Alzheimer's disease and other forms of dementia


Caring for patients 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.
Alzheimer's Association
A to Z of dementia (Alzheimer's Society, UK). Bite-size information on a variety of dementia-related topics, and where to find more detailed information)
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)
Alzheimer's Caregivers
Alzheimer's Facts and Figures (Alzheimer's Association)
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)
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 are headed 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.
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)
10 Early Signs and Symptoms of Alzheimer's (Alz.org)
Travel Safety (Alzheimer's Association)
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, 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...

ARTICLES
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.
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.
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
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."
Arts allow Alzheimer's patients to live in the moment (Mary Brophy Marcus,USA Today)
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."
Alzheimer's Project shown on HBO (this series, appearing on HBO in May 2009, can also be viewed free online at this link).
Best books on Alzheimers (Paula Farris, Dementia Caregiving 101)
Caregiver.com (with special attention to Alzheimer's, bipolar disorder, schizophrenia. long-term care, and medication management)
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.
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."
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
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.
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."
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."
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
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?)
How storytelling can help dementia patients (links to several articles, video)
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.
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?
In Alzheimer’s Cases, Financial Ruin and Abuse Are Always Lurking (Paul Sullivan, NY Times, 1-30-15)
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).
I Still Remember Love (Trish Vradenburg, Huff Post, 5-7-15)
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."
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

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.
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.
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 behavious." '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.
Sample medication log
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.
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.
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.)
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.
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).
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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Alzheimer's disease

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)
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.
FastStats data on Alzheimer's in the United States
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 was there in the beginning. "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."
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.
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.
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.
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.’
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.’
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.")
Alzheimer's Navigator (map out a plan to approach Alzheimer's)
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)
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.”
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.
Alzheimer's Disease In-Depth Report (NY Times excellent explanation of the basics, with illustrations)
What's the Difference Between Alzheimer's and Dementia? (Robert Stern, Alzheimer's Reading Room)
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.
More people with Alzheimer’s are becoming activists — which brings its own challenges (Fredrick Kunkle, Wash Post, 5-27-15)
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)
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
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."
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."
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
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.
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)
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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FTD or frontotemporal dementia


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.
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.
Frontotemporal Dementia (NINDS information page) Synonym(s): Pick's Disease, Primary Progressive Aphasia, Semantic Dementia, Dementia - Semantic
Pick's Disease (Help Guide)
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.”
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


'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).
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.
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..."
Lewy Body Dementia Association, Inc.
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


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)
Multi-Infarct Dementia (information page, National Institute of Neurological Disorders and Stroke, or NINDS)
Mixed dementia: emerging concepts and therapeutic implications. (Langa KM, Foster NL, Larson EB, JAMA, 12-15-04)
Mixed Dementia (Alzheimer's Organization)
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)
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.
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.
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."
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.
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)
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.
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)
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.
Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers by Daniel Kuhn
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
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.
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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PRODUCTS AND RESOURCES HELPFUL IN DEMENTIA CARE

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)
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).
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, mood, 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."
Not so fast! In a discussion of this topic 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.
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."
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.
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.
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Dementia news, research, and issues

Alzheimer's Association
Clinical trials (National Institute on Aging)
Clinical trials (NINDS, National Institute of Neurological Disorders and Stroke)
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.
Research Programs (NINDS, National Institute of Neurological Disorders and Stroke)
Alzheimer Research Forum (AlzForum)
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.
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.
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.
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."
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)
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.
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.
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)
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.
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.
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.
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.
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
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."
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)
• 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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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.
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)
Well Spouse Association (support groups for spousal caregivers)

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 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)
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)
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.
Stanford Center for Neuroscience in Women’s Health
US Against Alzheimer's (excellent links to current research and articles)
Well Spouse Association (support groups for spousal caregivers)
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Finances and dementia care


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: 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.
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.)
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)
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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)
A Good Enough Daughter (Sara Myers' blog about taking care of her mother, whose increasing dementia is one concern)
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 Speaks Blog (Lori La Bey's, creator of Dementia Chats)
alz.org blog (helpful Alzheimer's Association blog)
Alzheimer's Reading Room
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.
The Best Alzheimer's Blogs of the Year (Healthline)
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)
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 .
25 Best Alzheimer's and Dementia Blogs of 2012 (Tracy Rosecrans, HealthLine, 7-17-12)
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