical function." (This and other articles here make clear that although memory loss is the so-far-unfixable feature of Alzheimer's, other losses and problems associated with the disease can often be mitigated.)
• ****How to Talk with Someone with Dementia Diane Waugh's excellent, persuasive, extremely helpful talk not only about how to talk to someone with dementia but why.  (For example, do not ask a person with short-term memory loss a short-term memory problem -- such as, What did you have for breakfast? --and realize that their long-term memory may still be vivid.)  The examples, strategies, and tips she presents are invaluable to caregivers, family, and friends. See also How to Talk to Someone with Dementia, Alzheimer's, or Memory Loss (MMLearn.org) Much of the same advice, in print, and with a link to video of Waugh's talk.
Navigating the Health Care System (Liz Seegert, AlzLive.com) Click on U.S. or Canada to get to the appropriate series. Under U.S. stories headings for series include Welcome to the United States; The Impact of Diagnosis; Get With the Program; Who's Who on the Care Team; The Relievers; Call on Nurse Practitioners; The Key Therapists; No Place Like Home. Links to lots of practical articles.<
Alzheimer’s and Dementia Person-Centered Symptoms Tracker (Biography Based Care, Alzheimer's Alive, 8-15)
A loved one's dementia will break your heart. Don't let it wreck your finances (Sarah Boden, Shots, Health News from NPR, 6-13-23) Sharon Gwinn's "husband was still working as a hospital orderly when he started to spend money erratically. One Thursday night he racked up a $3,000 tab at a Pittsburgh cop bar, buying rounds for strangers. Gwinn says she discovered his splurge — something totally out of character for him — when her credit card was declined at the grocery store. That's when she realized that her husband was showing the first of a series of cognitive changes that eventually would be diagnosed as Lewy body dementia.
          A cluster of studies point to financial problems as a possible warning sign — rather than just the fallout — of cognitive decline. It's important to put financial guardrails in place in advance. To avoid surprises, some financial advisers recommend having open conversations about money with loved ones and setting up tools that track your finances and flag any unusual patterns.

      In 2020 the National Institute on Aging highlighted the work of SilverBills, a concierge service that makes sure bills are paid on time and inspects invoices for fraud and errors. The Cetera Financial Group has partnered with Carefull, an online company that monitors for fraud and financial errors, while also providing identity theft insurance. EverSafe also scans accounts for unusual spending, such as the huge bar tab that Sharon Gwinn's husband tallied.
Legal and Financial Planning for People with Dementia (National Institute on Aging, NIH)
#Dementia TikTok Is A Vibrant, Supportive Community (Consider This, NPR, 10-12-22) Check out momofmymom
Family Caregivers Find Support on #dementia TikTok (Kate Wells, Michigan Radio and KHN, 10-22-22) Watch the videos on #dementia (on TikTok)
Sharing Alzheimer's diagnosis: Tips for caregivers (Mayo Clinic)When a loved one develops Alzheimer's, knowing how and when to open up about it to others can be difficult. Tips for sharing an Alzheimer's diagnosis.
Wandering Behavior: Preparing for and preventing it (Alzheimer's Association--some good, very practical suggestions)
What’s the best way to talk to someone with Alzheimer’s? (Susan Berger, WashPost, 5-30-16) Very practical.

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Dancing with Rose: Finding Life in the Land of Alzheimer's by Lauren Kessler. Documents a journalist's work as a caregiver for Alzheimer's patients after the disease claimed her mother's life, a process during which she came to deeply respect and admire the contributions of a care facility's overworked, underpaid, and humor-possessing employees.
The Power of Snow by Ann Silversides (AlzLive). "Teepa Snow, the horse whisperer of dementia, has created a powerhouse of a training infrastructure – workshops, DVDs, streaming video – that takes caregivers where they actually need to go." "You can change the environment, the task, or your own behaviors." 'The Gems system describes six stages of dementia and, for each stage, sheds light on what people with dementia are experiencing, and on appropriate caregiving strategies. Sapphire is the first stage, characterized by changing abilities that are creating new challenges in life, and caregivers should “allow processing time and discuss, not demand.” The last stage is Pearl, where the individual is “hidden in a shell, immobile, reflexive” and caregivers should use a soft voice and interact with “slow rhythmic movement.”' Hear brief segments of Teepa's talks on Teepa's own YouTube channel (free). Or Order DVDs.
Alone Together (PDF, Meryl Comer, AARP, Oct.-Nov 2014 issue) When a spouse develops Alzheimer’s disease, the painful goodbye can last decades. A frank, moving, and eye-opening story about the daunting reality of caring for someone with Alzheimer's. "I want to be part of the last generation to be trapped by a loved one's diagnosis." From the book Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer's by Meryl Comer. “No silver linings, no phony homages to ‘spiritual growth.’ Meryl Comer writes the unvarnished reality of being exposed as a wife, daughter, caregiver, and potential Alzheimer’s victim herself. Admire her bravery and honesty and applaud her for taking away some of the loneliness of the long distance caregiver.” — Ellen Goodman
Living with Dementia (HelpGuide) Tips & strategies for coping for both you and your family.
What’s the best way to talk to someone with Alzheimer’s? (Susan Berger, Washington Post, 5-30-16). Sidebar: A few tips from experts for interacting with Alzheimer’s patients In brief: There is no point debating a faulty fact or memory. Embrace their reality. If they ask about someone who is dead, don't inform them the person is dead (certainly not in a criticizing way): to them, having forgotten it, it will be bad news all over again. Don’t give a lot of instructions, but do ask the patient to help--for example, to fold the laundry. Reintroduce yourself every time you enter the room, if you haven't seen each other for a while. Do not be upset if they don't recognize you or say something that doesn't make sense. Do not quiz to test their memory. It's upsetting, if they can't remember. Use simple words, in a calm voice. And more...

Loving a Parent Who Shouldn’t Be Driving (Marcia Frellick, GoodRx, 1-12-22) After someone is diagnosed with dementia, it is time for them to stop driving. It may not be easy to persuade them to do so. Read Brenna Solop's story, The Day I Took Away My Dad’s Car Keys "I saw it as keeping him safe—he saw it as stealing his freedom." When all else fails, bring your physicians into the conversation. They may not realize their patient is still driving.
Love Is the Key (Ann Beach, Pulse, 12-30-22) When he first asked me to take him to the local hobby store to buy models, he’d been living with vascular dementia for more than six years. He didn’t read the detailed instructions that came with each model; instead, he dug deep into what memories he had left. Our conversations about this were always the same. “The model company made a mistake,” he’d say irritably. “They didn’t put all the pieces in the box."
Banish Caregiver Burnout by Keeping a Loved One With Dementia Engaged (Lee Woodruff, AARP, 4-13-21) 18 activities to keep a loved one with dementia engaged.

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Jane Austen’s Guide to Alzheimer’s (Carol J. Adams, Op Ed, NY Times, 12-19-15) How the novel “Emma” helped me cope with my mother's decline.
Life Lessons From Dad: Caring for an Elderly Parent (Dave Shiflett, Wall Street Journal, 6-27-14). "..one of the most important lessons we learned from this experience: Never take friends for granted. Among our most cherished memories are of friends who stood with us, whether by bringing over a meal, letting us use a second home to get away for a few days or simply asking how things were going."
Hospital Runs a Pub in Their All-Male Dementia Wing to Promote Socializing and Prevent Sundowning (Elizabeth Nelson, The Alzheimer's Site) "It features non-alcoholic beer, so nobody gets drunk or has to worry about their medications not mixing well with their favorite drink, and the darts are plastic and can’t hurt anyone. And since they don’t have to leave the hospital to get to it, there’s no need to arrange for transportation or check in and out of the hospital."
My Past Is Now My Future: A Practical Guide to Dementia Possible Care by Lanny D Butler and Kari K Brizendine, which came highly recommended by my friend Betsy, who loved and enjoyed the last ten years of her husband Ralph's life, when he had Alzheimer's, and this book helped make that possible.
How to Identify and Address Apathy Caused by Dementia (Baylor University) See also Apathy in Alzheimer's disease (Current Opinion in Behavioral Sciences) Apathy is the most common neuropsychiatric symptom in patients with Alzeheimer’s disease.
Living Well With Dementia: a personal journey (a prize-winning 25-minute radio documentary Living Well with Alzheimer's, an award-winning radio documentary (23 mins., free online) by journalist Pieter Droppert (whose mother developed dementia) about how a Liverpool residential facility for people with Alzheimer's figured out how to help stimulate memory and make life more enjoyable for residents -- with things like color-coded signs on garden paths (red is the last color we lose), reminiscence therapy, etc. "One thing I do wish I'd done is recorded more of my mother's voice and the family stories and memories of her life. We should all create an oral history while we can, as who knows where the journey of life will take us." Listen also to Raising Dementia Awareness on Merseyside
Living Well With Dementia (free online 90-minute video of webinar, Navigating Aging, KHN Conversation on Living Well With Dementia, Kaiser Health News, 2-13-18) Topics covered by this panel of experts include understanding the stages of dementia from a medical, social, psychological and environmental perspective (it’s not just memory loss); how to find help; how to manage difficult behaviors; and understanding medications for people with dementia.
The Longest Loss: Alzheimer's Disease and Dementia (YouTube video, 1 hour +, Hospice Foundation of America) This program explores the numerous and nearly constant losses both before and after death, associated with Alzheimer's Disease and dementia. First-hand testimonials by family caregivers and by people with early stage Alzheimer's combine with panel discussion by recognized experts in grief, loss and dementia care, to provide insight, coping strategies and caregiving tips useful for anyone whose life is touched by Alzheimer's disease or other forms of dementia. Begins with brief overview of Alzheimer's and various other forms of dementia, such as Lewy Body dementia.

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Sweethearts Forever. Then Came Alzheimer’s, Murder and Suicide. (Corina Knoll, NY Times, 12-29-19) “They were absolutely soul mates.”
Pass on the Memories A weekly scheme, officially launched by Everton (UK) legend Graeme Sharp at Goodison Park, uses a range of interventions, including sporting reminiscence workshops, custom-made life story memory books and calendars, day trips to local places of interest and social activities, to help people to share important memories and create new ones.
We Are Entering the Age of Alzheimer's (Kent Russell, New Republic, 9-2-14). A long story and one of the best I've read on the subject--especially about what to expect. A fascinating look at a very different care site for Alzheimer's, in Amsterdam. Here's his Alzheimer's Reading List.
Podcasts about dementia (Family and Family Resources, Johns Hopkins Memory and Alzheimer's Treatment Center)
The Comforting Fictions of Dementia Care (Larissa MacFarquhar, A Reporter at Large, New Yorker, 10-18-18) which appeared in the print edition of the New Yorker as "The Memory House."(A long read.) Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience. 'Doctors have observed that there seems to be a “reminiscence bump”: that people whose memories are failing tend to remember the period of their late childhood and early adulthood more vividly than other stages of their life.' Discussion of the practical realities (good and bad) of lying to dementia patients. How to deal with patients who want to "go home." 'The guiding principles at De Hogeweyk [a model nursing home for people with advanced dementia, southeast of Amsterdam, "both the source and the most fully realized version of many of the ideas in dementia care that are now being experimented with in Chagrin Valley and around the world"] are familiarity, comfort, like-mindedness.' A long and thoughtful overview of approaches to acknowledging or fudging reality for adults with dementia.
Staying Safe: Steps to take for a person with dementia (PDF, Alzheimer's Association)
Study Finds Wives Often Struggle With Stepchildren Over Caregiving (Jan Hoffman, NY Times, Health, 10-15-13). Follow this link.

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This former journalist's 'weird' idea is transforming the care of dementia patients (Tara Bahrampour, The Age, 12-16-16) Same article in Washington Post (Seeing Behind Dementia's Veil) read "Professionally written profiles are opening caregivers' eyes to the former lives of their memory patients." Jay Newton-Small knew caregivers in a Maryland care facility were never going to read the 20-page questionnaire she was given to fill out, so she wrote her father's story for them, and they loved it--it helped having the context. "Working with two partners and hiring freelance journalists to conduct interviews and gather photos and other media, her organization, MemoryWell, has provided profiles of a dozen people at three facilities, and is piloting with five more organizations." Not only do the caregivers learn from the stories, but so do the people the stories are about--for whom the photos and video (when that is the medium) are particularly important. Best of all is when you get the person's cooperation on the life story before they have begun losing their memories. (I speak from experience.) See Donna Weiss's letter to WaPo editor: Read dementia patients their life stories, and watch what happens.
Tips for Dealing with People Who Don’t Know They Have Dementia (Sarah Stevenson, Senior Living Blog, A Place for Mom, 1-4-14) It's called Anosognosia.
Top Mistakes We Make With Dementia Patients (Steve Slon, Be Close, interview with Teepa Snow). Part 2 of the interview: How Dementia Affects the Five Senses. (That's why she keeps telling you you're not following her recipe right! She's lost some of her ability to taste.)
Home Modification Tips to "ease the burden on the caregiver and increase the independence, safety and dignity of the person with dementia." (Fisher Center for Alzheimer's Research Foundation)
As Rural America Faces an Onslaught of Alzheimer's Disease, States Look to Radical Ways to Help (Jessica Wapner, Newsweek, 6-1-17) "In rural areas, the rising proportion of older Americans means an accompanying rise in people with dementia. And these counties do not have the money, the professionals or the services to address the coming tidal wave of cognitive decline....But New York has a radical plan to save the caregivers by helping them take a break. Or have a shower. Or run errands. Or maybe just nap."
5 Things I’m Glad I Did for My Dad With Alzheimer’s Disease Amy Goyer, AARP, 9-20-18) As a caregiver the choices are many. Here’s what worked for us.
Unlocked and Loaded: Families Confront Dementia and Guns (JoNel Aleccia and Melissa Bailey, KHN, 6-25-18) As America copes with an epidemic of gun violence that kills 96 people each day, there has been vigorous debate about how to prevent people with mental illness from acquiring weapons. But a little-known problem is what to do about the vast cache of firearms in the homes of aging Americans with impaired or declining mental faculties. Look at the numbers in this piece.
Caregiver.com (with special attention to Alzheimer's, bipolar disorder, schizophrenia. long-term care, and medication management)
Sample medication log
Traveling With Your Loved One (AARP) Keys to a smooth trip: research, planning and building in downtime. Excellent practical tips (almost a checklist).

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1 in 4 Family Caregivers Is a Millennial (David Frank, AARP, 5-22-18) Many find it difficult to balance responsibilities at work with those at home
The Amazing Village in The Netherlands Just for People with Dementia (Twisted Sifter, 2-4-15)
Creating Moments of Joy: A Journal for Caregivers (4th edition, Jolene Brackey). "When a person has short-term memory loss, his life is made up of moments. But if you think about it, our memory is made up of moments, too. We are not able to create a perfectly wonderful day with someone who has dementia, but it is absolutely attainable to create a perfectly wonderful moment; a moment that puts a smile on their face, a twinkle in their eye, or triggers a memory. Five minutes later, they won't remember what you did or said, but the feeling you left them with will linger."
Ten Tips for Communicating with a Person with Dementia (Family Caregiver Alliance)
Alzheimer's Association 24/7 Helpline: 1.800.272.3900
ARCH National Respite Network provides links to local and state respite resources for caregivers as well as training for professionals. Download "A Consumer Guide for Family Caregivers." See National Respite Locator
Understanding Risk Factors for Dementia (Alzheimer's Society, UK)
Signs and symptoms of Alzheimer’s disease (Alzheimer's Foundation of America)
Sample medication log
Inside the Brain: An Interactive Tour (Alzheimer's Association) Explains how the brain works and how the disease affects it. (Multilingual)
Family Caregiver Toolbox (Caregiver Action Network)

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Alzheimer’s caregivers guide (many tips also helpful for people with other forms of dementia or traumatic brain injury)
Alzheimer’s Caregiver Guide (National Institute on Aging)
Preparing Your Home for a Loved One with Alzheimer’s: A Caregiver’s Guide (Redfin, Sept. 2016)
Alzheimer's Caregivers
Alzheimer's: When to stop driving (Mayo Clinic) If your loved one has Alzheimer's, he or she may not be safe on the road. Explain the risks — then provide other ways to get around. See also Alzheimer's Association page on "when to stop driving" contracts.
Alzheimer's: Consider options for long-term care (Mayo Clinic) Eventually, most people who have Alzheimer's need outside care. Consider the options, from respite care and adult day services to assisted living and nursing home care.
Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and frontotemporal dementia or FTD)
Dementia Care Dos & Don’ts: Dealing with Dementia Behavior Problems (Sarah Stevenson, Senior Living Blog, 1-14-16)
Find an Alzheimer's care facility (AgingCare.com database, searchable by state, for USA)
Dementia Caregiving 101 (sisters Paula Farris and Lanette Stultz share what they learned caring for their mother. 

• Medications for Memory Loss (Alz.org)
Online Lessons in Dementia Management (Judith Graham, New Old Age, NY Times,9-5-13). Professors at Johns Hopkins University offer an online course in coping with dementia: Care of Elders with Alzheimer's Disease and other Major Neurocognitive Disorders (Nancy Hodgson, PhD, RN and Laura Gitlin, PhD, via Coursera)
Guide to Patients With Dementia and Alzheimer’s for Nurses and Caregivers (Incredible Health). Geared to nurses.
Travel Safety (Alzheimer's Association)

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Challenging the "tragedy" narrative for dementia

"Perhaps one of the gifts of old age is that nothing stands between us and what we see." ~ May Sarton, Kinds of Love

 

Normality is a paved road: It's comfortable to walk, but no flowers grow.
--- Vincent van Gogh


Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer’s (Tara Bahrampour, Washington Post, 2-21-19) Giving the illness a nickname (Ollie), smoothly zigging after hitting a zag — puts the Misciagnas in a growing camp of people determined to approach dementia care differently, coming at it with a sense of openness, playfulness and even wonder.
A French Village’s Radical Vision of a Good Life with Alzheimer’s (Marion Renault, New Yorker, 11-23-22) Every resident of the Village Landais has dementia—and the autonomy to spend each day however they please. "Its residents can come and go from their homes as they please, whether through the unlocked door or through a window. They can wake and shower at their leisure; they can shout, pilfer sweets, make tea at 2 a.m., sweep with the broom upside down, and handle sharp knives in the kitchen....Most nursing homes devote themselves to the narrow and perfectly reasonable goal of keeping residents safe and healthy. The Village Landais contemplates a broader question: What might a good life with Alzheimer’s look like?"
In Love: A Memoir of Love and Loss by Amy Bloom. Diagnosed with Alzheimer's a few years before his death, Amy's husband made her promise that when the time came and he no longer knew her or was incapacitated, she would help him die. They chose Dignitas, flew to Switzerland, and she was with him when he died. Her account is both moving and very practical. Not everyone qualifies for Dignitas, for example, or can afford it. And there are problems getting the drugs you might need. But she explores options and explains why she rules out the ones she rules out, which is surely helpful.

     "Bloom’s unfiltered glimpse into a working marriage is both a touchingly besotted portrait of her husband and a wrenching account of his gradual retreat from her. Their resolute approach to his death yields a story pulsing with raw life.”—Alison Bechdel, author of Fun Home
      “This is a beautiful, necessary book for anyone who loves their partner deeply and wonders and worries what the end might be like: poignant, kind, funny, and ultimately redemptive. One cries a lot, in the best of ways.”—Alain de Botton, author of The Course of Love
Positive age beliefs protect against dementia even among elders with high-risk gene (Becca R. Levy, Martin D. Slade, Robert H. Pietrzak, and Luigi Ferrucci, PLOS One, 2-7-18) One of the strongest risk factors for dementia is the ε4 variant of the APOE gene. Yet, many who carry it never develop dementia. The current study examined for the first time whether positive age beliefs that are acquired from the culture may reduce the risk of developing dementia among older individuals, including those who are APOE ε4 carriers. The results of this study suggest that positive age beliefs, which are modifiable and have been found to reduce stress, can act as a protective factor, even for older individuals at high risk of dementia.
How People With Dementia Make Sense of the World (Dasha Kiper, The Atlantic, 3-7-23) The human brain has a way of creating logic, even when it’s drifting from reality. Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain by Dasha Kiper. Case histories. ("An elegant, empathetic, immensely informative, and insightful primer for caregivers as they try to navigate the fragmented, skewed world of the cognitively impaired."—Psychology Today)
Dementia Comes 5 Years Later for Some (Judy George, MedPage Today, 7-14-21) A cognitively active lifestyle that involves reading and processing information in old age may delay the onset of dementia in Alzheimer's disease by as much as 5 years, a longitudinal study suggested. "This study provides further support for the concept of cognitive reserve, where genetic and life exposures allow some people to cope better than others with age- or disease-related brain changes," noted Yaakov Stern..."Previous work has suggested many exposures that can contribute to cognitive reserve, including education, aspects of occupational attainment, and late-life leisure activities, along with IQ."
The Joy of Dementia (You Gotta Be Kidding!) (Mary Fridley and Dr. Susan Massad, Confident Voices in Healthcare, 5-29-19) The fear- and stigma-inducing “tragedy narrative” of dementia has negatively shaped how those living with dementia are related to, and limits the possibility of growth and creativity for everyone touched by dementia.
Momentia Momentia (based in Seattle) is a grassroots movement empowering persons with memory loss and their loved ones to remain connected and active in the community. The Puget Sound region is home to a variety of dementia-friendly opportunities offered by a growing number of community members and organizations.
Disrupt Dementia (Changing Aging with Dr. Bill Thomas) Exploring music, resilience and human connection
Living in the Moment (Dementia Care Central)
Alive Inside: A Story of Music and Memory Documentary follows social worker Dan Cohen as he fights against a broken healthcare system to demonstrate music's ability to combat memory loss. See more films, documentaries and 'shorts' about dementia and links about music, mood, and memory 
Send in the Clowns: Changing the Face of Dementia Care (Dr. Pia Kontos, International Network for Critical Gerontology, 10-28-16) A distinctive feature of elder-clowning is their reliance upon biographical details to tailor their interactions to the uniqueness of each individual resident. Elder-clown programs are prominent in Australia, Scotland, and more recently have been implemented in some long-term care homes in Toronto, Ontario.

 

 

      "Aging is a challenge, not an automatic activity. You go through passages, from one state to another. You become somebody. Faced with a challenge, you choose to live through the obstacle rather than avoid it. You make the decision to be in process and to participate actively….

     "Your very purpose in life is to age, to become what you are; essentially, to unfold and let your inborn nature be revealed. You let your ageless self, your soul, peek out from behind the more anxious, active self."
From Thomas Moore, Ageless Soul: The Lifelong Journey Toward Meaning and Joy.

 

H/T H.R. Moody, Human Values in Aging Newsletter, 7-1-21, for many of these links and extracts.

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Who gets dementia? The numbers


Alzheimer's Facts and Figures (Alzheimer's Association)
Study of 1.6 Million Veterans Links Neighborhood and Dementia Risk (Michele Sullivan, MedPage Today, 7-20-23) Despite equal access to care, health inequalities persisted in disadvantaged areas. Significant differences in dementia incidence emerged based on neighborhood deprivation, a study of 1.6 million U.S. veterans showed. Using 9-digit zip codes, the investigators linked each veteran's residential location to the national Area Deprivation Index (ADI). This tool contains composite measures of neighborhoods integrating several social determinants of health, including the average education level of local residents, employment and housing data, and poverty levels.

      "Living in the poorest neighborhoods is associated with a higher risk for brain changes related to Alzheimer's disease, such as build-up of amyloid," Claire Sexton told MedPage Today. "For example, area deprivation has been associated with poor nutrition, low levels of physical activity, sleep disruption, and higher levels of air pollution, all of which have, in turn, been associated with an increased dementia risk."
Dramatic Increase in Latinos with Alzheimer's Projected, Along with Costs (Ericka N. Hernandez, NBC News, 9-21-16) According to the report Latinos & Alzheimer's Disease: New Numbers Behind the Crisis (PDF), "by 2060 as many as 3.5 million Latinos are projected to develop Alzheimer's disease, which is a growth of 832 percent."
Midlife Activities Linked to Alzheimer's, Dementia (Judy George, MedPage Today, 2-20-19) Engaging in mental or physical activities dropped dementia risk 44 years later. "Women who frequently engaged in cognitive activities -- including artistic endeavors, reading, needlework, or social clubs -- when they were ages 38 to 54 years were 46% less likely to develop Alzheimer's disease in late life and 34% less likely to develop dementia...Cognitive activities include reading a book; visiting a concert, theater or art exhibition; playing an instrument, singing in the choir, or painting; doing needlework or gardening; being a member of a club, or on the board; attending church.

     "And women who were physically active were 53% less likely to develop dementia with cerebrovascular disease and 57% less likely to develop mixed dementia... highly fit women were nearly 90% less likely to have dementia decades later."  Physical activities include walking, gardening, bowling, or biking (light activity); intense activity includes running or swimming or competitive sports; being sedentary and watching television or movies was inactive. Activities were self-reported.
Dementia, Poverty & Homelessness Intersect Leaving Black Elders’ Needs Unmet (Part 1, New American Media). See also Part 2.. Two articles adapted from a longer series, which Charlene Muhammad wrote for the Los Angeles Sentinel with support of a journalism fellowship from New America Media, the Gerontological Society of America and the Retirement Research Foundation.
African Americans are more likely than whites to develop Alzheimer’s. Why? (Marita Golden, WaPo, 6-1-17) Though Gwendolyn Williams ultimately didn’t qualify for a Hopkins trial, researchers fervently wish they could find more people like her who are at least willing to try. That’s because, as scientists scramble to find new treatments and maybe someday a cure, African Americans are nearly invisible in clinical Alzheimer’s trials: Despite representing more than 20 percent of the 5.5 million Americans who have the disease, African Americans account for only 3 to 5 percent of trial participants, according to researchers. To partially explain the racial disparity in the rates of dementia, researchers point to factors such as cardiovascular diseases and diabetes that are more common among African Americans and Hispanics than among whites. Chronic medical issues such as obesity, hypertension and high cholesterol play a role. Some studies cite higher rates of poverty, with all its associated consequences — bad housing, poor education, inadequate nutrition and health care — as contributing factors. The stress of discrimination has also been cited in some studies.

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Alzheimer's disease

and the search for treatments 
Scroll down for section about progress on experimental drugs

 

Rule #1: Don't lose your sense of humor. Start here: Where's Buddy? (Beth Rubin visits her uncle, posted on her blog, Beth Bad and Beyond) "Truth is, he's a few fries short of a Happy Meal."


Large Share of Alzheimer's, Dementia Cases Tied to 8 Modifiable Risk Factors (Judy George, MedPage Today, 5-9-22) Eight modifiable risk factors -- midlife obesity, midlife hypertension, physical inactivity, depression, smoking, low education, diabetes, and hearing loss -- were linked to more than one in three cases of Alzheimer's disease and related dementia in the U.S., a cross-sectional analysis showed.

     "The factors most prominently associated with Alzheimer's and dementia were midlife obesity, physical inactivity, and low educational attainment. (10 years ago, they were physical inactivity, depression, and smoking.) 

    "Associations with Alzheimer's and dementia risk also differed by race and ethnicity. Among Black (21.7%), American Indian and Alaska Native (20.3%), and white (17.3%) populations, midlife obesity showed the strongest association with Alzheimer's and dementia. Among Hispanic individuals, low educational attainment had the strongest tie (26.5%), while in Asian participants, physical inactivity topped the list (9.5%)."
Navigating the Local Eldercare System: A First Person Account (Ann Cochran, Bethesda Magazine, May-June 2015) As my father's mental and physical health began to decline, I found myself in the very confusing and complicated world of eldercare
Alzheimer’s Disease Facts and Figures
Inside the Brain: A tour of how the mind works (Alzheimer's Association, Part 1, Brain Basics) An excellent illustrated explanation of things you might not even know to know. Click on the hotspots to discover how your brain works and the effect dementia has on it. Part 2, Alzheimer's Effect and additional resources.
Brain Health Registry If you are 18 years or over, you can help the Brain Health Registry speed up the discovery of treatments for Alzheimer’s, Parkinson’s, depression, PTSD, and other brain disorders. It takes just a few minutes to get started. For most people, participation takes less than three hours per year.

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FastStats data on Alzheimer's in the United States
Wandering and Getting Lost (Alzheimer's Organization). Six in 10 people with dementia will wander. Tips to prevent wandering. Make a plan. Recommended devices:
---MedicAlert® + Alzheimer's Association Safe Return®
---Comfort Zone and Comfort Zone Check-In
Alzheimer's Navigator (map out a plan to approach Alzheimer's)
Intimations of the Great Unlearning (a long, thoughtful piece by Gisela Webb about Alzheimer's--Memory and Being, On Being with Krista Tippett) What remains after the unraveling of mind, language, and knowledge in Alzheimer's. "The nature of Alzheimer's decline suggests to me both the reality of the radical impermanence of life (as suggested in the many constantly shifting states and stages of the disease) and the reality of some deeper knowing/knower."

What's the Difference Between Alzheimer's and Dementia? (Robert Stern, Alzheimer's Reading Room)
The new face of Alzheimer’s: Early-stage patients who refuse to surrender (Laurie McGinley, Washington Post, 4-24-23) Rebecca Chopp has mild cognitive impairment (MCI), a condition that involves subtle changes in thinking and memory and that, in most cases, leads to Alzheimer’s dementia, a fatal neurodegenerative disease that affects more than 6.7 million Americans. For the first time, medications are emerging, often amid intense controversy, designed to slow the disease. New blood tests are making it easier to diagnose the ailment. A growing number of studies suggest that lifestyle changes can help keep people in the early stage longer — an approach Chopp has embraced. Besides Alzheimer’s, other causes of MCI include depression, anxiety, medications and stroke. Doctors say it is important to find the cause to determine the next steps.

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Expensive experimental drugs for treating early phases of Alzheimer's disease

Q&A: What to know about new Alzheimer’s drug Leqembi (Liz Seegert, Covering Health, AHCJ, 7-7-23) The FDA granted full clinical approval to Leqembi (lecanemab) on Thursday, July 6, making it only the second new drug approved to fight Alzheimer’s disease and the first to receive full authorization from the agency. This is a useful, lengthy Q&A.
Inside ‘Project Onyx’: How Biogen used an FDA back channel to win approval of its polarizing Alzheimer’s drug (Adam Feuerstein, Matthew Herper, and Damian Garde, STAT, 6-29-21) It was perhaps the most contentious drug approval in decades, shocking drug company executives, insurance companies, and politicians alike. The back-channel relationship between Biogen and the FDA that led to approval of the new Alzheimer's drug, Aduhelm, started earlier and was far more extensive than previously disclosed. Access restricted.

FDA Approves Donepezil Patches to Treat Alzheimer’s-Related Dementia (Joshua Murdock, GoodRx, 3-17-22) Adlarity is a once-weekly patch that’s applied to your skin. Patches are often helpful if you can’t swallow pills or if pills cause bothersome side effects. It's expected to become available in fall of 2022. See also In controversial decision, FDA approves first new Alzheimer's disease drug in nearly 20 years (Jacqueline Howard, CNN, 6-7-21) Part 1: 'We have to really temper expectations.' The US Food and Drug Administration on Monday approved the use of the experimental drug aducanumab, also known as Aduhelm, for early phases of Alzheimer's disease -- despite an FDA advisory committee concluding last year that there is not enough evidence to support the effectiveness of the treatment. The drug was developed for patients with mild cognitive impairment, not severe dementia, and intended to slow progression of Alzheimer's disease -- not just ease symptoms.
---BUT: Will Insurers Pay for New Alzheimer's Drug? (Kristina Fiore, MedPage Today, 6-8-21) The $56,000 annual price tag on the therapy is far higher than the $8,300 estimated by the Institute for Clinical Economic Review (ICER) to be cost-effective, setting the stage for potential insurance challenges. All eyes are on CMS, which could issue a Medicare National Coverage Determination
---Medicare announces coverage of costly Alzheimer’s medication. That could mean high premiums for beneficiaries (Liz Seegert, Covering Health, AHCJ, 6-1-23) The Centers for Medicare and Medicaid Services would also require patients using the drugs to register for the purpose of gathering information on treatment results. All of the study evidence is not yet available — Lilly shared the results via a press release. However, full FDA approval of the drug will probably ensure Medicare changes its stance on paying for anti-amyloid drugs. There are narrow eligibility parameters and a requirement that recipients enroll in an ongoing clinical trial to assess longer term efficacy and safety prior to full FDA approval.
---Part 2: Alzheimer’s drug approved Monday by FDA raises questions for journalists (6-11-21) Since Biogen has argued that longer follow-up was necessary to show its benefit, the question is how long is long enough to determine whether someone taking aducanumab is receiving clinical benefit—or whether someone is taking a very expensive drug they don’t need. And other questions....See more Covering Health stories on Alzheimer's .
Aside from Eli Lilly’s drug, what else is in the Alzheimer’s pipeline? (Liz Seeger and Tara Haelle, Covering Health, AHCJ, 7-14-21) This is part 1 of a two-part package on the pipeline for Alzheimer’s disease drugs. Eli Lilly recently announced that the FDA had granted a breakthrough therapy designation for donanemab, its investigational antibody therapy for Alzheimer’s disease.

       The designation means the FDA will expedite the drug’s development and review because it treats a serious condition, and early evidence has shown enough improvement on key clinical measures compared to other drugs on the market. This should mean it has a good chance of being effective in treating the condition. Donanemab, also called N3pG, is an investigational antibody that targets a modified form of beta-amyloid, aiming to clear out plaques that have built up in the brain.

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Mouse experiments with a decades-old drug suggest a new approach to Alzheimer’s treatment (Megan Molteni, STAT, 10-11-21) A generic drug used widely to treat swelling associated with hypertension and heart failure showed hints in early research that it may also prevent the devastating brain damage of Alzheimer’s disease, a surprising twist that suggests scientists have a lot more to learn about the root cause of the neurodegenerative condition. See also Experimental and real-world evidence supporting the computational repurposing of bumetanide for APOE4-related Alzheimer’s disease (Alice Taubes et al, Nature, 2021)
Another Alzheimer’s treatment takes a different route than the rest (Liz Seeger and Tara Haelle, Covering Health, AHCJ, 7-15-21) Part 2: While the controversy surrounding the FDA’s approval of Biogen’s adumanucab for Alzheimer’s disease continues, several other drug companies are developing their own therapies to prevent or slow the progression of the disease. One of those new drugs, ALZ-801, began National Institute of Aging-funded Phase 3 trials on June 4. Unlike aducanumab or other drug candidates from Eisai, Eli Lilly and Roche, which attack amyloid plaque after it forms in the brain, biotech startup Alzheon, Inc. aims to help people with AD who have two copies of the ε4 allele of the apolipoprotein E gene (APOE4/4), a known risk factor for Alzheimer’s disease. The goal is to prevent plaque from forming in the first place or prevent additional plaque from forming in those who already show clinical symptoms of Alzheimer’s.
FDA approves new Alzheimer’s drug, but controversy persists (Liz Seegert and Tara Haelle, Covering Health, AHCJ, 6-10-21) Part 1 of 2. Drug maker Biogen actually halted its parallel Phase 3 studies, ENGAGE and EMERGE, because they failed to meet their primary endpoints. Those original endpoints were a change in the Clinical Dementia Rating-Sum of Boxes (CDR-SB), which is similar to a composite endpoint because it assesses improvement in multiple different domains. A subsequent analysis of data that trickled in from the ENGAGE trial later showed high doses of the drug may actually slow cognitive decline after all. So Biogen did a 180 and applied for accelerated FDA approval last July, as we previously reported.

          The FDA’s go-ahead was conditional on the company conducting Phase 4 follow-up studies to monitor for serious reported side effects, including brain swelling and bleeding. Most of the scientists who disagree with the FDA’s green light on the drug, including Alexander, have expressed concern that the approval relies only on data from a subset of just two studies. Despite Biogen’s claim that the studies would have met the primary endpoint with a longer follow-up, “this post hoc justification simply cannot replace additional, well-designed, blinded, placebo-controlled randomized trials,” Alexander wrote in May....“Physicians, especially primary care providers, need clear guidelines on who and how to recommend this drug.” Jeste hopes specific clinical practice guidelines will be issued very soon. “They need to know who is most likely, or least likely, to be helped by this drug.”

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We Are a Long Way From an Alzheimer’s Cure (Howard Gleckman, 7-23-14). "Two take-aways from the recently concluded Alzheimer’s Association International Conference in Copenhagen: First, after years of research, we still know remarkably little about what causes dementia or how to prevent or delay it. Second, the dementia establishment . . .is so focused on a cure that it pays too little attention to the immediate needs of those who already have dementia and those caring for them." Gleckman reports on various issues and asks why taxpayers should be financing research for drugs drug companies expect to make huge profits from.
Dementia at Young Ages More Common Than Previously Thought (Judy George, MedPage Today, 7-19-21) Young-onset dementia -- dementia before age 65 -- may be more prevalent than previously thought, a systematic review and meta-analysis showed. Based on 74 studies of nearly 2.8 million people, the global age-standardized prevalence of young-onset dementia was 119.0 per 100,000, corresponding to 3.9 million people ages 30 to 64, reported Sebastian Köhler, PhD, of Maastricht University in The Netherlands, and co-authors in JAMA Neurology. Age-standardized prevalence was similar in women and men, highest in upper-middle-income countries, and highest for Alzheimer's disease, followed by vascular dementia and frontotemporal dementia. "Most dementia care is geared for older patients, and as a consequence, services are rarely available to address the needs of someone diagnosed with dementia in their 50s who has dependent children at home and a spouse who must continue working."
The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades (Sharon Begley, STAT, 6-25-19) “The amyloid hypothesis has been one of the most tragic stories [in] disease research,” said neurobiologist Rachael Neve of Massachusetts General Hospital. Research focused on amyloid, and the development and testing of experimental drugs targeting it, have sucked up billions of dollars in government, foundation, and pharma funding with nothing to show for it....While targeting amyloid may or may not be necessary to treat Alzheimer’s, it is not sufficient, and the additional steps almost certainly include those that were ignored, even censored....“If it weren’t for the near-total dominance of the idea that amyloid is the only appropriate drug target,” he said, “we would be 10 or 15 years ahead of where we are now,” says Dr. Daniel Alkon, a longtime NIH neuroscientist.... Last year, two studies by teams at Mount Sinai and Harvard tied infectious agents to Alzheimer’s more strongly than any previous research had, supporting the idea that targeting pathogens and not the response to pathogens (amyloid plaques) might prevent or slow Alzheimer’s...“I just wonder if we’d be farther along if those of us studying the role of pathogens in Alzheimer’s had gotten the imprimatur of journals and meetings that the amyloid people did,” said neurobiologist Ruth Itzhaki. See more STAT stories by Begley

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Early-onset Alzheimer’s: should you worry? (Troy Rohn, The Conversation, 6-30-16) For every one of the 10 symptoms of Alzheimer’s posted, there is also a typical age-related change that is not indicative of Alzheimer’s disease. A typical age-related change may be sometimes forgetting names and appointments, but remembering them later. Early-onset is rare – but heredity does play an important role
Alzheimer's Disease Progress Report, 2014-2015: Advancing Research Toward a Cure (National Institute on Aging) As one expert put it, Alzheimer's disease, like any neurodegenerative disease, is very complicated. Congress: Muster the courage to appropriate an additional $300 million in Alzheimer's research this year.
Tackling Alzheimer's Disease (listen to Kojo Nnandi show, 7-23-15, about 20 minutes) When a person begins to forget how to get somewhere, or do something, that used to be automatic, that may be cause for concern. Jot that down and ask if other family members notice the same things. Caregivers are the backbones of the system and need guidance and support. Guests: Thomas Obisesan Professor of Medicine at Howard University; William Rebeck Professor of Neuroscience at Georgetown University Medical Center; Ana Nelson Vice President of Programs and Services at the Alzheimer’s Association. It's a pretty easy test to learn if you are at risk for Alzheimer's, but why would you want to know? Maybe about preventive measures, and drugs that inhibit inflammation.
The hidden side of dementia: Families fight over care, end-of-life decisions, finances, estates (Ken Alltucker, USA Today, 10-29-18) When an elderly family member is diagnosed with dementia, families can fight over caregiving, medical control and money. Casey Kasem’s widow battled his children to maintain medical control of the radio legend as he faded with a form of dementia. The wife and daughter of actor and comedian Tim Conway are sparring in court over the care of the former "Carol Burnett Show" star. Similar disputes divided the families of country music icon Glen Campbell and R&B singer Etta James. "Star Trek" actress Nichelle Nichols is the subject of a court action brought by her son. The high-profile legal battles around celebrities incapacitated by dementia are drawing attention to a phenomenon dividing many more families across the country. Mother in total denial, disagreements with stepparents, children fighting for access.

When a loved one has
Dementia, who gets to make
the hard decisions?
--Anonymous, Haiku posted on Kaiser Health News, 10-26-18
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The Long Goodbye, Part 1: After dementia sets in, mom and daughter make a few more memories (Britt Kennerly, Florida Today, 3-6-18) Part 2: When dementia sets in, the 'new normal' isn't normal at all (3-8-18) Daughter, wife, mom, working role model: A full, busy life. Part 3: What we've learned about dementia and what we're facing (3-9-18) As her mother's memories fade, her daughter honors her life, and faces the future with hope.
To Help Ward Off Alzheimer’s, Think Before You Eat ( Judith Graham, Kaiser Health News, 4-6-17) Two diets designed to boost brain health, targeted largely at older adults, suggest that certain nutrients — mostly found in plant-based foods, whole grains, beans, nuts, vegetable oils and fish — help protect cells in the brain while fighting harmful inflammation and oxidation. The Canadian Brain Health Food Guide and the competing MIND diet have both yielded preliminary, promising results in observational studies. Diets differ in the number of servings of particular foods (grains, berries etc.) but this much is clear: A poor diet can increase the risk of developing hypertension, cardiovascular disease, obesity and diabetes, which in turn can end up compromising an individual’s cognitive function. On the list of nutrients beneficial to neuropathology in the brain are Vitamin E, a powerful antioxidant found in oils, nuts, seeds, whole grains and leafy green vegetables; vitamin B12 — found in animal products such as meat, eggs, cheese and fish; and vitamin B9 (folate), found in green leafy vegetables, grains, nuts and beans. Because aging affects stomach acids that facilitate the absorption of B12, “everyone who gets to middle age should have a doctor check their B12 levels.” Omega-3 fatty acids found in fish and nuts oils (highly concentrated in the brain) play a role in the transmission of signals between cells. Limit to once-a-week servings saturated fats found in pastries, sweets, butter, red meat and fried and processed foods.“ At the end of the day, our [Canadian] diet, the MIND diet, the Mediterranean diet and the DASH diet are not that different; they’re all likely to be helpful,” said Carol Greenwood, a professor of nutrition at the University of Toronto and a key force behind the Canadian diet.
Alzheimer's Disease & Related Dementias (National Institute on Aging). Links to many resources, including Alzheimer's disease fact sheet.
The Last Day of Her Life (Robin Marantz Henig, New York Times Magazine, 5-14-15) When Sandy Bem found out she had Alzheimer’s, she resolved that before the disease stole her mind, she would kill herself. The question was, when? ‘What I want is to die on my own timetable and in my own nonviolent way.’ '‘A mind that could be so alive one moment with thought and feeling building toward a next step and then someone erases the blackboard. It’s all gone and I can’t even reconstruct what the topic was. It’s just gone. And I sit with the dark, the blank.’
Alzheimer's Stories by Robert S. Cohen and Herschel Garfein (libretto for opera). "Love and music are the last things to go. Sing anything. Sing anything.”
People-Oriented Jobs May Help Lower Alzheimer's Risk ( Dennis Thompson, HealthDay, 7-25-16) Activities that highly stimulate the brain might build up 'reserve' to help ward off dementia, studies suggest.
A bug for Alzheimer's? (Melinda Wenner Moyer, an essay in Aeon) A bold theory places infection at the root of Alzheimer’s, explaining why decades of treatment have done little good Why do experts resist the notion that infections might drive neurodegenerative disease? Conceding that the pathogen hypothesis has merit means admitting that the field has been wrong about Alzheimer’s for a very long time. ‘Big Pharma continue to pour research dollars into anti-beta-amyloid therapies, yet not a single clinical trial in the past 15 years has significantly improved patient outcomes.’

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Is the Leading Theory About Alzheimer's Wrong? (Sarah Zhang, The Atlantic, 2-22-17) Yet another failed drug (verubecestat) trial has prompted soul-searching about the “amyloid hypothesis.” (Told my friend K about this and heard back: "Edison supposedly said he had no failures, just 101 discoveries of what didn't work. Even the failed trials are useful.")
My Father-in-law on Risperdal — A Case Study Gets Personal (Steve McCrea, Mad in America, 8-16-15) "My wife Ginny's dad was a well-loved college professor with a totally unique and unforgettable personality. He was lively, intelligent, impulsive, witty, challenging, persistent, intense, insightful, and usually hilarious....He was diagnosed with Alzheimer’s not long after his induction ceremony. He gradually lost his sense of direction and then his sense of time. By 2009, it was clear that his wife and daughter (Ginny’s sister), despite heroic efforts, were no longer able to safely care for him at home....Unbeknownst to Ginny, he was put on the antipsychotic drug Risperdal not long into his stay. Risperdal also has earned a “black box” warning that its use in those with Alzheimer’s increases the risk of an earlier death. Yet its use in Alzheimer’s patients in nursing homes is extremely common." From Ginny's diary, a case study..."to illustrate what I have observed to be a common practice of using Risperdal and other antipsychotics essentially as chemical straitjackets to immobilize and disengage challenging or irritating residents. The degree of dishonesty displayed by the neurologist, and the level of disconnection and insensitivity of the staff to his obvious suffering was deeply disturbing, but I don’t believe these are rare phenomena in nursing homes and rehab facilities across the nation."
A Sense Of Self: What Happens When Your Brain Says You Don't Exist (Terry Gross interviews science journalist Anil Ananthaswamy, Fresh Air, NPR, 7-28-15). Ananthaswamy, author of : The Man Who Was Not There: Tales from the Edge of the Self, thinks a lot about "self" — not necessarily himself, but the role the brain plays in our notions of self and existence. He "examines the ways people think of themselves and how those perceptions can be distorted by brain conditions, such as Alzheimer's disease, Cotard's syndrome and body integrity identity disorder, or BIID, a psychological condition in which a patient perceives that a body part is not his own."..."Alzheimer's disease ... unfortunately literally erases a very important part of our sense of self, which is the narrative that we have in our heads about who we are. This narrative is something that the brain constructs and we're not even aware that it's actually a constructed thing. When we just think of ourselves, we have this expansive narrative inside us about who we are and what Alzheimer's unfortunately does is it puts a stop to the narrative forming. So because short-term memory formation is impaired, it becomes harder and harder for a person with Alzheimer's to start having new memories, and once you stop having or forming new memories, these memories don't get incorporated into your narrative. So, in some sense, your narrative stops forming. As the disease progresses it starts eating away at the existing narrative. It starts basically destroying a whole range of memories that go toward constituting the person that you are...."
Alzheimer's poem: Do Not Ask Me to Remember (Alzheimers.net blog)
Husband with Alzheimer’s forgot he was married to his wife of 38 years. He proposed, and they married again. (Allison Klein, WashPost, 1-25-18) Michael Joyce’s memory, and some of his speech have been snatched by Alzheimer’s. The disease is so advanced that he forgot he was married to his wife of 38 years. But he is in love with her, and he is also an honorable man, so he proposed to her on a recent morning. She said yes.

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The Mysteries of My Father’s Mind (Rebecca Rotert, Opinionator, NY Times, 8-13-14) A daughter's essay.
Alzheimer’s Patients Keep the Spark Alive by Sharing Stories (Jane E. Brody, NY Times, 8-8-16) An unusual eight-week storytelling workshop at Northwestern University is helping to keep the spark of love alive in couples coping with the challenges of encroaching dementia. Every week participants are given a specific assignment to write a brief story about events in their lives that they then share with others in the group. The program culminates with a moving, often funny, 20-minute written story read alternately by the partners in each couple in front of an audience. “It reinforces our relationship as a couple, rather than caregiver and patient, even though he is 85 percent dependent on me for the activities of daily living.” The workshop was the brainchild of Lauren Dowden, who learned from family members in a support group that “their concerns were not being addressed about dealing with loss, not just of memory, jobs and independence, but also what they shared as a couple.”
Artist With Alzheimer’s Drew Self Portraits For 5 Years Until He Could Barely Remember His Own Face (Bored Panda, ) In 1995, U.K.-based American artist William Utermohlen was diagnosed with Alzheimer’s disease. Before his death in 2007, Utermohlen created a heart-wrenching final series of self-portraits over the stages of Alzheimer’s, which lasted roughly five years, which document the gradual decay of his mind.
Why do people with Alzheimer's stop recognizing their loved ones? (Research report, EurekAlert, 4-11-16) Impaired facial recognition, stemming from a holistic perception problem, not just a general memory problem, may be the cause. Knowing that, trying different strategies (such as voice recognition) may help.More people with Alzheimer’s are becoming activists — which
Alzheimer's Disease In-Depth Report (NY Times excellent explanation of the basics, with illustrations)
E-learning courses on
    Know the 10 Signs: Early Detection Matters
    The Basics: Memory Loss, Dementia and Alzheimer’s Disease
    Legal and Financial Planning for Alzheimer's Disease
    Living with Alzheimer's for People with Alzheimer's
    Living with Alzheimer's: For Caregivers: Early Stage
Alzheimer's Navigator (helps guide you to answers by creating a personalized action plan and linking you to information, support and local resources)

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Ask the Expert About Alzheimer's (NY Times, 11-14-12). Dr. P. Murali Doraiswamy, a psychiatry professor at Duke University Medical Center (and co-author of The Alzheimer's Action Plan: What You Need to Know--and What You Can Do--about Memory Problems, from Prevention to Early Intervention and Care) answers readers' questions. See Part 2 here and Part 3 here, responding to questions about treatment, patient care and new clinical trials.
Diane Rehm's interview with Meryl Comer, author of Slow Dancing With A Stranger: Lost And Found In The Age Of Alzheimer's, a frank and moving story about her husband's long battle with early-onset Alzheimer's, bringing to life the realities of life with dementia, the need for earlier diagnosis, the stressful emotional and financial hardships for families, and the limitations of doctors and assisted living and long-term care facilities in managing difficult patient behaviors.
A Sense Of Self: What Happens When Your Brain Says You Don't Exist (Terry Gross interviews science journalist Anil Ananthaswamy about his book The Man Who Wasn't There: Investigations into the Strange New Science of the Self "Alzheimer's disease ... unfortunately literally erases a very important part of our sense of self, which is the narrative that we have in our heads about who we are. This narrative is something that the brain constructs...Alzheimer's unfortunately does is it puts a stop to the narrative forming. So because short-term memory formation is impaired, it becomes harder and harder for a person with Alzheimer's to start having new memories, and once you stop having or forming new memories, these memories don't get incorporated into your narrative. So, in some sense, your narrative stops forming. As the disease progresses it starts eating away at the existing narrative. It starts basically destroying a whole range of memories that go toward constituting the person that you are."

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An Absent Mind , a "riveting novel" by Eric Rill "about a race against time. The ticking time bomb is Saul Reimer's sanity. His Alzheimer's is going to be the catalyst that will either bring his family together or tear it apart."
Her Own Kind of Absence (Celia Watson Seupel, NY Times, 8-26-14) Essay about a secondary condition coming across as depression in her mother.
My Alzheimer's Struggle by Morris Friedell, written in the early stages of Alzheimer's. Friedell is prominently featured in The Forgetting, David Shenk's fine book about Alzheimer's.
Empathy Without Boundaries (Judith Graham, NY Times, New Old Age, 6-6-13) Research shows that "emotional contagion is heightened in people with mild cognitive impairment (M.C.I.) and Alzheimer’s. And the greater the level of cognitive deterioration, the more pronounced this emotional mirroring seems to be."
Late-Stage Caregiving (Alzheimer's and Dementia Caregiver Center)
Guidelines for Admission/Recertification of a Person with Alzheimer’s Disease and Related Disorders to Hospice Care (AlzOnline Caregiver Support) Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible)
Making an Exit: A Mother-Daughter Drama with Alzheimer's, Machine Tools, and Laughter by Elinor Fuchs. Crackling with energy, the unexpected love story of a career-driven mother ("who may never have understood the extent of her ability to hurt"), a once-resentful daughter, and a ten-year battle with Alzheimer's.
Tangles: A Story About Alzheimer's, My Mother, and Me a powerful graphic memoir by Sarah Leavitt. "A spot-on portrait of the dark comedy and vast sadness that Alzheimer’s contains" "married with warm, funny recollections of Jewish-Canadian life."
Fun Home: A Family Tragicomic by Alison Bechdel, whose bestselling graphic memoir charts her fraught relationship with her late father.

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Alzheimer's: Mementos help preserve memories (Mayo Clinic staff)
Alzheimer's Patients Turn To Stories Instead Of Memories (Joanne Silberner, Shots, NPR's Health Blog, 5-14-12). For people with dementia, storytelling can be therapeutic. The idea of a program called TimeSlips is to show photos to people with memory loss, and get them to imagine what's going on — not to try to remember anything, but to make up a story. ("TimeSlips opens storytelling to everyone by replacing the pressure to remember with the freedom to imagine.")
Treatment horizon (Alzheimer's Association Research Center)
Alzheimer's Facts and Figures (Alzheimer's Association)
Parkinson’s and Alzheimer’s Diseases: Similar But Very Different (Alz.org eNewsletter, Fall 2012)
The Alzheimer's Reality: A Nation in Diapers (Deborah Swiss, Huffpost, 7-18-13). "One in three seniors will die from a form of dementia so every one of us needs to speak for those silenced by this undignified killer. Alzheimer's is an epidemic. It urgently requires the level of funding that has made a difference for those afflicted with cancer, heart disease, and AIDS. "
Alzheimer's Project shown on HBO (this series, appearing on HBO in May 2009, can also be viewed free online at this link).
Alzheimer's Reading Room (caregiver Bob DeMarco's site, rich in current information, research, caregiver tools, advice, and insight into Alzheimer's disease)
Alzheimer's, resources for caregivers (David Shenk's site for The Forgetting)
Best Friends Approach
Beyond Forgetting: Poetry and Prose about Alzheimer's Disease
Camp For Alzheimer's Patients Isn't About Memories (read or listen to Deborah Franklin, NPR, 9-6-10)
Camps for Caring (Family Caregiver Alliance)
Caregivers, caregiving, and preventing or minimizing caregiver burnout (Scroll down to section on Alzheimer's, under Helpful Links)
Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and frontotemporal dementia or FTD)

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How Exercise Might Help Keep Alzheimer's At Bay (read or listen to Jon Hamilton, NPR 4-29-10)

Study: People Who Treat Alzheimer’s Patients Should Have Creative Hobbies (NoCamels, 1-26-14)
Do You Know Me? It's Still Me (Sue Hessel, blog of Association of Personal Historians, on helping dementia patients find and save their stories--and on helping caregivers see them as individuals and not as their disease)
My Father's Brain (abstract of Jonathan Franzen's New Yorker story about his father and Alzheimer's disease, September 10, 2001)
Understanding Alzheimer's (CBC News, 9-21-09)
Validation Training Institute (to learn a method for communicating with very old people who are diagnosed with dementia)
When Aggression Follows Dementia (Paula Span, New Old Age, NY Times, 7-12-13). The public generally thinks of dementia in terms of memory loss; sometimes, that’s the least of the problems. Violent behavior often leads families to place people with dementia in care facilities, but facilities, concerned about safety for their staff and other residents, aren’t always willing to take on that challenge, either.
The Dementia Rescue Missions (Jason Alcorn, Investigate West, 7-18-13) State unprepared to deal with 'wandering' dementia patients.
Washington not ready to handle Alzheimer’s increase (Jason Alcorn, Spokesman-Review, 7-22-13)

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Preparing for and preventing Alzheimer's disease and other forms of dementia


Can a hobby keep dementia at bay? Experts weigh in. (Anthea Rowan, Washington Post, 12-19-22) Activities that demand focus and industry are the whetstone to keeping cognition sharp, says David Merrill, an adult and geriatric psychiatrist and director of the Pacific Brain Health Center in Santa Monica, California. Our brains, he continues, are like any other part of our body. “‘Use it or lose it’ is not just a hypothesis, it’s a basic biologic fact that holds as true for our brains as our muscles or our bones.”
     The Lancet in 2020 identified "12 potentially modifiable risk factors for the condition; they include physiological (blood pressure, diabetes, hearing loss), lifestyle choices (smoking, drinking, physical inactivity), environmental (air pollution) depression, social isolation and a lower level of education. The Alzheimer Society of Canada is also clear about what we can do to help minimize our dementia risk: keep cognitively engaged, learn new things, meet new people, keep a diary, remain curious and engage in conversations."
A potential connection between dementia and air pollution ( Judith Graham, WaPo, 9-19-22) A growing body of research has shown that air pollution harms older adults’ brains, contributing to cognitive decline and dementia. What hasn’t been clear is whether improving air quality would benefit brain health.One report, published in the Proceedings of the National Academy of Sciences, "found that the risk of dementia declined significantly in women 74 and older following a decade-long reduction in two types of air pollution: nitrogen dioxide, a gaseous byproduct of emissions from motor vehicles, industrial sources and natural events such as wildfires; and fine particulate matter, a mix of extremely small solids and liquids arising from similar sources.
      "A second report in PLOS Medicine, relying on the same sample of more than 2,200 older women, found that lower levels of these pollutants were associated with a slower rate of cognitive decline. In areas where air-quality improvement was most notable, the rate of cognitive decline was delayed by up to 1.6 years, depending on the test."
      "Both studies are national in scope and account for other factors that could affect results, such as participants’ socioeconomic status, neighborhood characteristics, preexisting medical conditions and lifestyle choices such as smoking."
     “It’s really important for older adults to be outside and exercise,” Gerber said. “We don’t want seniors to end up sick because they’re breathing lots of particulates, but we don’t want them to become inactive and stuck at home, either.”
The most-fit are 33 percent less likely to develop Alzheimer’s, report says (Linda Searing, WaPo, 3-13-22) Numerous studies have found that regular physical activity can benefit the brain, and the Alzheimer’s Association describes it as one of the best things people can do to reduce their chances of developing dementia.
Steps to Prevent Dementia May Mean Taking Actual Steps (Austin Frakt, NY Times, 10-21-19) In 2018, consumers spent nearly $2 billion on brain-training apps, some of which claim to improve cognitive skills. "Evidence suggests you’d be better off spending more time exercising and less time staring at your phone....At least 150 minutes of moderate physical activity per week, including strength training, yields not just physical benefits but cognitive ones as well. But to be most effective, you need to do it before cognitive decline starts," according to the World Health Organization.  

     Examples cited: tai chi, aerobic exercise, bicycling, walking, jogging, swimming and weight training. One study found that persistently watching more than three hours of television per day or failing to regularly engage in at least a moderate level of physical activity is associated with worse executive function and lower processing speed in midlife. Physical activity is a gateway for social and cognitive engagement, and "the social part, not just the physical one, may help keep our minds active," though the physical activity may help by "reducing the likelihood of vascular dementia." And helps reduce the risk of other health problems as well.
Having both hearing and vision loss may double risk of dementia (Liz Seegert, Covering Health, AHCJ, 4-16-21) A new study says losing function in both senses may increase risk of dementia and cognitive decline down the road.“Older people with only a visual or hearing impairment can usually still maintain social contact, so they may not feel be as isolated or depressed as people who have both impairments,” Jhoo said. “However, when someone has both impairments, that may increase the risk of isolation and depression, which previous research has found may affect dementia risk and thinking skills later on.”
A New Treatment for Alzheimer's? It Starts With Lifestyle (Linda Marsa, Discover, 11-16-18) Based on nearly 30 years of research, physician Dale Bredesen, a professor of neurology at UCLA, believes Alzheimer’s is triggered by a broad range of factors that upset the body’s natural process of cell turnover and renewal; he didn’t think it emerged from just a handful of rogue genes or plaques spreading across the brain. “Normally, synapse-forming and synapse-destroying activities are in dynamic equilibrium,” explains Bredesen, but these factors can disturb this delicate balance: chronic stress, a lack of exercise and restorative sleep, toxins from molds, and fat-laden fast foods. Even too much sugar, or being pre-diabetic, heightens risk.

     “If you look at studies, you see the signature of insulin resistance in virtually everyone with Alzheimer’s,” he says. “If you look at all the risk factors, so many of them are associated with the way we live.” A series of other studies, including a major 2017 review by The Lancet, have identified a clutch of modifiable risk factors for Alzheimer’s: depression, obesity, physical inactivity, smoking, hearing loss, high blood pressure, diabetes and a lack of education.

     The review concluded that improving on these risk factors could prevent more than a third of dementia cases across the globe. A Finnish study found that mental acuity could be preserved with a regimen of physical activity, proper diet, mental exercises, social engagement and intensive monitoring of vascular and metabolic risk factors
How Soon Is Soon Enough to Learn You Have Alzheimer’s? (Alex Smith, KCUR, KHN, 7-26-18) Jose Belardo of Lansing, Kan., spent most of his career in the U.S. Public Health Service. He worked on the front lines of disasters in such places as Haiti, Colombia, Nicaragua and the Dominican Republic. At home with his three kids and wife, Elaine, he’d always been unfailingly reliable, so when he forgot their wedding anniversary two years in a row, they both started to worry. “We recognized something wasn’t right and pretty much attributed it to being overworked and tired,” Elaine said....Researchers are making progress in measuring beta-amyloid and other Alzheimer’s biomarkers in blood that might eventually be able to reliably, inexpensively and non-invasively identify the disease years before cognitive symptoms develop....[One] reason to see a doctor at the first development of mild cognitive symptoms is because the symptoms might stem from something else that is quite treatable.
How Do You Live Knowing You Might Have an Alzheimer’s Gene? (Gina Kolata, NY Times Magazine, 6-7-12) "An Alzheimer's Gene: One Family's Saga." Alzheimer’s is the sixth leading cause of death in this country, and is the only disease among the 10 deadliest that cannot be prevented, slowed or cured. "In 1995, four years after Alison Goate and her colleagues found the first Alzheimer’s gene, two more genes were discovered....The three genes are on different chromosomes, and different families have different mutations in the genes, but in every case, the mutated gene leads to the same result: the brake that normally slows down the accumulation of beta amyloid, a toxic protein that forms plaques, no longer works. Beta amyloid piles up and sets the inexorable disease process in motion." A good explanation of how the disease probably works, physically.

      “In Alzheimer’s, we are coming to realize that it’s more difficult to treat after there are symptoms,” Bateman says. By then “extensive neuronal death has occurred.” Tau has been destroying brain cells, and “the adult brain does not replace those lost neurons.” A good long discussion of how Alzheimer's probably works and what scientists are trying to do to be able to treat or prevent it -- illustrated with stories from one family with a predisposition toward the disease.
Study shows common acid suppressants may increase dementia risk (Liz Seegert, Covering Health, AHCJ, 7-6-2020) Be careful about Prilosec (omeprazole), Nexium (esomeprazole) and Prevacid (lansoprazole).
How Do You Live Knowing You Might Have an Alzheimer’s Gene? (Gina Kolata, NY Times Magazine, 6-7-12) Alzheimer’s is the sixth leading cause of death in this country, and is the only disease among the 10 deadliest that cannot be prevented, slowed or cured. "In 1995, four years after Alison Goate and her colleagues found the first Alzheimer’s gene, two more genes were discovered....The three genes are on different chromosomes, and different families have different mutations in the genes, but in every case, the mutated gene leads to the same result: the brake that normally slows down the accumulation of beta amyloid, a toxic protein that forms plaques, no longer works. Beta amyloid piles up and sets the inexorable disease process in motion." A good explanation of how the disease probably works, physically.

      “In Alzheimer’s, we are coming to realize that it’s more difficult to treat after there are symptoms,” Bateman says. By then “extensive neuronal death has occurred.” Tau has been destroying brain cells, and “the adult brain does not replace those lost neurons.” A good long discussion of how Alzheimer's probably works and what scientists are trying to do to be able to treat or prevent it.
       "In terms of reduced risk of dementia, here is how some of the activities, mental and physical, stacked up:
---Bicycling and swimming – 0% reduced risk
---Playing golf – 0%
---Reading – 35%
---Doing crossword puzzles at least four days per week – 47%
---Dancing frequently – 76% – the greatest risk reduction of any activity studied, cognitive or physical." Source: Dancing and Dementia (Care for You)
Dance therapy improves seniors' gait, balance, researcher finds (Science Daily, 4-17-10 )
Alzheimer's could be spotted 20 years before the first symptoms appear (Sarah Knapton, The Telegraph, 1-27-16) Spotting the earliest signs of Alzheimer's Disease could lead to new treatments for preventing the onset of dementia, scientists believe In September, a landmark study by scientists at University College London found Alzheimer's disease may be transmissible through blood transfusions and medical accidents in the same way as Creuzfeldt Jakob Disease (CJD). Now a study – published in in the Swiss Medical Weekly – by researchers in Switzerland and Austria have reported autopsy results that suggest Alzheimer’s disease might occasionally be transmitted to people during certain medical treatments
We Are a Long Way From an Alzheimer’s Cure (Howard Gleckman, 7-23-14). "Two take-aways from the recently concluded Alzheimer’s Association International Conference in Copenhagen: First, after years of research, we still know remarkably little about what causes dementia or how to prevent or delay it. Second, the dementia establishment . . .is so focused on a cure that it pays too little attention to the immediate needs of those who already have dementia and those caring for them." Gleckman reports on various issues and asks why taxpayers should be financing research for drugs drug companies expect to make huge profits from.
Alzheimer’s spurs the fearful to change their lives to delay it (Fredrick Kunkle, Washington Post, 7-5-15). Best hope is to postpone, not prevent, Alzheimer's. One story of using diet, intense exercise, and brain stimulation to try to better the odds.
Dietary Guidelines for Alzheimer's Prevention (Physicians Committee for Responsible Medicine) “By staying active and moving plant-based foods to the center of our plates, we have a fair shot at rewriting our genetic code for this heart-wrenching , and costly, disease.” The seven guidelines to reduce risk of Alzheimer's disease, in short:

1) Minimize your intake of saturated fats and trans fats.

2) Eat plant-based foods.

3) Consume 15 milligrams of vitamin E, from foods, each day.

4) Take a B12 supplement.

5) Avoid vitamins with iron and copper.

6) Choose aluminum-free products (avoid the use of cookware, antacids, baking powder, or other products that contain aluminum).

7. Exercise for 120 minutes each week.

See Dietary Guidelines for Alzheimer's Prevention"target="_blank">fuller short version of dietary guidelines here and full text of Dietary and lifestyle guidelines for the prevention of Alzheimer's disease here.

To Help Ward Off Alzheimer’s, Think Before You Eat (Judith Graham, Kaiser Health News, 4-6-17) Diets designed to boost brain health, targeted largely at older adults, are a new, noteworthy development in the field of nutrition. The latest version is the Canadian Brain Health Food Guide, created by scientists in Toronto. Another, the MIND diet, comes from experts at Rush University Medical Center in Chicago and Harvard T.H. Chan School of Public Health. Both diets draw from a growing body of research suggesting that certain nutrients — mostly found in plant-based foods, whole grains, beans, nuts, vegetable oils and fish — help protect cells in the brain while fighting harmful inflammation and oxidation....In observational studies, the Canadian version — similar to the Mediterranean diet but adapted to Western eating habits — is associated with a 36 percent reduction in the risk of developing Alzheimer’s disease. The MIND diet — a hybrid of the Mediterranean diet and the DASH diet (Dietary Approaches to Stop Hypertension) — lowered the risk of Alzheimer’s by 53 percent.
Ask the Expert About Alzheimer's (NY Times, 11-14-12). Dr. P. Murali Doraiswamy, a psychiatry professor at Duke University Medical Center (and co-author of The Alzheimer's Action Plan: What You Need to Know--and What You Can Do--about Memory Problems, from Prevention to Early Intervention and Care) answers readers' questions. See Part 2 here and Part 3 here, responding to questions about treatment, patient care and new clinical trials.
Trying To Solve The Alzheimer’s Puzzle (Melissa Bailey, Kaiser Health News, 1-30-17) Despite a 99 percent failure rate and another major setback last month, Alzheimer’s researchers are plowing ahead with hundreds of experiments — and a boost in federal money — to try to a crack a deadly disease that has flummoxed them for decades. Decades of research have not produced a single drug that alters the disease’s course. Scientists aren’t giving up on the main hypothesis behind many clinical trials: that Alzheimer’s can be defeated by using drugs to attack amyloid “plaques” that build up in the brain of Alzheimer’s patients. Other scientists are targeting what they believe is the true culprit, the protein tau, which creates “tangles” in the brain, the disease’s other primary marker. Patients can access only four Food and Drug Administration-approved Alzheimer’s drugs that alleviate symptoms but do not prevent, slow or reverse brain damage. Observational studies have shown that people who exercise more and have healthier diets seem to get the disease later in life. A study in JAMA in November found that even as scientists have made no progress in changing Alzheimer’s course, overall dementia rates, which include Alzheimer’s and other dementias, appear to be dramatically declining.
Evidence Lacking To Support Alzheimer's Prevention (read or listen to Rose Raymond, NPR 4-28-10)

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Frontotemporal dementia (FTD)/Pick's disease

FTD or frontotemporal dementia is the leading cause of dementia that strikes in middle age--at a younger age than Alzheimer´s. Cases have been seen as early as 21 and as late as 80, but the disease typically hits during the 40s, 50s and 60s – when children are still in the home." ~ from excellent site of the University of California, San Francisco. UCSF is at the forefront studying frontotemporal dementia, a wasting disease similar to Alzheimer's that strikes patients at their peak. This next story comes from UCSF.
The Other Dementia (Katherine Nichols, SFGate, 2-25-07) "Dawn spoke with impeccable grammar until she reached her late 40s, when she began struggling to assemble a sentence. Her 8-year-old daughter would ask for a hug, but the once-doting mother pushed her away. A former vice president at a local bank, Dawn became unable to manage her own finances. Her spending became so irrepressible that her family had to seek court orders to prevent her from losing everything she had saved. Before she was diagnosed with frontotemporal dementia (FTD) at the University of California at San Francisco in 2002, Dawn divorced her husband. She was 52 years old. And the relentless decline continued.
       "Financial mismanagement and loss of judgment and empathy are typical symptoms of frontotemporal dementia, a degenerative brain disease that attacks slowly and yields devastating results, often stripping patients of language skills and inciting behavior so bizarre, damaging and unpredictable that approximately 60 percent of cases are misdiagnosed as psychiatric disorders. Perhaps even more devastating is the loss of personality -- the relentless destruction of everything that made someone who he or she once was -- which often obliterates relationships and careers before anyone even determines there is an illness."
Bruce Willis' Frontotemporal Dementia (Michele R. Berman, MedPage Today, 3-23-23) Quoting scattered bits from the article: After being diagnosed with aphasia, Willis's condition progressed and he was diagnosed with FTD. Language-type FTD is often referred to as primary progressive aphasia (PPA), which has two types: nonfluent-variant PPA and semantic-variant PPA. Those with the semantic variant lose the ability to understand or formulate words in a spoken sentence, while the nonfluent variant causes a person's speaking to be very hesitant, labored, or ungrammatical. Behavior-variant FTD and semantic-variant PPA are more prevalent in men, while nonfluent-variant PPA predominantly occurs in women. People with behavior-variant FTD may have problems with cognition, but their memory may stay relatively intact. PPA involves changes in all aspects of communication -- the ability to use language to speak, read, write, and understand what others are saying. People with PPA can have difficulty using or understanding words, as well as difficulty speaking properly. They may become mute.
Frontotemporal dementia: Devastating, prevalent and little understood Bill Whitaker (60 Minutes, 9-15-19) reports on FTD, a devastating illness and the most common form of dementia for Americans under the age of 60. "With FTD, people either display such bizarre behavior that their loved ones can hardly recognize them, or they lose the ability to recognize themselves.... Dr. Bruce Miller may be the world's leading expert on frontotemporal dementia. He runs a lab at the University of California San Francisco that's doing cutting-edge research on the two main forms of FTD — the speech variant that Tracey Lind has, and a behavioral variant that attacks personality, judgement and empathy."
Frontotemporal Dementia (NINDS information page) Frontotemporal dementia (FTD) is a group of related conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These areas of the brain play a significant role in decision-making, behavioral control, emotion and language. Synonym(s): (FTD describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD.
Take a Larger Way: Reflections of a Dementia Caregiver by Jay Brenneman. "The author gives a raw appraisal of the suffering a loved one goes through when a partner lives the slow death of dementia but he also articulates the glimpses of grace and mercy that are available."
Short documentary about Frontotemporal Dementia/Picks (YouTube)
Forms of Frontotemporal Dementia: Behavioral variant FTD, semantic dementia, progressive nonfluent aphasia, and FTD with motor neuron disease. One of the most complete (yet succinct) explanations can be found in a free PDF publication from the National Institute on Aging: Frontotemporal Disorders: Information for Patients, Families, and Caregivers. It discusses frontotemporal dementia, primary progressive aphasia, and movement disorders--brain disorders that affect personality, behavior, language, and movement. It includes these links to useful resources.
Behavioral Variant FTD (The Association for Frontotemporal Degeneration) Behavioral variant FTD (bvFTD), the most common form of FTD, is responsible for about half of all cases of this disease. BvFTD is also frequently referred to as frontotemporal dementia or Pick’s disease.

      "The hallmarks of bvFTD are personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy. Unlike in Alzheimer’s disease, memory is usually relatively spared in bvFTD. People with bvFTD typically do not recognize the changes in their own behavior, or exhibit awareness or concern for the effect their behavior has on the people around them."
FTD/Dementia Support Blog (Howard Glick's blog, originally for early dementia support--see also Meet Howard Glick
The saddest goodbye, cartoonist Tony Husband's account of watching it steal away his father? (Daily Mail online, 5-9-14--online; also available as a Kindle book: Take Care, Son). When Ron Husband started to forget things - dates, names, where he'd put things - it took a while for his family to realise that this was a different kind of forgetting. Now his illustrator son, Tony, has turned their story into a heartbreaking picture book unlike any other. Read online, free.
The grief and helplessness of dementia — both for my father and for me by Michael R. Auslin (Wash Post, 1-30-15) "My father has frontotemporal and vascular dementia. The doctors say it is perhaps the most difficult form of dementia, leaving him with no control over his emotions, no short-term memory and no ability to make sense of the world. He lives in the instant, repeating the same question...." "What is most frightening is that none of the many doctors and specialists he has seen have found a way to keep him stable, to dampen the rages that cause him to strike out at his caregivers. My mother kept him at home for the past three years, becoming emotionally and physically drained in the process. Now, though, she can no longer be his primary caregiver, as his confusion, agitation and restless wandering make him a danger to himself and to her."
• Rachel Hadas, who "lost" her husband to FTD, writes about how his decline changed their lives in her memoir Strange Relation: A Memoir of Marriage, Dementia, and Poetry, spotlighted on NBCC's Critical Mass. She speaks about her husband's illness in an interview on NPR's Talk of the Nation (Spouse's Dementia Leaves Poet A 'Strange Relation'). Hadas recommends The Association for Frontotemporal Degeneration (AFTD) and the Well Spouse Association (support groups for spousal caregivers). Here's her poem, “In the Taxi to the MRI.”
How my father's dementia destroyed us both (Michael R. Auslin, NZ Herald, 2-9-15) Auslin describes what it's like to watch a parent vanish before your eyes.
      "My father has frontotemporal and vascular dementia. The doctors say it is perhaps the most difficult form of dementia, leaving him with no control over his emotions, no short-term memory, and no ability to make sense of the world....I know that, given half a chance and a second of lucidity, he would kill himself....If his rages cannot be controlled, if he is perceived as a threat to others, then there are no options left but a nursing home, where he may spend his remaining days and nights sedated and in restraints. Our medical system simply does not have any other answers for so many like my father and can offer little hope to millions of families."
Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and frontotemporal dementia or FTD)\
No place for Dad (Catherine Capellaro, The Daily Page, Isthmus, 3-6-14) "Treatment options were scarce for our father, an eloquent newspaper man now nearly mute. Not even nursing homes could handle his end-stage dementia."
Documenting a mother’s life — and her descent into dementia (with video) (Denise Ryan, Vancouver Sun, 5-9-14) Trish Neufeld creates legacy films for others after making one of her mother, who was diagnosed with frontotemporal dementia (text and video).

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Lewy body dementia


Dementia with Lewy bodies (DLB) is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time. It is the third most common cause of dementia after Alzheimer's disease and vascular dementia, accounting for 10 to 25 percent of cases.~Alz.org.

      "Lewy bodies are also found in other brain disorders, including Alzheimer's disease and Parkinson's disease dementia. Many people with Parkinson's eventually develop problems with thinking and reasoning, and many people with DLB experience movement symptoms, such as hunched posture, rigid muscles, a shuffling walk and trouble initiating movement."
• Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. National Institute on Aging There are two diagnoses of LBD—dementia with Lewy bodies and Parkinson's disease dementia. The earliest signs differ but reflect the same biological changes in the brain. Over time, people with dementia with Lewy bodies or Parkinson's disease dementia may develop similar symptoms.
Lewy Body Dementia Association, Inc.
Dementia With Lewy Bodies Information Page (NINDS--National Institute of Neurological Disorders and Stroke)
Lewy body dementia (Mayo Clinic information) "Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia may experience visual hallucinations, and changes in alertness and attention. Other effects include Parkinson's disease-like symptoms such as rigid muscles, slow movement and tremors."
What's the Difference Between Lewy Body Dementia, Parkinson’s Disease and Alzheimer’s Disease? (David Phinney Foundation for Parkinson's)
'It Was Not Depression That Killed Robin' (Kara Warner, People, 11-4-15) "It was not depression that killed Robin," Susan says, speaking to the public perception of what drove Williams to commit suicide. "Depression was one of let's call it 50 symptoms and it was a small one." "Frequently misdiagnosed, DLB is the second most common neurodegenerative dementia after Alzheimer's and causes fluctuations in mental status, hallucinations and impairment of motor function. The disease started taking its toll on Williams in the last year before his death, by way of its "whack-a-mole"-like symptoms which included heightened levels of anxiety, delusions and impaired movement." It took more than a year to arrive at a diagnosis of diffuse Lewy body dementia or dementia with Lewy bodies (DLB).
Robin Williams’s Widow Points to Dementia as a Suicide Cause (Dave Itzkoff and Benedict Carey, NY Times, 11-3-15) "Some 1.3 million Americans have Lewy body dementia and its symptoms are harder to live with each day, especially for relatively young people like Mr. Williams. The disorder is often mistaken for Alzheimer’s disease, or Parkinson’s disease: there’s an Alzheimer’s-like slippage in memory and thinking, as well as stiffness and movement problems seen in Parkinson’s. The similarities in the three disorders are extensive enough that it often takes more than a year — and multiple visits to specialists — to get an accurate diagnosis." For some it takes a few years, and they discover it online. "By that time, more distinctive signs of the dementia are usually established, including chronic sleep problems; “fluctuations” in thinking, in which mental acuity comes and goes; and visual hallucinations, often of animals, children, or miniature people. Those visions might be persistent enough to look like schizophrenia or another psychiatric disorder..."
4 Things Caregiving Taught Me (Jeff Yeager, AARP, 8-4-16) The popular savings expert shares his experience caring for his mother who battled Lewy body dementia.
Joe Joe: I wasn't expecting this today. It turned out to be the worst day of my life (Joe Joe's series of videos about caring for his mother, whose life changes as Lewy Bodies dementia advamces.) "I know I was asking a lot of questions but I was in a panic thinking she didn't know who I was. This was the first time I realized she might not know who I am. All I wanted her to say was she knew I was her Son, but those words never came."-Joe D.
Dementia With Lewy Bodies (NINDS information page)
Sharing my life with Lewy Body Dementia (Silverfox, 9-26-14). A continuation of the previous title; "Sharing my life with Parkinson's and Dementia" because the diagnosis has become more firm.
Lewy Body dementia (Mayo Clinic information). Lewy body dementia, the second most common type of progressive dementia after Alzheimer's disease, causes a progressive decline in mental abilities.

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Other forms of dementia

Alzheimer’s disease accounts for 60 to 80 percent of dementia cases, but there are other forms of dementia. • Types of dementia (Alzheimer's Association)
Some Dementia Can Be Treated, But My Mother Waited 10 Years For A Diagnosis (Roni Caryn Rabin, Kaiser Health Network, 3-3-15) With normal pressure hydrocephalus, or NPH, a buildup of cerebrospinal fluid in the brain causes difficulty walking, urinary incontinence and cognitive loss, in that order. For many physicians NPH doesn’t come to mind when they see people with cognitive and gait problems, although it is one of the few treatable causes of dementia. “This should be one of the first things physicians look for in an older person,” said Rabin's mother. “You can actually do something about it.”
• Jane Brody's s story about primary progessive aphasia (P.P.A.):A Thief That Robs the Brain of Language (NY times, 5-2-11).
Where the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley. A memoir about primary progressive aphasia—from early-onset diagnosis at the age of 62 on. A candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering
Multi-Infarct Dementia (NINDS information page, National Institute of Neurological Disorders and Stroke)
Mixed dementia: emerging concepts and therapeutic implications. (Langa KM, Foster NL, Larson EB, JAMA, 12-15-04)
Mixed Dementia (Alzheimer's Organization)
Parkinson's Dementia (Fact Sheet, Parkinson's Foundation)
Parkinson’s Disease and Parkinson’s Dementia (HelpGuide.org)
Alcohol-related dementia
Dementia related to HIV (eMedicineHealth) Decline in mental processes is a common complication of HIV infection (and many other conditions)
Dementia in Huntington's Disease (Stephanie Liou, Huntington's Outreach Project at Stanford, 6-26-10) Dementia refers to neurodegeneration that results in loss of mental abilities. Neurodegeneration is the loss of mental abilities that can be caused by brain damage and/or neuron death. For this reason, dementia is common in neurodegenerative disorders such as Alzheimer’s Disease. While Huntington’s Disease (HD) is commonly thought of as a motor disorder, cognitive symptoms can be present which can progress to dementia. See The Cognitive Symptoms of Huntington’s Disease
Wernicke-Korsakoff syndrome (Medline Plus) Wernicke-Korsakoff syndrome is a brain disorder due to vitamin B1 (thiamine) deficiency (beri beri). Wernicke encephalopathy and Korsakoff syndrome are different conditions that often occur together. Both are due to brain damage caused by a lack of vitamin B1. Lack of vitamin B1 is common in people who have alcohol use disorder. It is also common in people whose bodies do not absorb food properly (malabsorption). This can sometimes occur with a chronic illness or after weight-loss (bariatric) surgery. Korsakoff syndrome, or Korsakoff psychosis, tends to develop as Wernicke symptoms go away. Wernicke encephalopathy causes brain damage in lower parts of the brain called the thalamus and hypothalamus. Korsakoff psychosis results from permanent damage to areas of the brain involved with memory.
Wernicke-Korsakoff Syndrome (National Organization for Rare Disorders, NORD) Wernicke's syndrome, also known as Wernicke encephalopathy, is a neurological disease characterized by the clinical triad of confusion, the inability to coordinate voluntary movement (ataxia), and eye (ocular) abnormalities. Korsakoff's syndrome is a mental disorder characterized by disproportionate memory loss in relation to other mental aspects. When these two disorders occur together, the term Wernicke-Korsakoff syndrome is used. In the United States, most cases occur in alcoholics."
Creutzfeldt-Jakob disease (Alzheimer's Association) Creutzfeldt-Jakob disease (CJD) is the most common human form of a group of rare, fatal brain disorders known as prion diseases (related to what's commonly known as "mad cow disease") "Prion diseases, such as Creutzfeldt-Jakob disease, occur when prion protein, which is found throughout the body but whose normal function isn't yet known, begins folding into an abnormal three-dimensional shape. This shape change gradually triggers prion protein in the brain to fold into the same abnormal shape," destroying brain cells.
Multi-Infarct Dementia (information page, National Institute of Neurological Disorders and Stroke, or NINDS)
What reporters should know about Alzheimer’s and related dementias (Association of Health Care Journalists, or AHCJ, which provided many of the links for "other forms of dementia."

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Dementia signs, symptoms, testing and diagnosis

10 Early Signs and Symptoms of Alzheimer's (Alzheimer's Association, or Alz.org) A symptom is what you as a patient experience, subjectively; a sign is an objective phenomenon that can be observed objectively by someone else. What are the differences between signs of Alzheimer's and typical age-related changes (for example, inability to manage a budget and missing a monthly payment).

 

Signs and symptoms can vary, but common ones include:

Memory loss, poor judgment and confusion
Difficulty speaking, understanding and expressing thoughts
Difficulty with reading and writing
Wandering and getting lost in a familiar neighborhood
Trouble handling money responsibly and paying bills
Repeating questions
Using unusual words to refer to familiar objects
Taking longer to complete normal daily tasks
Losing interest in normal daily activities or events
Acting impulsively
Not caring about other people's feelings
Losing balance or experiencing problems with movement


Walking Speed Helps Predict Future Dementia (Judy George, MedPage Today, 6-1-22) A combined drop in both walking speed and cognitive function was tied to an increased risk of dementia, a study of nearly 17,000 older adults showed.
Novel Blood Test Detects Alzheimer's Neurodegeneration Brain-derived tau distinguished Alzheimer's from other dementias (Judy George, MedPage Today, 12-30-22)
Teepa Snow Discusses the Ten Early Signs of Dementia (YouTube video, 17 minutes)
Is It Normal Memory Loss or Early Dementia? (Elizabeth Agnvall and Andy Markowitz, AARP, 6-9-2020) Worried about your memory? Take our quiz.
Kris Kristofferson: An Outlaw at 80 (Neill Strauss, Rolling Stone, 6-6-16) For years, his family thought he had Alzheimer's. Turns out he had Lyme disease.
Our eyes may provide early warning signs of Alzheimer’s and Parkinson’s (Elizabeth Anne Brown, Washington Post, 2-27-2021) "Changes to the retina may foreshadow Alzheimer’s and Parkinson’s diseases, and researchers say a picture of your eye could assess your future risk of neurodegenerative disease. Pinched off from the brain during embryonic development, the retina contains layers of neurons that seem to experience neurodegenerative disease along with their cousins inside the skull. The key difference is that these retinal neurons, right against the jellylike vitreous of the eyeball, live and die where scientists can see them....By the time a patient complains of memory problems or tremors, the machinery of neurodegenerative disease has been at work probably for years or decades." Early detection is "sort of the Holy Grail."
Common Medications Can Masquerade As Dementia In Seniors (Judith Graham, KHN, 7-18-19) An estimated 1 in 4 older adults take anticholinergic drugs — a wide-ranging class of medications used to treat allergies, insomnia, leaky bladders, diarrhea, dizziness, motion sickness, asthma, Parkinson’s disease, chronic obstructive pulmonary disease and various psychiatric disorders.Older adults are highly susceptible to negative responses to these medications. Unfortunately, “physicians often attribute anticholinergic symptoms in elderly people to aging or age-related illness rather than the effects of drugs.” Graham reports on why and what should be done about it.

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Explainer: what is Alzheimer’s disease? (Lauren Bartley and Yue Huang, The Conversation, 4-2-14) Cognitive evaluation by a neuropsychologist is typical in the diagnostic process. Some very basic and commonly used tests such as the Mini-Mental State Examination, the Alzheimer’s Disease Assessment Scale - Cognition and Addenbrooke’s Cognitive Examination - Revised can help determine whether a person is well orientated, their speed of thinking, reasoning skills, memory and perception.
What if You Knew Alzheimer’s Was Coming for You? (Pagan Kennedy, NY Times Sunday Review, 11-17-17) Simple blood tests may soon be able to deliver alarming news about your cognitive health. "Do you want to receive potentially alarming news about your cognitive health, or would you rather not? If you learn that you have a high risk for Alzheimer’s, is that information you will want to keep private — from employers, clients, health insurers and others? Or will you want to openly embrace it as part of your identity and publicly advocate for a cure? ...In the difficult months after her genetic test, Ms. Gregory “wanted to be with people who were going through the same devastation,” so she sought out other ApoE4 carriers. In 2013, she and a few others started a nonprofit group and created a website (ApoE4.info) where the community could gather. Today the group has more than 2,000 members."
Personality Change May Be Early Sign of Dementia, Experts Say (Pam Belluck, NY Times, 7-24-16) They are proposing the creation of a new diagnosis: mild behavioral impairment. "Mood and behavior changes have long been recognized as early-warning signs of frontotemporal dementia, which accounts for about 10 percent of dementias."
Health Check: are my memory lapses normal or could this be Alzheimer’s disease? (Serge Gauthier, The Conversation, 4-13-15) Your doctor will then test your memory with a screening tool such as the Montreal Cognitive Assessment . This identifies people with memory or other cognitive complaints, such as looking for words, or for your car in the parking lot, and delays in making decisions.
Top 7 Physical Alzheimer’s Symptoms (Jeff Anderson, Senior Living Blog, A Place for Mom, 11-13-15)<

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br />• Alzheimer’s and Dementia Testing for Earlier Diagnosis (Alzheimer's Association Research Center)
Alzheimer's Navigator (map out a plan to approach Alzheimer's)
Sundowners Syndrome: Triggers & Management (A Place for Mom, 5-7-15)
House Beautiful (Liat Katz, Pulse, 8-14-15). A social worker reports on a sweet woman who is clearly unaware of her own dementia. We should all be so lucky as to have someone like her watching out for us.
Alzheimer’s warning signs (Fredrick Kunkle, Health and Science, Wash Post, 4-6-15) Not remembering someone's name is a retrieval problem. "A warning sign is when you don't remember them at all." "Difficulty planning and executing familiar tasks can signal deeper cognitive problems."
Alzheimer's Blood Test Raises Ethical Questions (Jon Hamilton, NPR, 3-9-14) An experimental blood test can identify people in their 70s who are likely to develop Alzheimer's disease within two or three years....But the biggest concern about Alzheimer's testing probably has to do with questions of stigma , Karlawish says. "How will other people interact with you if they learn that you have this information?" he says. "And how will you think about your own brain and your sort of sense of self?"
Louise Penny speaks out about life after her husband's dementia diagnosis (CBC News, Montreal, 1-23-15) Tests show the normal range but "Michael started out as brilliant and descended to normal," the novelist says (in two videos), talking about the early signs--in his case, partly a reduced ability to process numbers and money. "It can be difficult, frustrating, and exhausting. It helps that I love him but it's not easy." Nancy Reagan described it as "the long goodbye," and that's what it is.
• And remember: it could just be your aging memory. Forget About It: Your Middle-Aged Brain Is Not On The Decline (Barbara Bradley Hagerty, All Things Considered, NPR, 3-15-16). Listen or read. "Crystallized intelligence is our accumulated experience and skills, general knowledge, vocabulary that we learn across our lifespan, so to speak," says cognitive neuroscientist Susanne Jaeggi. Crystallized intelligence can keep rising through your 60s and 70s. Fluid intelligence is "our ability to solve new problems or approach or reason without relying on previously acquired knowledge or skills or experience," Jaeggi says. Working memory is "your ability to hold information in your head as you manipulate, juggle and update it"..."If we can strengthen working memory skills, we might see benefits on all other tasks that rely on the functioning of the working memory system, such as fluid intelligence or reading comprehension or others," she says.

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Alzheimer's Blood Test Raises Ethical Questions (Jon Hamilton, NPR, 3-9-14) An experimental blood test can identify people in their 70s who are likely to develop Alzheimer's disease within two or three years....But the biggest concern about Alzheimer's testing probably has to do with questions of stigma , Karlawish says. "How will other people interact with you if they learn that you have this information?" he says. "And how will you think about your own brain and your sort of sense of self?"
Footprints to Cognitive Decline and Alzheimer’s Are Seen in Gait (Pam Belluck, NY Times, 7-16-12), Changes in an older person’s gait appear to be an early indicator of cognitive impairment, including Alzheimer’s disease. Follow-up article, inviting comments: A New Test for Dementia: Walking (NY Times, 7-17-12)
Dementia Values and Priorities Tool (Compassion & Choices) Guides you through a series of questions to consider the care you want if diagnosed with dementia.
Study Links Anxiety Drugs to Alzheimer’s Disease (Paula Span, NY Times, 9-24-14)
Test Your Memory for Alzheimer's and Dementia (5 Best Memory Tests) (free self assessment tests for Alzheimer's, dementia, and mild cognitive impairment, Alzheimer's Reading Room)
What is mild cognitive impairment (MCI)? (Alzheimer's Society)
Alzheimer's tests using pen and paper still the best (Shari Roan, Los Angeles Times, Booster Shots blog 9-6-11)
Alzheimer’s Anxiety (Ezekiel J. Emanuel, Op-Ed, NY Times, 11-16-13) "Alzheimer’s disease is scary. But that is no reason for society to waste a lot of money on a test that really doesn’t help. It is a reason for a lot more research on Alzheimer’s, including Medicare’s randomized trial to evaluate the effectiveness of the test."
10 Early Signs and Symptoms of Alzheimer's (Alzheimer's Association)

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Helpful books about dementia

See also Films about dementia


• • • • The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins
• • • • Still Alice by Lisa Genova (a realistic novel--see review in AARP magazine.

 

Must-Read Books for Alz Caregivers

as recommended by Alz-Alive.
When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer's and Dementia Caregivers by Mara Botonis
---Articles by Mara Botonis
---Symptom Tracker This tool was designed to help the family caregiver track the type and frequency of the symptoms your loved one is exhibiting to support better communication and planning with your medical team and other healthcare providers as you collaborate in identifying the best possible treatment and interventions based upon your specific situation.
---Template for biography-based care
Love and Forgetting: A husband and wife's journey through dementia by Julie Macfie Sobol and Ken Sobol. Julie Macfie Sobol wakes up to a whirlwind of blankets: her husband, Ken Sobol, is tearing the bed apart.…
An Author's Story For the past 15 years, Louise Penny and her husband Michael Whitehead have lived just outside of the small town of Sutton, in the Eastern Townships of Quebec. Read their story online (four pages).
Hateship Friendship Courtship Loveship Marriage contains Alice Munro's story story "The Bear Came Over the Mountain," which follows the lives of an elderly married couple who struggle to maintain the connection in their imperfect yet loving marriage, after the wife, Fiona, is diagnosed with Alzheimer’s.
Still Alice by neuroscientist Lisa Genova. Fifty-year-old Alice Howland has been living what she deems a successful life: she is married with children, and has a strong career and a home on the Cape. But with the onset of her Alzheimer’s, she struggles to maintain her lifestyle. As her mind begins to change, she starts to wonder, is she still Alice? Deeply touching.
The Wildernessa novel by Samantha Harvey. A gripping novel about a man who is losing his past to Alzheimer's.
Animal Dreams by Barbara Kingsolver. A complex novel about love, forgiveness, and one woman's struggle to find her place in the world.
Doris Inc.: A Business Approach to Caring for Your Elderly Parents Proven strategies for finding balance in your life and career while maximizing the quality of life for an elderly person.
Understanding Difficult Behaviors, Some Practical Suggestions for Coping with Alzheimer's Disease and Related Illnesses by Anne Robinson
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias by Nancy L. Mace and Peter V. Rabins
The Forgetting. Alzheimer’s: Portrait of an Epidemic by David Shenk
Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers by Daniel Kuhn and David A. Bennett. New research findings, treatment approaches, and information on the three key areas of Alzheimer’s disease: medical aspects, day-to-day care, and care for the caregiver.
The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems by P. Murali Doraiswamy, Lisa Gwyther and Tina Adler. A wealth of information about testing and treatment methods, strategies for coping once you have a diagnosis, strategies for how to cope after diagnosis, and a guide to what to expect during different stages of Alzheimer’s.
Tangles: A Story about Alzheimer’s, My Mother, and Me by Sarah Leavitt. In spare black-and-white drawings and clear, candid prose, Sarah shares her family’s journey through a harrowing range of emotions—shock, denial, hope, anger, frustration—as her mother becomes all but emotionally unrecognizable. All the while she is learning to cope, and managing to find moments of happiness. A narrative spanning two three generations of complicated family dynamics.
The Story of my Father by Sue Miller. Her memoir (which was difficult to write) captures her struggle watching her father, once a devoted church historian, become confused by time and chronology.
The Last of His Mind: A Year in the Shadow of Alzheimer's by John Thorndike. For a year, in a house filled with file cabinets, photos, and letters, John explored his father’s mind, his parents’ divorce, and his mother’s secrets. The Last of His Mind is the bittersweet account of a son’s final year with his father, and a candid portrait of an implacable disease.
Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia by Kate Whouley. A tender story that shows how caring for a family member with Alzheimer's affects not just the patient but the caregiver herself.
Through the Wilderness of Alzheimer's: A Guide in Two Voices by Robert Simpson and Anne Simpson. Husband and wife share their experiences from each of their perspectives after finds out he has Alzheimer’s disease. Through conversations, journal entries, letters and prayers they show their journey from onset to diagnosis to treatment.
Jan's Story: Love Lost to the Long Goodbye of Alzheimer’s by Barry Petersen. Though Barry has spent his long-time, award-winning television career covering wars and events that shaped the world, he was not even slightly prepared for what happened to his darling wife, Jan, also a journalist, and how it would impact his life. 

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Back to regular programming, as they say:


On Vanishing: Mortality, Dementia, and What It Means to Disappear by Lynn Casteel Harper.

       "A compassionate collection of essays examining dementia from an unusually hopeful point of view . . . Harper moves smoothly between abstract reflections and concrete experiences, reflecting often on the effects of dementia on her grandfather and on her relationship with him, her fears that a genetic link to the disease may have been passed down to her, and her encounters with many individuals, all described in strikingly specific terms, surviving dementia in their own ways . . . Moving insights into a situation many will face." —Kirkus Reviews

       "This inspiring work takes us far from our often-arrogant efforts to vanquish (cure) dementia to seeing human vanity in another light. How do we envision vanishing and disappearance in the face of progressive cognitive decline? In On Vanishing, Lynn Casteel Harper holds a mirror to society and asks us to reflect . . . Just what does dying with dementia tell us about the human condition, both in the details of individual lives and in the grand scope of society? . . . In these troubled times of environmental deterioration and social injustice, can we learn to create more compassionate civilizations that celebrate caring?" —Peter J. Whitehouse, MD, author of The Myth of Alzheimer's
Practical Dementia Care (Peter V Rabins and Constantine G Lyketsos with Cynthia D Steele) For health care professionals.
When Reasoning No Longer Works: A Practical Guide for Caregivers Dealing With Dementia & Alzheimer's Care by Angel Smits. Bulleted lists clearly explain:

How to avoid a catastrophic reaction

Specific approaches for aggressive behavior

How to deal with disruptive behaviors

Ways to diminish wandering

What to do when a wanderer is missing

When to look for outside help

You'll also follow the story of Lou and Rose, a couple who share their lives with Alzheimer's disease. Together, they find the answers to questions caregivers and victims are sometimes afraid to ask.
Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers by Daniel Kuhn
‘The Last Ocean’ Considers Dementia in All Its Uncertainty (John Williams, NY Times, 8-17-19). An interview with Nicci Gerrard, author of The Last Ocean: A Journey Through Memory and Forgetting."Dementia is everywhere: if not you, then someone you know. This is a book about being vulnerable, frail, at the mercy of others. It’s also full of stories of courage, love, hope, even joy. It’s about what it is to be human, what it is to say goodbye."
Contented Dementia by Oliver James. Lots of tips, such as Focus on what's left, not what's lost. Never ask questions (coming up empty for answers can be frustrating). Dementia affects short term memory more than long-term memory. Larissa MacFarquhar writes about Oliver James's approach briefly in an interesting New Yorker articleThe Comforting Fictions of Dementia Care (10-8-18), well-worth reading for the insights it gives into the confusion and mistrust and confusion that come from losing one's memory and being lied to to various degrees and about different things by various caregivers.
On Pluto: Inside the Mind of Alzheimer's by Greg O'Brien. This is a book about living with Alzheimer’s, not dying with it. "Greg O'Brien's first-hand account of his own disease process will force us all to rethink the way we deliver care."
Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande. “It is not death that the very old tell me they fear,” he writes. “It is what happens short of death.” But we don’t think about it enough, and we talk about it even less. In the chapter "Letting Go," he talks about the powerful effect of frequent conversations about goals and wishes at the end of life — not just bland, advanced medical directives in writing but continuing talks out loud. When dementia is likely, these talks may need to take place much earlier.
Being My Mom's Mom by Loretta Anne Woodward Veney. Every day with a person suffering from dementia can be different, writes Veney, which requires you “to love each of the different people your loved one may become.”
Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste
Can't Remember What I Forgot: Your Memory, Your Mind, Your Future by Sue Halpern. About the experience and neuroscience of Alzheimer's. What neural scientists know about the causes and course of Alzheimer’s disease and other dementias. At Rounds she discusses the experiences of people with failing memories and what we can all do to improve or preserve our memory. She debunks some of the more common myths about Alzheimer’s diseases and normal memory loss and provides us with information about important discoveries being made in these fields.
A Caregiver's Guide to Dementia: Using Activities and Other Strategies to Prevent, Reduce and Manage Behavioral Symptoms by Laura N. Gitlin and Catherine Verrier Piersol. (Review in Washington Post: Strategies for managing a loved one with dementia (Nancy Szokan, 9-22-14, gives examples in her helpful review)
Creating Moments of Joy: A Journal for Caregivers (4th edition, Jolene Brackey). "When a person has short-term memory loss, his life is made up of moments. But if you think about it, our memory is made up of moments, too. We are not able to create a perfectly wonderful day with someone who has dementia, but it is absolutely attainable to create a perfectly wonderful moment; a moment that puts a smile on their face, a twinkle in their eye, or triggers a memory. Five minutes later, they won't remember what you did or said, but the feeling you left them with will linger."
The Caregivers: A Support Group's Stories of Slow Loss, Courage, and Love by Nell Lake. Here's a long piece adapted from it: Caregiving in the Age of Long Decline (Nell Lake, Guernica, 1-15-14).
• • • • Losing My Mind: An Intimate Look at Life with Alzheimer's by Thomas DeBaggio (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness)
Jan's Story: Love lost to the long goodbye of Alzheimer's by Barry Petersen
I Like You Just Fine When You're Not Around by Ann Garvin. "I was intrigued by the strength of the main character, Tig Monahan, whose life begins to unravel as she comes to terms with her mother's advancing Alzheimer's. Though Tig makes mistake after mistake, she never gives up. As the chapters flew by, I laughed, I cried, I smiled. And when I turned the last page. I found myself feeling proud of Tig and looking up to her unwavering hope and strength of spirit." --First for Women
Keeper: One House, Three Generations, and a Journey into Alzheimer's by Andrea Gillies (reviewed in the NY Times by Paula Span).
Daily Comforts for Caregivers by Pat Samples (meditations for caregivers)
The Majesty of Your Loving; A Couple's Journey Through Alzheimer's by Olivia Ames Hoblitzelle. Practical and spiritual wisdom about facing (together) a disease that changes who a person is or seems to be.
Self-Care for Caregivers: A Twelve Step Approach by Pat Samples, Diane Larsen, and Marvin Larsen
Waiting for the Forgetting to Begin (Nancy Sterns Bercaw, author of the book Brain in a Jar: A Daughter's Journey Through Her Father's Memory "Using the jarred brain as a teaching tool, my dad showed my 8-year-old self the difference between frontal and temporal lobes. He also pointed out how brains with Alzheimer’s disease become smaller, and how wide grooves develop in the cerebral cortex. But only after his death — and my mother’s confession about whose brain occupied that jar — did I figure out that my father was quite literally demonstrating how this disease runs through our heads."
Where the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley. The story of the author's mother's illness—called primary progressive aphasia—from her early-onset diagnosis at the age of 62 on. A candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering. Reviewed, with Q&A, as An Adult Daughter's Memoir Chronicles the Ripple Effects of Diagnosis on Family (on Michael J. Fox's blog).
The Healthy Brain Initiative (CDC, a call to action and a guide to help implement a coordinated approach to moving cognitive health into public health practice). Click here for the full report (PDF).
My Father's Brain by Jonathan Franzen (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001). See PDF, chapter 1
Keeper: One House, Three Generations, and a Journey into Alzheimer's by Andrea Gillies (reviewed in the NY Times by Paula Span)
The Long Hello ~ The Other Side of Alzheimer's by Cathie Borrie. From Martha Stettinius's review: Over seven years Borrie wrote down or recorded on a tape-recorder her conversations with her mother. She shows us how her mother remained through these years "one hundred percent of who she is"--a groundbreaking way to view dementia when so often it's described as a slow death or a "long good-bye."
Iris Murdoch As I Knew Her by A.N. Wilson. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris.
Do You Remember Me?: A Father, a Daughter, and a Search for the Self by Judith Levine. The memoir of a daughter coming to terms with a difficult father who is sinking into dementia and an insightful exploration of the ways we think about disability, aging, and the self as it resides in the body and the world.
Alzheimer's Reading Room (caregiver Bob DeMarco's site, rich in current information, research, caregiver tools, advice, and insight into Alzheimer's disease)
An Alzheimer's Reading List (Kent Russell, New Republic, 9-30-14)

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Films, documentaries and 'shorts' about dementia


Often available on Amazon, Netflix, from libraries, etc. For items purchased from an Amazon link here, we get a small commission, which helps support work on this website.
The Bob and Diane Fund An award for visual storytelling about Alzheimer's and dementia. The Bob and Diane Fund provides an annual $5,000 grant for visual storytellers—photographers, video producers, multimedia artists— to support the completion, publication, exhibition and/or screening of photography and/or multimedia work fthat documents Alzheimer's disease and dementia.
Age Old Friends. John (played by Hume Cronyn) chooses to live in retirement home rather than with his daughter, and befriends Michael (played by Vincent Gardenia). When his daughter (played by daughter Jessica Tandy) again invites him to live with her, he's faced with decision whether to escape the retirement home or stay to help Michael cope.
Alive Inside: A Story of Music & Memory . Documentary follows social worker Dan Cohen as he fights against a broken healthcare system to demonstrate music's ability to combat memory loss. Available on Netflix streaming.
Legendary Songwriter with Alzheimer’s Releases His Final Epic Ballad (YouTube video, on TheAlzheimer'sSite, of Glen Campbell singing "I'm Not Gonna Miss You")
Aurora Borealis. Grandfather with dementia (played by Donald Sutherland) needs more care than his wife (played by Louise Fletcher) can manage. Young Duncan (Joshua Jackson, grieving loss of his father) and a home health aide (Juliette Lewis) become friends caring for him, in indie film.
Away from Her (Julie Christie stars, 2007). An elderly couple, married almost 50 years, have a wonderful life together, until her Alzheimer's makes their life more difficult). Somewhat different ending from the book.
Firefly Dreams. Japanese film about teenager sent to country to work for aunt and uncle--and reluctantly cares for aging woman with Alzheimer's, slowly growing close to her. See trailer on YouTube.
In My Mother's Eyes (short video on YouTube, Tom Tripp, An Alzheimer's story).
Iris. English novelist Irish Murdoch (played by Kate Winslet and Judy Dench), vivacious nonconformist, faces onset of Alzheimer's, cared for by loving husband (played by Hugh Bonneville). Based on John Bayley's memoir, Elegy for Iris
The Man Who Wasn't There: Investigations into the Strange New Science of the Self. Anil Ananthaswamy writes about what happens when our sense of self is compromised, how our how our body feels, for example, when our narrative, autobiographic self is damaged. He writes about Alzheimer’s, among other diseases and disorders.
The Notebook. Tearjerker in which Noah (played by James Garner) reads to his wife (played by Gena Rowlands) from his notebook, trying to rekindle her memories of their life together. Ryan Gosling and Rachel McAdams play the couple when young. Based on book by Nicholas Sparks.
The Savages (Laura Linney and Philip Seymour Hoffman). The estranged children of a difficult father grudgingly reunite to take care of him.
A Song for Martin. Swedish film about composer-conductor and violinist who meet and marry in middle age, and face diagnosis of his Alzheimer's soon after. Realistic depiction of caregiving as disease strips patient of memory and personality.
The Theft of Memory: Losing My Father, One Day at a Time by the remarkable writer Jonathan Kozol. PW: “The author’s approach is shrewd yet warmly empathetic; he is curious about how the mind’s gradual breakdown exposes its machinery, and raptly attuned to the emotional effects of these changes on his parents and himself. The result is a clear-eyed and deeply felt meditation on the aspects of family that age does not ravage.”
Why I filmed mum's dementia battle (Sunday Express) Film-maker Lee Pearse documented his mother's struggle with a rare form of the disease --frontotemporal dementia-- in a bid to help others.
Dementia: The Forgotten Disease (watch this 10-minute documentary online, free)
Dementia Films (Programs for Elderly, clips from and descriptions of many films about dementia)
Reel life: the biographical films bringing joy to people with dementia (Juliette Jowit, The Guardian, 5-31-17) Jo is watching her own life story on television. See how she reacts. My Life Films combine music, photos, clips and interviews to celebrate the lives of those with dementia – and help carers build better patient relationships. “There is nothing positive about dementia, [but] in a way we bring a little bit of good into their lives, it’s a celebration,” says Jorg Roth, who set up the UK charity with his wife Carolin. “I talked to a gerontologist friend: I thought it was the entertainment value; she said no, it’s the journey, it’s the interest we show in somebody, it’s family coming together.”

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RESOURCES HELPFUL IN DEMENTIA CARE


Navigating the Health Care System (AlzAlive) A well-organized source of helpful information (from many angles) about managing life for someone with dementia. "The specter of Alzheimer's disease and dementia is going to knock you for a loop. We've created this series to lend a guiding hand through the maze of health care, from diagnosis to end stage. You're not alone." Search under these categories:
---In-home care
---Day care
---Community
---Companions
---Long-term care
---Palliative care
---Websites
---Biography-based care. First, Download the Biography Template from When Caring Takes Courage by Mara Botonis, and fill in all the blanks about a person's historic preferences, habits, etc.

 

Must-Read Books for Alz Caregivers

as recommended by Alz-Alive.
When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer's and Dementia Caregivers by Mara Botonis
---Articles by Mara Botonis
---Symptom Tracker This tool was designed to help the family caregiver track the type and frequency of the symptoms your loved one is exhibiting to support better communication and planning with your medical team and other healthcare providers as you collaborate in identifying the best possible treatment and interventions based upon your specific situation.
---Template for biography-based care
Love and Forgetting: A husband and wife's journey through dementia by Julie Macfie Sobol and Ken Sobol. Julie Macfie Sobol wakes up to a whirlwind of blankets: her husband, Ken Sobol, is tearing the bed apart.…
An Author's Story For the past 15 years, Louise Penny and her husband Michael Whitehead have lived just outside of the small town of Sutton, in the Eastern Townships of Quebec. Read their story online (four pages).
Hateship Friendship Courtship Loveship Marriage contains Alice Munro's story story "The Bear Came Over the Mountain," which follows the lives of an elderly married couple who struggle to maintain the connection in their imperfect yet loving marriage, after the wife, Fiona, is diagnosed with Alzheimer’s.
Still Alice by neuroscientist Lisa Genova. Fifty-year-old Alice Howland has been living what she deems a successful life: she is married with children, and has a strong career and a home on the Cape. But with the onset of her Alzheimer’s, she struggles to maintain her lifestyle. As her mind begins to change, she starts to wonder, is she still Alice? Deeply touching.
The Wildernessa novel by Samantha Harvey. A gripping novel about a man who is losing his past to Alzheimer's.
Animal Dreams by Barbara Kingsolver. A complex novel about love, forgiveness, and one woman's struggle to find her place in the world.
Doris Inc.: A Business Approach to Caring for Your Elderly Parents Proven strategies for finding balance in your life and career while maximizing the quality of life for an elderly person.
Understanding Difficult Behaviors, Some Practical Suggestions for Coping with Alzheimer's Disease and Related Illnesses by Anne Robinson
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias by Nancy L. Mace and Peter V. Rabins
The Forgetting. Alzheimer’s: Portrait of an Epidemic by David Shenk
Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers by Daniel Kuhn and David A. Bennett. New research findings, treatment approaches, and information on the three key areas of Alzheimer’s disease: medical aspects, day-to-day care, and care for the caregiver.
The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems by P. Murali Doraiswamy, Lisa Gwyther and Tina Adler. A wealth of information about testing and treatment methods, strategies for coping once you have a diagnosis, strategies for how to cope after diagnosis, and a guide to what to expect during different stages of Alzheimer’s.
Tangles: A Story about Alzheimer’s, My Mother, and Me by Sarah Leavitt. In spare black-and-white drawings and clear, candid prose, Sarah shares her family’s journey through a harrowing range of emotions—shock, denial, hope, anger, frustration—as her mother becomes all but emotionally unrecognizable. All the while she is learning to cope, and managing to find moments of happiness. A narrative spanning two three generations of complicated family dynamics.
The Story of my Father by Sue Miller. Her memoir (which was difficult to write) captures her struggle watching her father, once a devoted church historian, become confused by time and chronology.
The Last of His Mind: A Year in the Shadow of Alzheimer's by John Thorndike. For a year, in a house filled with file cabinets, photos, and letters, John explored his father’s mind, his parents’ divorce, and his mother’s secrets. The Last of His Mind is the bittersweet account of a son’s final year with his father, and a candid portrait of an implacable disease.
Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia by Kate Whouley. A tender story that shows how caring for a family member with Alzheimer's affects not just the patient but the caregiver herself.
Through the Wilderness of Alzheimer's: A Guide in Two Voices by Robert Simpson and Anne Simpson. Husband and wife share their experiences from each of their perspectives after finds out he has Alzheimer’s disease. Through conversations, journal entries, letters and prayers they show their journey from onset to diagnosis to treatment.
Jan's Story: Love Lost to the Long Goodbye of Alzheimer’s by Barry Petersen. Though Barry has spent his long-time, award-winning television career covering wars and events that shaped the world, he was not even slightly prepared for what happened to his darling wife, Jan, also a journalist, and how it would impact his life. 

 


Congressional Inquiry into Alzheimer’s Drug Faults Its Maker and F.D.A. (Pam Belluck, NY Times, 12-29-22) The report said the F.D.A.’s approval process for Aduhelm was “rife with irregularities” and criticized Biogen for setting an “unjustifiably high price.” It found that Biogen, Aduhelm’s manufacturer, initially priced the drug at $56,000 a year because it wanted a “blockbuster” that would “establish Aduhelm as one of the top pharmaceutical launches of all time,” even though it knew the high price would burden Medicare and patients. Aduhelm's campaign planned to target doctors, patients, advocacy groups, insurers, policymakers and communities of color, who were drastically underrepresented in its clinical trials of the drug.
---STAT News (12-29-22) reported that the Food and Drug Administration’s review and approval of a controversial Alzheimer’s drug was “rife with irregularities,” including dozens of undisclosed calls and emails with Biogen and an “inappropriate” level of coordination between the drugmaker and regulators, a congressional investigation concluded.
---8 key takeaways from congressional investigation (Rachel Cohrs , Adam Feuerstein and Damian Garde, The Aduhelm Files, STAT, 12-29-22): FDA officials failed to document communications with Biogen. Internal clashes caused last-minute chaos at the FDA. Collaboration between the FDA and Biogen was ‘atypical’. Biogen was banking on a blockbuster. The company was ‘pushing the limit’ on price. Biogen knew Aduhelm would be a budget-breaker. The FDA proposed allowing Aduhelm for all Alzheimer’s patients. Biogen aimed to target communities of color with marketing, not clinical data. (In the two pivotal studies used to win FDA approval, only 3% of participants were Hispanic and 0.6% were Black.)
---The full report: The High Price of Aduhelm’s Approval: An Investigation into FDA’s Atypical Review Process and Biogen’s Aggressive Launch Plans
Aricept vs. Adlarity for Alzheimer’s-Related Dementia (Alyssa Billingsley, GoodRx Health, 4-4-22) Key takeaways:
--- Donepezil (Aricept, Adlarity) is a first-choice medication used to treat Alzheimer’s-related dementia. It can be used in people with mild, moderate, and severe disease.
--- Aricept is the oral version of donepezil. It’s available as a regular tablet and an orally disintegrating tablet (ODT). Adlarity is the transdermal patch form of donepezil.
--- Aricept has been around for almost 30 years. Adlarity is a new option that may be more convenient for certain people or their caregivers.

So, how do donepezil tablets and patches compare? Is it worth making the switch? Billingsley spells out the key differences between Aricept and Adlarity.
Mouse experiments with a decades-old drug suggest a new approach to Alzheimer’s treatment (Megan Molteni, STAT, 10-11-21) A generic drug used widely to treat swelling associated with hypertension and heart failure showed hints in early research that it may also prevent the devastating brain damage of Alzheimer’s disease, a surprising twist that suggests scientists have a lot more to learn about the root cause of the neurodegenerative condition. The findings, reported in Nature Aging, show how the drug, bumetanide, reversed signs of Alzheimer’s in mice, as well as in human brain cells in lab dishes. The new study also detailed real-world data mined from millions of patients’ electronic health records showing that people over the age of 65 who regularly took bumetanide were 35% to 75% less likely to be diagnosed with Alzheimer’s.
Location Devices and Trackers for Dementia (Tech-enhanced Life) The basic concept of a location device or tracker for dementia is that the person with dementia carries with them some type of small "thing" (a tag or smartphone or watch, for example) that is capable of "knowing" where it is, and communicating that information. This piece covers how to select the right product, and what features and tradeoffs matter in different situations.
Top Alzheimer's Product Picks (Alzheimer's Store). Items include a dementia day clock with easy-to-read displays; a patient monitor with remote voice alert; pill dispensers; emergency medical alert bracelet; a memory picture phone (with a photo on the button for each person called regular)
Medications for Memory (Alzheimer's Association) Although current medications cannot cure Alzheimer’s or stop it from progressing, they may help lessen symptoms, such as memory loss and confusion, for a limited time.
Alzheimer's: Dealing with family conflict (Mayo Clinic, 9-5-15) Alzheimer's disease can cause stress for families. Work through family conflicts together so that you can focus on what's important.
Alzheimer's Therapy Products ~ Comfort and Security. For example, a memory picture telephone (with ten pictures of friends and family, one of which can be used for 911 calls), a door guardian, an automatic pill dispenser, GPS tracking devices (including a wandering GPS watch), music therapy products, the Reminder Rosie recordable alarm clock, Safe Wander bed alarm sensor (a wearable sensor that alerts wandering on your mobile device), art ball (a fidgeting toy), a twiddle activity muff, a special TV remote, a wireless remote alarm pad for bed and chair.
Teepa Snow has been helpful to many caregivers, with videos, newsletters, training. Also care products: Weighted blankets and Care Zips (the blankets provide the comfort of feeling held and the Care Zips are long pants with zippered inside seams so it's easier and more dignified to change briefs).
Sleep and Alzheimer's (Jennifer Walker-Journey, The Mattress Nerd,8-26-2020) Common sleep disorders for Alzheimer's patients include sundowning, insomnia, sleep-wake rhythm disorders, restless leg syndrome, sleep apnea, and depression. Also includes section on mattresses.
Alzheimer's: Managing sleep problems (Mayo Clinic) If you're caring for a loved one who has Alzheimer's, sleep disturbances can take a toll on both of you. Here's help promoting a good night's sleep.
The New Breed of Service Dog: Canine Caregivers for Dementia and Alzheimer’s Patients (Rover) Information about the benefits a service or therapy dog can provide to those enduring some form of dementia.
Alzheimer's Reading Room (caregiver Bob DeMarco's site, rich in current information, research, caregiver tools, advice, and insight into Alzheimer's disease)
Alzheimer's, resources for caregivers (David Shenk's site for The Forgetting)

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Music, art, mood, conversation, and memories


VTS can be used to help build conversations with people with dementia. (Siobhan McDonald, VTS, 6-22-21) How Visual Thinking Strategies (VTS) Facilitators help elders with memory loss interact with art and art history through VTS in a Memory Café (an event, not a place). Therapists using carefully chosen works of art are used to the magic of witnessing the moment someone with memory loss gets excited about something they see—that moment is unique to each group. No matter what challenges they are facing in the present, these shared experiences are enriching, comforting, and life affirming. Many museums, pre-pandemic, scheduled monthly programs, inviting those with dementia to come with a caregiving partner for a VTS experience in a museum space. It can take a minute or more for someone with dementia to process a question so it’s especially important to allow that time when doing VTS with this demographic.
Despite his Alzheimer's, Tony Bennett prepares to perform with Lady Gaga (Anderson Cooper, 60 Minutes, 10-3-21) In his performance at Radio City Music Hall, the 95-year-old singer used no notes or cue cards to remember the words and tunes to his classic numbers, and he performed an hour-long set from memory, but afterward he didn't remember doing the show. Nor does he know he has Alzheimer's, though his case is clearly advanced.
Spine-tingling moment ballerina with Alzheimer’s remembers routine to Swan Lake (Video, Classic FM) A video widely circulated of the wonderful moment Marta C. González, a former New York City Ballet prima ballerina living with Alzheimer’s, recognizes the sound of Tchaikovsky’s Swan Lake and responds to it physically. Click on second image.
Connecting through music (video, Teepa Snow) Teepa recommends using music at least twice a day for both providers and those living with dementia. It's a powerful resource that can lift spirits, stimulate or calm behavior, and provide meaningful connection even when communication is limited. Because rhythm is a skill typically preserved in those affected by dementia, music becomes a gift and a valuable tool, if you know how to use it. Use it with activity to promote a sense of value, and meaning or purpose; to help relax, calm, or change a mood. Music allows a brain to organize as well, promoting arousal and movement for those who may have trouble getting started or energized. Emotional memories are hard-wired in the brain rythmically. Music is an effective and often quick way to elicit a sense of peace, joy, remembrance, and positive feelings for everyone.
Anne Basting On Asking People With Dementia 'Beautiful Questions' (Shannon Henry Kleiber, To the Best of Our Knowledge) Listen to her 22-minute talk: When art is the only medicine (YouTube video, MacArthur Fellow Anne Basting, TEDxUWMilwaukee, 22 minutes, 12-1-14) Basting posits that art is the soft tissue that brings people into relationship, even in extreme situations like Alzheimer's. Forgetting memory and opening imagination can open worlds in which people can find and connect with each other -- easing isolation and drawing us into meaningful and healing relationship. Instead of asking questions with answers, such as "Where did you grow up?", ask open, beautiful questions, such as "What is something you treasure in your home and why?" (one answer: My oven, followed by the story behind the answer.) "What is the most beautiful sound in the world? And can you make it?" "If you could go anywhere in Milwaukee, where would you go?" (To a swimming pool. To take a shower.) Our care systems are designed to manage behavior, not to bring people into meaningful engagement. People need relationships, and there are artful ways to facilitate this.
Take a Look at These Unusual Strategies for Fighting Dementia (Christopher F. Schuetze, NY Times, 8-22-18) It is part of an unorthodox approach to dementia treatment that doctors and caregivers across the Netherlands have been pioneering: harnessing the power of relaxation, childhood memories, sensory aids, soothing music, family structure and other tools to heal, calm and nurture the residents, rather than relying on the old prescription of bed rest, medication and, in some cases, physical restraints.
Conversation starters for seniors in dementia (Weatherly Inn) "Remember, most older adults or people living with dementia know that they are confused. They then may feel "lost" or scared, which can make it worse. Often, it may seem like a challenge to get them to move away from one-word answers and help them refocus. Don't give up."

Not so fast! In a discussion of the topic of music and memory on the listserv of the Association of Health Care Journalists, journalist Aliyah Baruchin posted this: "While music can decrease agitation and depression in Alzheimer's patients -- which is a huge benefit to patients and their caregivers -- it has absolutely no effect on memory, cognition, or disease progression. Alzheimer's patients tend to 'remember' and respond to the music they grew up with because their long-term memory is far better preserved than their shorter-term memory. But music is not a 'treatment' for Alzheimer's in any way." Musical skills that become embedded in long-term memory (as with a professional musician, or as in our often greater emotional response to the songs from our childhood than to more recent music) may be the last to go, especially after shorter-term memories, but that may have something to do with how dementia affects the neurology of musical skills and memories.
Dan Cohen's Music & Memory Program and the Making of Alive Inside! (video documentary, posted 4-14-16) An astonishing look at how dementia and Alzheimer's patients are being revitalized through a unique program of personalized music. It's not a cure and it sounds impossible, yet minds and memories which seemed hopelessly lost are coming to back to life through the Music and Memory program. Meet Dan Cohen, the visionary who changed elder care forever, and Michael Rossato-Bennett, the filmmaker who chronicled that. In Can Music Help Keep Memory Alive? (Jill Suttie, Greater Good, 4-21-15), Suttie interviews Michael Rossato-Bennett (who made the video Alive Inside) and Dan Cohen. Rossato-Bennett says, "There is no drug that has any efficacy for that population, and there is something in the wiring of our minds that allows music to be experienced at such a level of resolution that it’s almost insane. The entire emotional system is still alive in these people—not completely maybe, but to a great extent—and it just so happens that music is the conduit to your deepest memories, your feelings, your deepest aliveness."
Man In Nursing Home Reacts To Hearing Music From His (original YouTube video excerpt from the documentary Alive Inside: : A Story of Music & Memory
Alive Inside: A Story of Music & Memory . Documentary follows social worker Dan Cohen as he fights against a broken healthcare system to demonstrate music's ability to combat memory loss. Available on Netflix streaming and as DVDs.
Music and Memory . This website links to many resources, including this video interview with Oliver Sachs, describing how the brain can respond to music despite severe dementia, in which one has lost language and event memory but retains music memories.
Gladys Wilson and Naomi Feil (YouTube video) Do watch this. Naomi Feil, founder of Validation Therapy, shares a breakthrough moment of communication with Gladys Wilson, a woman who was diagnosed with Alzheimer's in 2000 and is virtually non-verbal. See also Validation, communication through empathy (Naomi Feil | TEDxAmsterdamWomen) An honest, practical explanation of how to deal with people who it might be hard to get through to. How to empathize with a patient who at first turns you off.
292 Things to do with a Person who has Alzheimer’s Disease (Alzheimer's Association, Southeastern Wisconsin chapter)
Helping Alzheimer’s Patients Communicate Through Art (Sonya Stinson, Lively, formerly Great Call, 7-15-16)
Crafts and activities for People with Alzheimer's (Pinterest)
18 Reasons Why Getting a Pet Fish Can Keep You Healthy and Improve Your Life (Vivofish) which led to Study: Aquariums may pacify Alzheimer's patients (Purdue News, Aug. 1999)
Music and Memory Program--An Innovative Approach to Dementia Care Wisconsin DHS staff contacted Dan Cohen's MUSIC & MEMORY Project and, with creative funding (link is external), established the Wisconsin Music & Memory Program which trains and supports staff in the program as part of the DHS effort to improve the care of residents with dementia and decrease the use of harmful medications. The Wisconsin Music & Memory Program has successfully funded over 300 nursing homes to become certified MUSIC & MEMORY facilities.
Talking With Concetta Tomaino: The Power of Music ( Camille Peri, Caring.com, updated 12-15-16) Music can literally work wonders for people with Parkinson's, dementia, or strokes. says music therapist Tomaino. She talks about how music therapy works, how caregivers can use it, and why music is the last memory to go. She offers advice on using music early on to help people with Alzheimer's as the disease progresses. Tomaino is cofounder and director of the Institute for Music and Neurologic Function. "If you’re trying to get someone with a traumatic brain injury or a stroke or Alzheimer’s to walk, and you tell them, “Lift your legs and walk like this,” it’s a difficult concept for them. And if they have to plan how the left foot is moving in relation to the right foot, they have to think about where their body is in space and how to lift up their leg and put it down, and take steps. However, when they’re doing this to music, the rhythm provides the structure within which they move. And because they’re following the music, they’re not thinking about lifting each leg individually. It’s almost as if they’re using past memories of how to move with music....The other reason why music stays in somebody's memory is because of the emotional and historical aspects that are connected to it, both positive and negative....When somebody is nonverbal and seems to have minimal awareness, exposure to a song that we know to be personally important to that person can improve attention or awareness over time....On the negative side, sometimes when people become more aware, this can be upsetting because all of a sudden they realize they aren't at home."
Music Can Help Families Living With Alzheimer's (Jess Ludwig, AARP, 12-21-10)
Music stirs memories for people with dementia (Karen Garloch, Charlotte Observer, 4-12-16) Southminster resident John Robison responds to crooners Frank Sinatra, Nat King Cole. Familiar tunes, lyrics connect with long-term memory, provide calming influence.‘Alive Inside’ documentary tells the story of ‘Music & Memory’ creator Dan Cohen.
Activities for Dementia Patients: 50 Tips and Ideas to Keep Patients with Dementia Engaged (Angela Stringfellow, Seniorlink blog, 3-20-19)
20 practical activities for people living with Alzheimer' disease (Golden Carers)
Challenging the "tragedy" narrative for dementia.

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Dementia issues, news, and research

Groups historically under-included in research include Black and Latino individuals, those with less than a college degree, and those with lower income, says Dr. Rachel Nosheny, a co-investigator on the Brain Health Registry (BHR). This is both a scientific and an ethical issue. If new Alzheimer’s drugs aren’t tested in diverse populations, the treatments are less likely to work well for everyone.


The Alzheimer's Association's Healthy Brain Initiative (HBI), in partnership with CDC and Emory University, is proud to announce the launch of the new, free, interactive public health curriculum on health equity and dementia. Designed for public health professionals, students, and educators, this curriculum will serve as an excellent resource for the public health workforce to deepen their knowledge of the interactions of health equity and dementia.
Check-engine-light for the Brain: Part 1 (Tech-enhanced Life’s Substack, 7-10-23) We believe interventions like diet and exercise would be more widely adopted if coupled with a metric that showed where one stood on the "cognition" ladder, and whether or not it was declining (and how fast).
Check-engine-light for the Brain: Part 2 (Tech-enhanced Life’s Substack, 7-24-23) Screening Tools for Mild Cognitive Impairment. "We start exploring how to track changes in cognition over time, and explore whether the types of tests used by clinicians to screen for mild cognitive impairment are useful ingredients for the “check engine light for the brain” idea."
Check-engine-light for the Brain: Part 3 (8-7-23) We start to explore whether the types of tests used in online brain training games are suitable for tracking cognition changes over time--whether the measurement techniques developed for brain training games can be useful for our brain check-engine-light concept.

How We Diagnose Dementia: The Practical Basics to Know (Leslie Kernishan, Better Health While Aging: Practical information for aging health & family caregivers) Learn about various types of screening test.
The Real Costs of the New Alzheimer’s Drug, Most of Which Will Fall to Taxpayers (Arthur Allen, KFF Health News, 8-2-23) The first drug purporting to slow the advance of Alzheimer’s disease is likely to cost the U.S. health care system billions annually even as it remains out of reach for many of the lower-income seniors most likely to suffer from dementia. The annual cost of lecanemab treatment quadruples if the expense of brain scans to monitor for bleeds and other associated care is factored in. The full financial toll likely puts it beyond reach for low-income seniors at risk of Alzheimer’s, experts say.

       Medicare and Medicaid patients will make up 92% of the market for lecanemab, according to Eisai Co., which sells the drug under the brand name Leqembi. In addition to the company's $26,500 annual price tag for the drug, treatment could cost U.S. taxpayers $82,500 per patient per year, on average, for genetic tests and frequent brain scans, safety monitoring, and other care
Lilly drug slows Alzheimer's by 60% for mildly impaired patients in trial (Deena Beasley, Reuters, 7-17-23) Donanemab, an experimental drug from Eli Lilly, has been shown to slow progression of memory and thinking problems by about a third, but that rate doubles to 60% if the drug is started when patients are only mildly impaired, according to new trial data presented at the Alzheimer's Association International Conference in Amsterdam. Donanemab, like the recently approved Leqembi from Eisai (4523.T) and Biogen (BIIB.O), is an intravenous antibody designed to remove deposits of a protein called beta amyloid from the brains of Alzheimer's patients.

      Lilly said in May that the study had met all of its goals, showing that donanemab slowed cognitive decline by 29% compared to a placebo in people with mild cognitive impairment or mild dementia whose brains had deposits of two key Alzheimer's proteins, beta amyloid and tau. See Donanemab in Early Symptomatic Alzheimer Disease: The TRAILBLAZER-ALZ 2 Randomized Clinical Trial (JAMA, 7-17-23) "Whether the harms of these drugs are balanced by their modest clinical benefits will ultimately require more data," an editorial in JAMA alongside the study said.
Why understanding how spiders spin silk may hold clues for treating Alzheimer’s disease (Michael Landreh and Anna Rising, The Conversation, 6-10-23) Spiders making silk are "always flinging it around to get from place to place, always having a strong-as-steel safety line or spinning a comfy hammock whenever they need a rest....     

    "If we could understand and recreate the spinning process, we could produce artificial spider silk for a range of medical applications. For example, artificial silk can help regenerate the nerves that connect our brain and limbs, and can shuttle drug molecules directly into the cells where they are needed....

    "An important clue to how the droplets and fibres are related came from an unexpected area of our research – on Alzheimer’s and Parkinson’s diseases. Proteins that are involved in these diseases, called alpha-synuclein and tau, can assemble into tiny, oil-like droplets in human cells....

    "The surprising parallel between spider silk spinning and fibres toxic to humans could one day lead to new clues about how to fight neurodegenerative disorders.

    "Scientists may use spider silk research, including what we have learned about the spider silk domains, to keep human proteins from sticking together – to stop them from becoming toxic. If spiders can learn how to keep their sticky proteins in check, perhaps so can we."
F.D.A. Approves New Treatment for Early Alzheimer’s (Pam Belluck, NY Times, 1-6-23) The drug, Leqembi, may modestly slow cognitive decline in early stages of the disease but carries some safety risks. Still, data suggests it is more promising than the small number of other available treatments. Studies of the drug — an intravenous infusion administered every two weeks — suggest it is more promising than the scant number of other treatments available. Still, several Alzheimer’s experts said it was unclear from the medical evidence whether Leqembi could slow cognitive decline enough to be noticeable to patients.
Navigating the Health Care System (AlzAlive) A huge, well-organized source of helpful information (from many angles) about managing life for someone with dementia. "The specter of Alzheimer's disease and dementia is going to knock you for a loop. We've created this series to lend a guiding hand through the maze of health care, from diagnosis to end stage. You're not alone."
•Eisai is gearing up for a fight in Washington over access to its newly FDA-approved Alzheimer’s treatment, Leqembi (lecanemab) Right now, the medicine falls under a restrictive Medicare coverage policy developed based on data from a different drug that didn’t appear to work as well. (Aduhelm) 2-2023
Memory Decline Tied to Lifestyle Factors (Judy George, MedPage Today, 1-25-23) Healthy lifestyle slowed memory loss, even in APOE4 carriers. "Memory decline was slower for older adults who had a healthy lifestyle, even for people with high genetic risk for Alzheimer's disease, data from a Chinese study showed.
       "People 60 and older who had at least four of six favorable lifestyle factors -- healthy diet, exercise, social contact, cognitive activity, and no smoking or drinking -- had slower memory decline than those who had no more than one healthy factor, according to Jianping Jia, MD, PhD, of Xuanwu Hospital of Capital Medical University in Beijing, and co-authors."
How My Father's Brain Helped Develop More Effective Treatment For Alzheimer's (Rebecca Leventhal, Time, 1-14-23) Since he died, my father has helped pioneer the validation of effective treatments that weren’t available for him; research conducted on his brain tissue is helping scientists understand how to (hopefully) improve upon the recently FDA-approved lecanemab and develop even more effective treatment for Alzheimer’s disease. My father, who died of Alzheimer's, who did not have disease-modifying drugs available to him has demonstrated how Alzheimer's could potentially be stopped. He gets a chance to build for others the foundation he didn't have. 
       "On Nov. 29, 2022, at the 15th Clinical Trials on Alzheimer’s Disease (CTAD) Eisai presented its large Phase III randomized control trial of lecanemab, an anti-amyloid medication. The results showed that lecanemab slowed the decline of cognitive function, functional capacity, and quality of life for patients with early Alzheimer’s compared to a placebo. Like Aduhelm but unlike preceding medications, lecanemab wiped amyloid from patients’ brains. Importantly, unlike Aduhelm, lecanemab completed its clinical trials as intended and had much lower rates of swelling or bleeding. These results are understood to confirm that removing amyloid helps prevent cognitive decline."

    "He gets a chance to build for others the foundation he didn't have. There, in the Selkoe Lab, looking at images of lecanemab bound to my dad's brain tissue, I could see my dad balancing like a flamingo on the edge of a step stool."
Study: Alzheimer's drug shows modest success slowing declines in memory, thinking (Jon Hamilton,Shots, NPR, 11-30-22) An experimental drug that removes a substance called amyloid from the brain appears to slow down Alzheimer's disease. The drug, called lecanemab, reduced the rate of cognitive decline by 27% in a study of nearly 1,800 people in the early stages of Alzheimer's, scientists reported at the Clinical Trials on Alzheimer's Disease meeting in San Francisco. But Dr. Madhav Thambisetty of the National Institute on Aging, who was not involved in the study, called the results "a very small effect." Even so, 'lecanemab is "not a benign drug," Thambisetty says, adding that its risks may outweigh its benefits for some patients.'
       So far, only one amyloid drug, Aduhelm, has received approval from the Food and Drug Administration. That drug, also developed by Eisai and Biogen, was approved in 2021 despite conflicting evidence about whether it worked, and after an FDA advisory committee voted against approval. Sales of Aduhelm have been slow, largely because Medicare will only cover the drug for patients participating in a clinical trial. See Cost and controversy are limiting use of new Alzheimer's drug (Jon Hamilton, Morning Edition, NPR, 11-8-21)
Blots on a field? (Charles Piller, Science, 7-21-22) Charles Piller reports on news that the conceptual model for almost all treatment of Alzheimer's disease over the last few decades may rest on basic fraud.  Was it all a lie? Matthew Schrag, a neuroscience image sleuth at Vanderbilt, found signs of fabrication in scores of Alzheimer’s articles, threatening a reigning theory of the disease. He unearthed serious problems with research on a protein subtype of amyloid beta that has been a cornerstone of research and spending on Alzheimer's for over a decade. He identified apparently altered or duplicated images in dozens of journal articles.
What causes Alzheimer's? Study puts leading theory to 'ultimate test' (Jon Hamilton, All Things Considered, 11-1-22) Listen or read.
F.D.A. Approves Alzheimer’s Drug Despite Fierce Debate Over Whether It Works (Pam Belluck and Rebecca Robbins, NY Times, 6-7-21)"Aducanumab is the first new Alzheimer’s treatment in 18 years and the first to attack the disease process. But some prominent experts say there’s not enough evidence it can address cognitive symptoms. The drug, aducanumab, which will go by the brand name Aduhelm, is a monthly intravenous infusion intended to slow cognitive decline in people with mild memory and thinking problems. It is the first approved treatment to attack the disease process of Alzheimer’s instead of just addressing dementia symptoms."
How to Keep Alzheimer’s From Bringing About the Zombie Apocalypse (Jay Newton-Small, Time, 11-21-19) By 2050, about 14 million Americans will have Alzheimer’s, compared with some 5.7 million now. Combine the total with other related forms of dementia, and the number rises to almost 30 million people, or about 8% of the country’s total estimated population in 2050. This epidemic is arriving in a society poorly equipped to cope with it. The U.S. health insurance system is failing those with chronic and degenerative diseases. The country’s economy is structured to make it difficult at best—and in many cases impossible—to give adequate care to adults who cannot get through the day on their own, without help. We must devise fundamentally new ways to structure the care of Alzheimer’s patients. We must change how dementia is managed in a way that improves the quality of life of those who have the condition and also keeps it from derailing the lives of loved ones who care for them. And we have to think about how to pay for all of it.
• Wallack, Max and Carolyn Given. Why Did Grandma Put Her Underwear in the Refrigerator? (an explanation of Alzheimer's disease for children)

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The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades (Sharon Begley, STAT Plus, 6-26-19--requires subscription) In the 30 years that biomedical researchers have worked determinedly to find a cure for Alzheimer’s disease, their counterparts have developed drugs that helped cut deaths from cardiovascular disease by more than half, and cancer drugs able to eliminate tumors that had been incurable.Sharon’s story documents how a “cabal’’ of influential researchers, drug companies, academics, and journal editors "have long believed so dogmatically in one theory of Alzheimer's that they systematically thwarted the research and funding of scientists who wanted to pursue alternative theories of the disease that did not fit with conventional wisdom. How many years closer to a cure might we have been?
Predicting Alzheimer's (Judy George, MedPage Today, 7-16-19) Blood markers close in on helping determine who will develop Alzheimer's disease. "That gives [us] hope that there has to be an optimum combination of exosome biomarkers that, if you add them together, you will get the best information."

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Football, So Beautiful for Fans, Scars Players With Dementia (NY Times editorial, 2-6-16) The disease that increasingly haunts football — chronic traumatic encephalopathy, or C.T.E. — has symptoms like dementia, memory loss and depression. It is attributed to repeated blows to the head and can be diagnosed only posthumously. "The National Football League has introduced more protective playing rules and equipment to address the problem. But these changes occurred only after years of denial by the league and a $765 million damage settlement three years ago with more than 4,500 retired players." C.T.E.’s growing shadow across football extends to collegiate and high school programs, which should be increasingly concerned.
Damage Assessment (Patrick Hruby, Washington Post Magazine, September 2020) The quest to detect the degenerative brain disease CTE in the living and what it could mean for football’s concussion crisis....the inability to detect the disease in people such as [professional athlete Sean] Morey makes developing effective therapies almost impossible. But with detection, “We’d be able to begin clinical trials for new compounds to be able to treat the disease once it starts — and hopefully even prevent it if we can detect it early on,” says Robert Stern, the director of clinical research for Boston University’s CTE Center and an expert on the disease. “So the next critical step is to diagnose it during life.” A professional athlete for 10 seasons, Morey retired from the NFL in 2010 after doctors told him he had suffered too many concussions.
New law signed aims to better target Alzheimer’s prevention, treatment (Covering Health, AHCJ, 1-3-19) "The BOLD Act (Building Our Largest Dementia Infrastructure for Alzheimer’s) was signed into law on December 31, 2018. The BOLD Act authorizes $100 million over five years to develop a public health approach for improving prevention, treatment and care for Alzheimer’s patients by creating a national public health infrastructure to combat the disease and preserve brain health. It establishes Alzheimer’s Centers of Excellence with a focus on evidence-based interventions in Alzheimer’s disease. It also funds state and local public health departments to promote cognitive health, reduce risk, improve early detection and diagnosis, and better meet the needs of caregivers." See also CDC's Healthy Brain Initiative and CDC's Public Health Road Map Series. The BOLD Infrastructure for Alzheimer’s Act would increase implementation of the road map nationwide.
Alzheimer's Association
Clinical trials (National Institute on Aging)
Clinical trials (NINDS, National Institute of Neurological Disorders and Stroke)

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TrialMatch, a free matching service of the Alzheimer's Association that connects individuals with Alzheimer's, caregivers, and healthy volunteers to current clinical trials. See explanation of clinical trials.
Infectious Theory Of Alzheimer's Disease Draws Fresh Interest (Bret Stetka, Shots, NPR, 9-9-18) "Money has poured into Alzheimer's research for years, but until very recently not much of it went toward investigating infection in causing dementia. But this "germ theory" of Alzheimer's, as [Dr. Leslie] Norins calls it, has been fermenting in the literature for decades....If the germ theory gets traction, even in some Alzheimer's patients, it could trigger a seismic shift in how doctors understand and treat the disease. For instance, would we see a day when dementia is prevented with a vaccine, or treated with antibiotics and antiviral medications? Norins thinks it's worth looking into."
Language Barrier Means Millions of Elderly — Like My Grandmother — Lack Access to Alzheimer's Trials (Josh Eibelman, CommonHealth, WBUR, 10-12-18) Clinical Trials can be risky for patients and are far from guaranteed to help them, but there is no other way for drug companies and medical researchers to learn whether their experimental therapies are safe and effective. although companies and medical researchers around the country are in desperate need of volunteers for Alzheimer’s research, patients like my grandmother — and millions of other immigrants, mainly Spanish speakers — are blocked from participating because they don't have a good enough command of English.
For Scientists Racing to Cure Alzheimer's, the Math Is Getting Ugly (Gina Kolata, NY Times, 7-23-18) The task facing Eli Lilly, the giant pharmaceutical company, sounds simple enough: Find 375 people with early Alzheimer’s disease for a bold new clinical trial aiming to slow or stop memory loss. The Global Alzheimer’s Platform Foundation is helping recruit participants for the Lilly trial, but nearly 2,000 must pass the initial screening to be selected for further tests to see if they qualify and only 20 percent will meet the criteria to enroll in Lilly’s trial: They must be aged 60 to 89, have mild but progressive memory loss for at least six months, and have two types of brain scans showing Alzheimer’s is underway. And that's just one trial: There’s no way scientists are going to find 25,000 participants for all of the Alzheimer’s trials that have been approved.
This “city” for people with dementia is the future of memory care (Katharine Schwab, Fast Company, 8-20-18) The Copenhagen-based firm Nord Architects is building a series of centers for patients with Alzheimer’s and dementia that feel more like villages or cities, rather than bleak institutions. “It’s going back to how we did it before we institutionalized our way of treating elderly,” says one of the architects.

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New Alzheimer's Association Report Reveals Sharp Increases in Alzheimer's Prevalence, Deaths and Cost of Care (Press release, Alzheimer's Association, 5-30-18) Facts and figures.
New investment hopes to spur cure for dementia (Liz Seegert, Covering Health, 6-27-18) Alzheimer's disease is the sixth leading cause of death in the U.S. Despite decades of research, there's still no cure, and few options to slow or minimize symptoms. The last Alzheimer's drug was approved more than 15 years ago, but a new campaign, called Disrupting Dementia, hopes to drive new diagnostics and treatments while also supporting patients and families affected by this devastating condition. See Cultivating Innovation in Dementia Research. The Dementia Discovery Fund is a specialist venture capital fund that invests in novel science to create meaningful new medicines for dementia whilst delivering an attractive return for the fund investors.
Research Programs (NINDS, National Institute of Neurological Disorders and Stroke)
Alzheimer Research Forum (AlzForum)
FDA’s updated standards remove an unnecessary barrier to testing Alzheimer’s drugs (Howard M. Fillit, STAT, 3-5-18) After years of relying on outdated standards for evaluating new drugs for Alzheimer’s and other neurologic diseases, the FDA is finally modernizing its approach.
Higher brain glucose levels may mean more severe Alzheimer’s (Liz Seegert, Covering Health, AHCJ, 11-8-17) For the first time, scientists have found a connection between abnormalities in how the brain breaks down glucose and the severity of the signature amyloid plaques and tangles in the brain, as well as the onset of eventual outward symptoms of Alzheimer's disease. Correlation does not equal causation, but this study further supports the theory that glucose impacts development and severity of Alzheimer’s.
Trying To Solve The Alzheimer’s Puzzle (Melissa Bailey, Kaiser Health News, 1-30-17) Despite a 99 percent failure rate and another major setback last month, Alzheimer’s researchers are plowing ahead with hundreds of experiments — and a boost in federal money — to try to a crack a deadly disease that has flummoxed them for decades. Decades of research have not produced a single drug that alters the disease’s course. Scientists aren’t giving up on the main hypothesis behind many clinical trials: that Alzheimer’s can be defeated by using drugs to attack amyloid “plaques” that build up in the brain of Alzheimer’s patients. Other scientists are targeting what they believe is the true culprit, the protein tau, which creates “tangles” in the brain, the disease’s other primary marker. Patients can access only four Food and Drug Administration-approved Alzheimer’s drugs that alleviate symptoms but do not prevent, slow or reverse brain damage. Observational studies have shown that people who exercise more and have healthier diets seem to get the disease later in life. A study in JAMA in November found that even as scientists have made no progress in changing Alzheimer’s course, overall dementia rates, which include Alzheimer’s and other dementias, appear to be dramatically declining.
Alzheimer's disease links family with rare gene to Pitt research in compelling book (Gary Rotstein, Aging Edge, Pittsburgh Post-Gazette, 3-6-17) In 2009, freelancer Niki Kapsambelis met seven members of the DeMoe family from North Dakota as they came on their annual visit to participate in Alzheimer's research at the University of Pittsburgh’s Alzheimer Disease Research Center. As a family, they are susceptible to a rare genetic version of the disease that gives them a 50-50 chance of acquiring the disease as adults — and worse yet, before the age of 60. The family made a collective decision early on to do everything they could to contribute to research.

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Dodging Dementia: More Of Us Get At Least A Dozen Good, Happy Years After 65 (Judith Graham, KHN, 5-24-18) Statistically speaking, you'll enjoy a longer period with cognitive health if you get a college education
In Need of Brain Breakthroughs (Linda Childers, US News, 9-12-16) A look at where research stands on some of the most devastating brain diseases (with a focus on Parkinson's, brain cancer/tumors, Alzheimer's)
Is the Leading Theory About Alzheimer's Wrong? (Sarah Zhang, The Atlantic, 2-22-17) Last week, the pharmaceutical company Merck pulled the plug on a closely watched Alzheimer’s drug trial. The drug verubecestat, an outside committee concluded, had “virtually no chance” of benefit for patients with the disease. The failure of one drug is of course disappointing, but verubecestat is only the latest in a string of failed trials all attempting the same strategy to battle Alzheimer’s. That pattern of failure has provoked some rather public soul-searching about the basic hypothesis that has guided Alzheimer’s research for the past quarter century.
Brains With Alzheimer's Have More Bacteria Than Healthy Ones, Says New Study (David Nield, Science Alert, 7-19-17) Evidence is mounting. Now the researchers, from the University of Bristol in the UK, think there could be a link between these bacteria populations and the neuroinflammation that has previously been connected to the development of the disease.
Dismay as Alzheimer's drug fails in clinical trials (Hannah Devlin, The Guardian, 11-23-16) A drug that was seen as a strong contender to slow the progression of Alzheimer’s disease has failed to deliver in the final stage of clinical trials. Final-stage results dash hopes that solanezumab, an injectable antibody, would provide treatment breakthrough
U.S. Dementia Rates Are Dropping Even as Population Ages (Gina Kolata, NY Times, 11-21-16) A new study found that the dementia rate in Americans 65 and older fell by 24 percent over 12 years, to 8.8 percent in 2012 from 11.6 percent in 2000. That trend is “statistically significant and impressive,” said one demographer. "To assess dementia, participants were asked, among other things, to recall 10 nouns immediately and after a delay, to serially subtract seven from 100, and to count backward from 20. The test was based on extensive research indicating it was a good measure of memory and thinking skills."

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How one Colombian family could solve some of Alzheimer’s mysteries (Kenneth S. Kosik, STAT, 4-12-16) In a large clinical trial involving 300 family members from a family of 5,000 who may carry an early-onset Alzheimer's gene, half of the people who are young (years away from Alzheimer's and symptom-free will receive a drug that has been shown to decrease production of beta-amyloid, and half will take a placebo.
Norma-Jean, Alzheimer’s, and Electrodes by Wendy Bancroft. "In 2010, Dr. Lozano and his team began using deep brain stimulation to see if it could help people with early stage Alzheimer’s. The trial is progressing in three phases. In the first two phases, it was determined that the treatment worked best for those whose Alzheimer’s was at an early stage, and that there were significant differences between those in a treatment group and those in a control group. A third trial, launched early in 2015, looks at how varying the electrical current affects outcomes."
Deep Brain Stimulation Tested for Early Alzheimer's (Amy Norton, HealthDay, 7-28-16) Although treatment seems safe, benefit isn't yet clear.
More evidence in quest to repurpose cancer drugs for Alzheimer's disease (EurekAlert, Georgetown University Medical Center, 7-27-16) An FDA approved drug to treat renal cell carcinoma appears to reduce levels of a toxic brain protein linked to dementia in Alzheimer's and Parkinson's diseases when given to animals. The study found that the drug pazopanib decreases levels of phosphorylated Tau (p-Tau) in animal models genetically engineered to produce human mutant tau throughout their brains. There are two schools of thought in the Alzheimer's field as to the main culprit of the disease -- tau or amyloid beta.
Could Alzheimer’s Stem From Infections? It Makes Sense, Experts Say (Gina Kolata, NY Times, 5-25-16) "Could it be that Alzheimer’s disease stems from the toxic remnants of the brain’s attempt to fight off infection? Provocative new research by a team of investigators at Harvard leads to this startling hypothesis, which could explain the origins of plaque, the mysterious hard little balls that pockmark the brains of people with Alzheimer’s."
Today's misleading overselling the #microbiome - U. Chicago on Alzheimer's and gut microbes (Jonathan Eisen's blog, "The Tree of Life") Eisen criticizes (on Twitter as a "completely irresponsible interpretation of study") a piece in "Scientific Reports" that suggests a causative connection between antibiotics, changes in the gut microbiome, and reduced deposit of plaque associated with Alzheimer's -- a piece that has been picked up by various media. "But what they do not report on is any evidence of anything other than a correlation between the GI microbiome changes and the inflammatory markers and the reduced Aâ plaque deposition."
Why do more women get Alzheimer’s? Research points to genetics, other factors. (Fredrick Kunkle, WaPo, 9-3-14)
New Alzheimer’s treatment fully restores memory function (Science Alert, 3-18-15) Australian researchers have come up with a non-invasive ultrasound technology that clears the brain of neurotoxic amyloid plaques - structures that are responsible for memory loss and a decline in cognitive function in Alzheimer’s patients. Of the mice that received the treatment, 75 percent got their memory function back.
What can beagles teach us about Alzheimer’s disease? (Elizabeth Head, The Conversation, 1-9-15) When aged dogs show cognitive changes not caused by other systemic illnesses, they are related to brain changes that are strikingly similar to people. Exercise, social interaction, learning new tricks – participating in the same activities with our aged companion animals, the benefits will be twofold: for them and for us.
Study addresses safety concerns for older adults with diagnosed and undiagnosed dementia (American Geriatrics Society release, 6-22-16) People with probable dementia who had not been diagnosed were more likely to engage in potentially dangerous activities (such as driving, preparing hot meals, managing their own finances and medications, and attending doctors' appointments alone) than people who had been diagnosed.

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Understanding how chemical changes in the brain affect Alzheimer's disease (EurekAlert release, University of Western Ontario, 6-22-16) A study shows that long-term suppression of the neurotransmitter acetylcholine - a target for anticholinergic drugs - results in dementia-like changes in the brain. You may be as alarmed to find one of your medications on this list of commonly used drugs with moderate to high anticholinergic properties (Virginia Geriatrics).
Scientists use light to reactivate lost memories in mice with Alzheimer's symptoms (Peter Dockrill, Science Alert, 3-17-16)
Lawsuit Seeks to Legalize Doctor-Assisted Suicide for Terminally Ill Patients in New York (Anemona Hartocollis, NY Times, 2-3-15) A group of doctors and terminally ill patients are asking New York courts to declare that doctor-assisted suicide is legal and not covered by the state’s prohibition on helping people take their own lives. Assisted suicide — advocates prefer the term “aid in dying” — is legal in only a few states, including Montana, Washington, New Mexico, Oregon and Vermont. The author lays out the arguments for and against.

Breakthrough Replicates Human Brain Cells for Use in Alzheimer’s Research (Gina Kolata, NY Times, 10-12-14) "For the first time, and to the astonishment of many of their colleagues, researchers created what they call Alzheimer’s in a Dish — a petri dish with human brain cells that develop the telltale structures of Alzheimer’s disease....Within weeks they saw the hard Brillo-like clumps known as plaques and then the twisted spaghetti-like coils known as tangles — the defining features of Alzheimer’s disease." It may help researchers test drugs quickly, cheaply, and easily.
The coming Alzheimer’s crisis in America (Kathleen Parker, Washington Post, Opinions, 7-24-15) "By 2050, the group says, 13.8 million Americans may have Alzheimer’s disease, at a cost of $1.1 trillion per year, mostly to Medicare and Medicaid. Today, by comparison, 5.3 million have the disease....Among other scientific developments reported this week, researchers have isolated a “common ancestor” among all forms of dementia, including Alzheimer’s, Parkinson’s and Lewy body. “All are caused by misfolding proteins,” Carrillo explained.... Two different “misfolded” proteins — amyloid beta and tau — are toxic to brain cells. There is... a new drug that delivers a molecule scientists have created to “chaperone” these proteins so that they fold correctly." Other hope-inspiring developments include six diagnostic tools that, in combination, can be useful in predicting Alzheimer’s. ...For reasons unknown, women suffer Alzheimer’s at a higher rate — two-thirds of today’s sufferers are women."
Alzheimer's disease linked to heart's effect on the brain (Harriet Alexander, Sydney Morning Herald, 2-19-15) We are used to thinking of the brain as a dependent ward of the heart, not as a victim of its beat. But there is good evidence that exercise helps the heart become resistant to damage.
Cracking the Alzheimer's Code (Linda Marsa, Discover, March 2015) Are we close to conquering one of the most puzzling diseases of our time?
Diet May Be Linked to Lower Alzheimer’s Risk in Older People (Roni Caryn Rabin, Aging, NY Times, 4-16-10). Eat a diet rich in fish, poultry, fruit, nuts, dark leafy greens, vegetables like broccoli and cauliflower, and oil-and-vinegar dressing.
High Blood Sugar Linked to Dementia (Paula Span, NY Times, 8-9-13). People with diabetes face an increased risk of Alzheimer’s disease and other forms of dementia, a connection scientists and physicians can't explain.
Has Stanford University found a cure for Alzheimer's disease? (Sarah Knapton, Telegraph, 12-8-14) A drug which boosts the brain's immune response could prevent or cure Alzheimer's disease, new research suggests. Blocking EP2 in mice reversed memory decline. “Microglia are the brain’s beat cops,” says one scientist.
Dementia Care Cost Is Projected to Double by 2040 (Pam Belluck, NY Times, 4-3-13) Long-term care costs are particularly high because of the nature of dementia: You become unable to care for yourself and then your family members become unable to care for you. A Rand study in 2010 found that each case of dementia costs $41,000 to $56,000 a year. Total costs for dementia care nationally will double by 2040.
Alzheimer's tests using pen and paper still the best (Shari Roan, Los Angeles Times, Booster Shots blog 9-6-11)
Evidence Lacking To Support Alzheimer's Prevention (read or listen to Rose Raymond, NPR 4-28-10)
Many With Advanced Dementia Receiving Drugs of Uncertain Benefit (Pauline Anderson, Medscape, 4-7-17) The use of medications that have questionable benefits for patients in the terminal stages of dementia is widespread, and continues even in the final days before death, a new Canadian study has found. Medications of questionable benefit — those with limited benefit, or associated with unnecessary risks, or both — are never appropriate at the end of life, the authors write. "At the point where the person meets criteria for hospice care, the medical team should shift to a palliative approach by asking what's going to make this person most comfortable, what makes the most sense now."

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The Johns Hopkins Guide to Understanding Dementia (free, after you sign up)
Mental Stimulation Postpones, Then Speeds Dementia (read or listen to Allison Aubrey, NPR, 9-4-10)
Remembered: The Alzheimer's Photography Project (for people with Alzheimer's the past becomes part of the present -- it inserts itself and becomes part of their lives -- Gregg Segal, for AARP)
Path Is Found for the Spread of Alzheimer’s (Gina Kolata, NY Times, 2-1-12). Two studies in mice show Alzheimer's disease spreading from brain cell to brain cell through a distorted protein called tau. "The question of which hypothesis was correct — tau spreading cell to cell, or a bad neighborhood in the brain and cells with different vulnerabilities to it — remained unanswerable."
Tracing the Path from DNA to Dementia (Irene Wielawski, NY Times)
Aging and Alzheimer's Disease: Lessons From the Nun Study (David A. Snowden, The Gerontologist, 1997) Sister Mary, the gold standard for the Nun Study, was a remarkable woman who had high cognitive test scores before her death at 101 years of age. More remarkably, she maintained this high status despite having abundant neurofibrillary tangles and senile plaques.
Dementia Myths in Fiction (Dan Koboldt) Fact-finding for fiction writers, of possible use to families dealing with dementia.


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SUPPORT GROUPS FOR DEMENTIA PATIENTS AND CAREGIVERS


The Caregivers: A Support Group's Stories of Slow Loss, Courage, and Love From Caregiving in the Age of Long Decline (Nell Lake, Guernica, 1-15-14). Ours is an age of long decline and slow loss. Her mother’s final death, then, came both hard and as a relief.
Alzheimer's: Helping children understand the disease (Mayo Clinic) It can be a confusing time for young children when a loved one develops dementia. Ease your kids' fears and answer their questions about Alzheimer's disease.
Alzheimer's: Smoothing the transition on moving day (Mayo Clinic staff) Moving a loved one who has Alzheimer's into a new home or facility is a daunting task. Here's help planning ahead.
Alz Connected (connect on message boards with other people with the disease, caregivers, friends, family members, or people who have lost someone to Alzheimer's -- share experiences, advice with those who have Alzheimer’s or care for someone who does
Alzheimer's support groups (AARP)
Alzheimer’s Association online communities (share experiences, advice with those who have Alzheimer’s or care for someone who does)
Alzheimer List (an online discussion group)
Dementia Friends. See Changing the Way We Look at Dementia (Judith Graham, KHN, 2-8-18) In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn. One by one, they talked about what it was like to live with dementia in deeply personal terms. Before the presentation, audience members were asked to write down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they’d learned.
Well Spouse Association (support groups for spousal caregivers)
Support groups: Make connections, get help (Stress management, Mayo Clinic)

Memory cafés What is a memory café? An Alzheimer’s, dementia or memory café is a monthly gathering of individuals with memory loss along with their caregivers, and/or friends and family in a safe, supportive, and engaging environment. The cafe gives everyone a welcome break from the disease.
Memory cafés Midwest, U.S. (AlzLive listings)
Memory cafés Northeast, U.S. (AlzLive listings)
Memory cafés West U.S. AlzLive listings)
Memory cafés South, U.S. (AlzLive listings)
Memory People (an Alzheimer's and dementia support group on Facebook -- patients, caregivers, advocates and family members)

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Alzheimer's and dementia organizations and publications


Advancing Person-Assisted Living (CCAL, originally Consumer Consortium on Assisted Living) "Nothing about me without me"
Alliance of Women Alzheimer's Researchers (AWARE)
AlzLive (For Those Who Care).
Alzheimer’s Association (24/7 helpline: 1.800.272.3900). NOTE: Leading Alzheimer's group splinters over claims of misplaced priorities and lavish spending (Judith Graham, STAT, 3-2-16) The Alzheimer’s Association, one of the country’s most powerful disease advocacy groups, is rupturing amid an escalating dispute over its priorities: raising money for a future cure versus supporting patients and families struggling with the disease right now. The defectors accuse administrators of spending lavishly on salaries and travel, retaliating against breakaway chapters, and focusing too much on raising money for research and lobbying at the expense of local programs, such as exercise classes and outings for Alzheimer’s patients. “Their message revolves to a large extent around fear: ‘This is such a terrible disease, and it has to be eliminated,’” said Christian Wells, president of the former chapter in Austin, Texas, which broke from the national association in January. “We prefer a message of hope: ‘There’s life with and beyond Alzheimer’s.’” But as HealthNewsReview's review of that story points out,, "STAT didn’t address one particular issue that may have contributed to the intra-organizational friction – the national association’s relationship with large pharmaceutical companies. the Alzheimer’s Association’s focus on awareness — some would call it fear-based messaging — is consistent with what psychiatrist Susan Molchan says she sees from disease advocacy organizations that have financial ties to drug companies – and the Alzheimer’s Association currently lists six pharmaceutical companies among its national corporate sponsors. “It’s not that the funds [the Alzheimer’s Association] raise go to big pharma’s studies,” Molchan said in an email interview. “They ‘sell the sickness,’ using fear, and they also create false hope for ‘cure.’”
Alzheimer's & Dementia Weekly
Alzheimer’s & Dementia Disparities Engagement Network (ADDEN) A Network of Diverse Advocates, Researchers, Caregivers, and Individuals Living with Dementia Committed to Addressing Brain Health Disparities through Collaboration
Alzheimer's Disease Education and Referral Center (National Institution on Aging -- 1-800-438-4380)
Alzheimer’s and Dementia Caregiver Center (Alzheimer's Association)
Alzheimer's Helplines in the United States (AlzLive.com)
The Association for Frontotemporal Degeneration (AFTD)
Black Dementia Minds See Teepa Snow talking to people about living with a brain change you can't fix, and living in a community that doesn't like to talk about all that stuff: What is different about being black and having dementia, including early onset dementia.
Dementia Action Alliance (collaborative focused on improving dementia care in the United States--on making the U.S. a better place for people to live fully with dementia)
Dementia Care Academy (Pines Education Institute) Advancing dementia Care worldwide. Read The Power of Snow by Ann Silversides (AlzLive), about Teepa Snow, "the horse whisperer of dementia, [who] has created a powerhouse of a training infrastructure – workshops, DVDs, streaming video – that takes caregivers where they actually need to go." Hear segments of Teepa's talks on Teepa's own YouTube channel (free). Or Order DVDs.
Eldercare Locator (1-800-677-1116)
Sixty and Me's  guide to national help/resources on aging issues  Scroll down to state names and click on a state name to find links to specific resources for aging for that state. Looks quite useful.
Global Alzheimer’s And Dementia Alliance (GADAA), a grouping of global organizations committed to raising awareness about dementia, to increasing the understanding of dementia as a disease, and to reducing the stigma surrounding it
Global Brain Health Institute (GBHI). UC San Francisco (UCSF) and Trinity College Dublin partnered to create GBHI, to train a new generation of health leaders to break down disciplinary boundaries, translate new science into innovative interventions and practical help for vulnerable people and to mitigate the impact of dementia globally. See YouTube video.
Memory cafés What is a memory café? An Alzheimer’s, dementia or memory café is a monthly gathering of individuals with memory loss along with their caregivers, and/or friends and family in a safe, supportive, and engaging environment. The cafe gives everyone a welcome break from the disease. (See various cafes above, under Support Groups.

National Council of Dementia Minds Insights of persons living well with neurocognitive disorders, led by people living with dementia.
Stanford Center for Neuroscience in Women’s Health
US Against Alzheimer's (focused on accelerating a cure and building a more inclusive Alzheimer's movement -- excellent links to current research and articles). Includes Latinos Against Alzheimer's (because Latinos are 1.5 times more likely than non-Latino whites to develop Alzheimer's disease, in part, owing to increased risk of high blood pressure, heart disease, diabetes, and stroke—all additional risk factors for Alzheimer's and other dementias).
Well Spouse Association (support groups for spousal caregivers)

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Finances, legal concerns, and dementia care


Dementia’s Staggering Financial Cost Is Revealed In New Report: It’s ‘Bankrupting Families’ (Melissa Rudy, Fox News, 10-23-23) A great deal of emphasis is placed on the emotional and mental impact of dementia — but a new study from the University of Michigan highlights the financial burden it puts on families as well. Among people who were diagnosed with dementia, out-of-pocket health care costs more than doubled within the first eight years, researchers found. Dementia patients also experienced more than a 60% reduction in their net worth, according to the study findings, which were published in JAMA Internal Medicine. (Rudy, 10/23)
Medicare’s finances and the saga of the Alzheimer’s drug Aduhelm (Alicia H. Munnell, MarketWatch, 2-24-22) Aduhelm is a drug developed by Biogen BIIB, +2.10% to treat early-stage Alzheimer’s disease with an original ask price of $56,000 per patient per year. Its efficacy is unproven; patients face serious risks; and the drug’s FDA approval was extremely controversial, so Medicare officials faced a real dilemma. Medicare officials issued a draft decision in January to limit coverage to those in clinical trials. The basis for their decision was concerns that the benefits of the drug did not outweigh the safety risks. Price played no role.
As Covid Hits Nursing Homes’ Finances, Town Residents Fight to Save Alzheimer’s Facility (Judith Graham, KHN, 1-4-22) Moore-Few, which does not include a locked area for patients with dementia, experienced a covid outbreak after a staffer came to work with symptoms in October 2020. In the following weeks, 47 residents contracted the virus, and 10 died. A subsequent investigation resulted in an “immediate jeopardy” citation from the Centers for Medicare & Medicaid Services, a signal of serious problems that pose a risk to residents and mandates quick action, and a fine of $144,693. Investigators found that the nursing home had not adequately screened staffers for covid or prevented those with symptoms from working. Since then, about half of Moore-Few’s beds have remained empty. What to do?
We’re Getting Old, but We’re Not Doing Anything About It (Susan Jacoby, NY Times, 12-23-19) Like climate change, the aging of America demands a serious rethinking of the way we live. When dementia strikes, all bets are off because even if there is a child who desperately wants to keep his or her sick parents at home, it becomes increasingly difficult, if not impossible, to do so without home health care aides — which, again, Medicare usually generally does not pay for. The problem is not just the shortcomings of Medicare, or the inadequate savings of many Americans, or the absence of effective treatment for Alzheimer’s. It is all of those things.
Facing financial reality when early dementia is diagnosed (Martha M. Hamilton, Washington Post, 10-28-16) "According to unpublished Medicare data reviewed by the Alzheimer’s Association, 1 in 3 people 65 or older who die in any given year have been diagnosed with Alzheimer’s or another type of dementia, including those related to strokes or diseases such as Parkinson’s or caused by brain injuries or conditions such as alcoholism that damage brain or nerve cells. Even if you dodge that bullet, you can benefit from the recommended actions. They include having a health-care power of attorney or living will naming someone you trust to make health-care decisions if you are incapable, designating someone to take care of your finances and having a regular will to distribute your assets when you die."
Alzheimer's disease: Anticipating end-of-life needs (Mayo Clinic) As an Alzheimer's caregiver, you might be your loved one's most powerful voice. Make decisions that ensure dignity and comfort for your loved one.
Alzheimer's: Consider options for long-term care (Mayo Clinic) Eventually, most people who have Alzheimer's need outside care. Consider the options, from respite care and adult day services to assisted living and nursing home care.

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Legal and Financial Planning for People with Alzheimer's Disease Fact Sheet (National Institute on Aging) Invaluable information about organizations, brochures, and literature available to caregivers needing help with legal and financial matters.
Financial and legal affairs (Alzheimer's Society, UK)
Money Matters: Helping the Person with Dementia Settle Financial Issues Alzheimer's Association 20-page online booklet on "Making Financial Plans After a Diagnosis of Dementia" Sometimes the help you get isn't strictly financial but it helps your finances--for example, services funded in some states, such as adult day care, respite care, meal programs, caregiver support, and other in-home services. Indicates how to identify resources from Medicare, Medicaid, veterans' benefits, SSI and SSDI benefits, and public programs, and reminds you to learn about tax benefits from IRS.
Planning Ahead for Long-Term Care Expenses (Alzheimer's Association)
Planning for Care Costs (Alzheimer's and Dementia Caregiver Center, Alzheimer's Association). Common care costs, financial documents you'll need, financial needs and goals, etc.)

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Managing someone else’s money (Naomi Karp, Consumer Financial Protection Bureau, 10-29-13) Download the Consumer Financial Protection Bureau’s free, four-part guide.
--- Help for Powers of Attorney (PDF)
--- Help for Court-Appointed Guardians (PDF)
--- Help for Trustees (PDF)
--- Help for Representative Payees and VA Fiduciaries (PDF)
Financial Planning for Dementia (Robert Powell, USA Today, 10-11-14) "Medical research confirms one of the first things people have trouble with in the very early stages of dementia is managing personal finances. This means people can make very expensive financial mistakes, often before anyone notices there is a problem."
Financial Planning When Dealing with Dementia (Maggie Overfelt, CNBC, Fiscal Times, 10-7-13) '"Fifty percent of people who come to us don't have their wills done," said Holly Kylen, a retirement coach and an independent financial advisor with ING Financial Partners. Along with a will, advisors urge investors to review all estate planning documents (like a living trust) and name a durable power of attorney, the person who will make financial decisions when the person with Alzheimer's no longer can handle making those decisions.'
Payment Options & Financial Assistance for Alzheimer's / Dementia Care (Paying for Senior Care)\
Alzheimer's getting costlier, report finds (Maggie Fox, NBC News, 3-20-18) Daughters, other relatives carry most of the responsibility. "While it may sound counterintuitive, diagnosing someone before they progress from mild cognitive impairment (MCI) to Alzheimer’s can end up costing less....And it may not be Alzheimer’s. “When further testing shows reversible or treatable causes (for example, depression, obstructive sleep apnea or vitamin B12 deficiency) rather than Alzheimer’s disease, early diagnosis can lead to treatment and improvement of cognition and quality of life,” the report read."
In Alzheimer’s Cases, Financial Ruin and Abuse Are Always Lurking (Paul Sullivan, NY Times, 1-30-15)
Alzheimer’s and Dementia: Financial and Legal Planning for Patients and Families (Fiscal Tiger)
Explore how communities prepare for rise in people with Alzheimer’s (Liz Seegert, Covering Health, AHCJ, 6-5-17) "The CDC suggested that family caregivers might benefit from interventions such as education, respite care, and case management that can lessen the potential burden of caregiving. Yet many question how this will play out as Congress seeks to block grant Medicaid as part of a new health bill. That means less money for states at the same time more people are aging with this disease....the Trump administration is proposing drastic budget cuts to the Department of Health and Human Services, to Medicaid – which pays for 60 percent of nursing home care – and to home- and community-based services."
Alzheimer’s Diagnosis Can Mean Steep Costs for Family Caregivers (Elizabeth O'Brien, Money) Medicare does not cover so-called custodial care, which is what patients with dementia generally need the most—that is, help with eating, bathing, dressing and other basic daily activities. So those costs must be paid for entirely out of pocket unless the patient’s assets are depleted and she or he meets strict qualifications for Medicaid. ... Steele was aware of her mother’s assets and had financial (and medical) powers of attorney established while her mother could still express her wishes. All too commonly, caregivers don’t have the full picture on their loved one’s finances, and it’s tough to put the pieces together once a patient’s memory starts to slip."
Financial Planning for Alzheimer's Care (Alzheimer's Association) See also Legal and Financial Worksheet: Assets and Expenses.
As Rural America Faces an Onslaught of Alzheimer's Disease, States Look to Radical Ways to Help (Jessica Wapner, Newsweek, 6-1-17) "In rural areas, the rising proportion of older Americans means an accompanying rise in people with dementia. And these counties do not have the money, the professionals or the services to address the coming tidal wave of cognitive decline....But New York has a radical plan to save the caregivers by helping them take a break. Or have a shower. Or run errands. Or maybe just nap."

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Dementia blogs


About Alzheimer's (social worker Esther Heerema's blog). See for example What is dementia?
Age of Uncertainty (Roanoke, VA, blog with video stories about those who are aging, vulnerable, have Alzheimer's, etc)
Alzheimer’s & Dementia Weekly Topics vary from caregiver tips and relevant research to diagnosis and medications.
Alzheimer's Care at Home
Alzheimer's Disease: The Brand A medical writer (Bonny P McClain) and insight analyst focuses the lens on the evolution of Alzheimer's Disease as a diagnosis into a billion dollar healthcare juggernaut
Alzheimer's Front Row
Alzheimers.net (this blog entry on gift ideas for patients with dementia)
Alzheimer's Reading Room (posts from people who understand what it’s like to be a caregiver)
Alzheimer's Speaks Blog (Lori La Bey's personal experiences as a caregiver, by creator of Dementia Chats)
alz.org blog (helpful Alzheimer's Association blog)
Alzheimer's & Dementia Weekly (P. Berger's practical blog includes video)
AlzInfo blogs (informative and moving blogs by patients and caregivers, sponsored by Fisher Center for Alzheimer's Research Foundation). See, for example, Dementia's Song, a poem by Norm McNamara.
Caregiving 101 (Debbie Newsham's blog on trying to stay positive while caring for her father, who has Alzheimer's disease)
Caregiving with Purpose
Cleaning House Book (Joy Walker's blog as a Generation X caregiver for her father and as an advocate for Lewy Body Dementia caregivers)
Dementia Caregiving 101 (sisters Paula Farris and Lanette Stultz share what they learned caring for their mother)

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Early-onset Alzheimer's: When symptoms begin before age 65 (Mayo Clinic)
Early Onset Alzheimer's - Encourage, Inspire, and Inform (Linda S. Fisher). "Love is short. Grab it."
FTD/Dementia Support Blog (Howard Glick's blog, originally for early dementia support--see also Meet Howard Glick
A Good Enough Daughter (Sara Myers' blog about taking care of her mother, whose increasing dementia is one concern)
Living in the Shadow of Alzheimer's ...Going Through the Motions (Sheri's blog about about life with her husband, Bob, and his disease, “Al,” an unwanted visitor in their home.
Living with a Thief Named Lewy Body Dementia (Kathy Lowrey's moving and helpful blog about her late husband's illness)
Memories from My Life (Pat White's caregiver tips, news articles, science findings, and Diary of Life with My Mom (who has Alzheimer's)
Minding Our Elders (Carol Bradley Bursack's blog for caregivers)
My Demented Mom (Kathy Ritchie's blog for young adult caregivers)
Sharing my life with Lewy Body Dementia (Silverfox, 9-26-14). A continuation of the previous title; "Sharing my life with Parkinson's and Dementia" because the diagnosis has become more firm.
Watching the Lights Go Out (David Hilfiker's blog, A Memoir from Inside Alzheimer's). For context, read Now It Begins (1-30-13), posted the day he announced his Alzheimer's, visit his blog , and read his autobiography .
The Best Alzheimer’s Disease Blogs of 2019 (Jessica Timmons, HealthLine, 3-18-19)

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