Best Books About Dementia and Caregiving

photo from the blog "The Generation Above Me"Are you looking for recommendations for books about Alzheimer's, dementia or dementia caregiving? Karen D. Austin of the popular blog "The Generation Above Me" has posted a list of her favorite dementia-related books, with links to her longer reviews of those books. I'm honored to have "Inside the Dementia Epidemic: A Daughter's Memoir" included. Thank you, Karen. What a lovely surprise this evening!

Karen writes:

"Even though my approach to aging is pretty broad, I have a persistent interest in cognition. Not only do I read about healthy, normal, age-related changes to the brain, I also read about change caused by disease.

"I am particularly interested in how dementia changes a person's cognition and how caregivers respond.

"I have read more than a dozen books (novels, reference books, memoirs, etc.), and I hope to read many more.

"Here are some quick reviews of some of these books with links to longer reviews. I plan on updating this page as I read more.

"1. Dosa, David (2010). Making the Rounds with Oscar. The author describes residents of a skilled nursing center who are moving into late-stage dementia and how their loved ones are responding to the challenges."

Read the rest of Karen's recommendations here.

Keeping Your Blood Sugar Down Lowers Alzheimer's Risk

The last 10 years of my mother's life she seemed to live on ice cream, cookies and other high-carb foods. What did that do to her brain? What has the low-fat, high-carb American diet of the past 20 years done to all of our brains?One of the things I care most strongly about as a dementia caregiver advocate is encouraging caregivers to do what they can to reduce their own risk of dementia. I know it often feels as if we are too busy to even go to the doctor for ourselves, but it's important to be aware of what can increase our own risk of developing Alzheimer's disease or another common dementia such as vascular dementia from small strokes.

Did you know that 50% of Americans are either diabetic or pre-diabetic (that is, with blood sugar on the high end of normal), putting them at much higher risk for cancer, heart attacks, stroke and dementia? 50%!! According to the research I did for my book, someone like me who is pre-diabetic is 70% more likely than someone with normal blood sugar and insulin levels to develop Alzheimer’s disease.

But most of us who are pre-diabetic never get a diagnosis. I am convinced that the rising epidemic of diabetes and pre-diabetes is directly related to the dementia epidemic. (In fact, Alzheimer's disease has been called "Type III Diabetes.") Of course there are probably many other causes, and there is no proven way to prevent Alzheimer's disease or other dementias. But that does not mean that we are powerless.

Here is what I do to lower my blood sugar and risk of developing Alzheimer's disease and vascular dementia: I try to eat Paleo (protein, healthy fats and lots of veggies--very few carbs). I am active in a 12-step program for those who eat certain foods compulsively (I am a sugar addict). And I exercise regularly, including weight training twice a week, which has been shown in research studies to slow cognitive decline in people with mild cognitive impairment. I've lost 50 pounds but have another 50 to go.

One sign of being pre-diabetic (also called having "insulin resistance") is having extra weight around your middle. If you have a belly at all, ask your doctor for a blood sugar test. And if she seems unconcerned that your numbers are high--because you don't yet have full-blown diabetes--don't let her complacency fool you into thinking you're not at risk. You are. Especially if you have belly fat in middle age. Keep your blood sugar (and accompanying insulin levels) down and you can help protect your brain from unnecessary damage. 

Here is a really good article about pre-diabetes: "Pre-Diabetes, Diabetes Rates Fuel National Health Crisis"

Staying Friends with a Person with Advanced Dementia

"How do you continue a friendship when your friend no longer remembers the story of your friendship?"
                     -- Susan H. McFadden, Ph.D., co-author, Aging Together:
                               Dementia, Friendship, and Flourishing Communities 

Book Review:  Aging Together

I have lived in an intentional community, a “cohousing” community, with my husband and children for 16 years. Our homes are built quite close together, we share outdoor space and “common houses” with meeting rooms, laundry facilities, dining areas, and play rooms, and many residents join village meals several times a week.

Such an intentional community serves as a kind of laboratory for aging not “in place” but “in community.” As cohousing spreads across the world, it has the potential to teach us a lot about one of the growing challenges—or opportunities—of aging:  how to maintain friendships with people we care about who develop Alzheimer’s disease or another dementia.

With one in 8 people over age 65 developing dementia, and nearly 50 percent over age 85, each of us is likely to have a friend with dementia, be a care partner for a person with dementia, or develop it ourselves. Aging “in community,” whether we live in an intentional community or a suburb, means that we will have to choose how we respond when our friends start to develop dementia. Will we grow closer, or slip away?

A recent book, Aging Together: Dementia, Friendship and Flourishing Communities by Susan H. and John T. McFadden (Johns Hopkins University Press, now out in paperback), is an excellent guide for anyone who cares about a friend with dementia.  It’s addressed “primarily to persons who have not given much thought to what will happen to their own friendships when forgetfulness increases.” The key question, the authors suggest, is “How do you continue a friendship when your friend no longer remembers the story of your friendship?”

The authors of "Aging Together: Dementia, Friendship and Flourishing Communities"Susan is a professor of psychology at the University of Wisconsin, Oshkosh, and writes extensively on aging, religion and spirituality. John, a minister for over 30 years, has served as a pastoral presence to people with advanced dementia. As Susan says in a video of a talk they gave together, “Regardless of whether you or a loved one have a diagnosis of dementia, we are all living with dementia. We need to tell a new story about dementia—a story that is not defined by fear and exclusion.”

In the video, John says “We can, together, weave a new story—a story about continuing friendships, rather than withdrawing from friendship. It’s a story about building dementia-friendly communities where our neighbors with dementia, and their care partners, are still very much a part of the give and take and flow and life together in community….[You can tell your friend,] ‘You’re going on a difficult journey, but you don’t have to do it alone. I, your friend, will travel it with you; I will not abandon you.’ ”

Read the rest of my review of their book and watch their video on ChangingAging.org.

Inspiring Interview with "Alive Inside" Director

Wow. I highly recommend taking eight minutes to watch the interview below with the director of the 2014 Sundance Film Festival's Audience Favorite, the documentary "Alive Inside," about the power of music to reach people with advanced dementia--specifically music from their childhoods. 

Michael Rossato-Bennett is so excited about the subject of his film that he would like to change the name of the film to "Make Grandma a Playlist!" He says that "music from your formative years hits you in a way that nothing else does." Rossato-Bennett was commissioned to design the website for the nonprofit Music and Memory, which campaigns to bring personalized music to nursing home residents, and he was so impressed with the program that he decided to document the work of Music and Memory in a film. 

Seventy-five percent of the people he filmed in nursing homes with advanced dementia--people who usually sit slumped down, unresponsive--"come alive" when they listen to their favorite music from their childhood and teen years on headphones. When the headphones are taken off, they are able to talk about their memories and have a real conversation.

As he says, the parts of the brain that process music are "basically spared" by Alzheimer's (and perhaps other dementias). Despite advanced dementia, all people have "life deep down inside us."

Music is not a cure for dementia, of course, but personalized music can be amazingly powerful.

Check out his interview, or my blog post last week, for more information about the film, which opened last week in select theaters across the country and will be available on iTunes and as a DVD in October.

"Alive Inside": New, Inspiring Movie About Dementia and Music

Photo courtesy of "Alive Inside"One stigma of Alzheimer’s disease and other dementias is the belief that people living with advanced dementia are completely “gone”--“shells of their former selves.” A new documentary shows that people with advanced dementia who may seem to have lost their ability to speak are still capable of being roused and engaged in conversation. It turns out that music is key—specifically, individualized music from the person’s childhood and young adulthood.

Now through September, the film “Alive Inside” is premiering in select theaters across the country, and is well worth seeing if you know someone with Alzheimer’s disease or another dementia—and even if you don’t. “Alive Inside” chronicles the work of social worker Dan Cohen, founder and Executive Director of the nonprofit Music and MemorySM. Cohen has campaigned for years to bring personalized music to nursing home residents in the form of an iPod or other digital device loaded with the person’s favorite music from childhood or early adulthood.Hundreds of nursing homes in the U.S. and Canada have implemented Music and Memory, and Cohen hopes the film will help bring personalized music to many more elders.

Directed by Michael Rossato-Bennett, “Alive Inside” won the 2014 Sundance Film Festival Audience Award and has been much anticipated because of a popular clip on YouTube. That clip shows a man named Henry with dementia who rarely speaks but “comes alive” when he listens to the jazz of Cab Calloway. “Alive Inside” includes conversations with the renowned neurologist and author Oliver Sacks, the musician Bobby McFerrin, and experts in elder and dementia care such as Dr. Bill Thomas.

Read the rest of my post on caregivers.com.