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Aug 17, 2015 — Alzheimer’s is one of the most feared diseases because it can erode the very core of who we are: our memory, our personality, and our abilities. Dr. Norman Foster, Director of the Center for Alzheimer’s Care Imaging and Research relays a story that reflects the widely held stigma surrounding the disease. But then he examines the tale from a different perspective, explaining that there is more than one way to think about quality of life. He describes how the right support and care networks can help patients and their loved ones to live the best lives they can. The story is published in the New York Times Magazine.

Interview

Interviewer: Alzheimer's care has changed dramatically over the last 20 years and it's brought in a new perspective on living with the disease. We'll talk about that next on The Scope.

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Interviewer: I'm talking with Dr. Norman Foster, director of the center for Alzheimer's care, imaging, and research at the University of Utah. So I think it's hard to imagine a silver lining in a disease that causes such great change, where you're not only losing your memory, but you might have a personality change and eventually, you could become completely dependent on someone else for your care. What's your perspective?

Dr. Foster: Alzheimer's disease and related disorders are very serious diseases and they are feared more than any other disease by people who are aging because they attack such a fundamental aspect of us, our memories, who we are as people, and how we think of ourselves.

On the other hand, this disease often lets us both, as those who are affected by the disease as well as those who are family members and often equally affected by this disease, to rethink how we consider life and what's important and what quality of life is.

So much recent work has been devoted to try to examine quality of life in people who have Alzheimer's disease. We now recognize that we often mistake two essential components of quality of life, we've learned this from patients and their families, themselves.

One is, we've thought that anyone who has a disability has a poor quality of life. In fact many quality of life measures have been focused on what you're function is. Are you able to dress yourself? Are you able to perform your usual work activities and things like that? If you were no longer able to function in those same ways, then your quality of life measurement was poor.

But, in fact we've learned from the American with Disabilities Act that we can make it possible for people with disabilities to have a good quality of life if we make the opportunities available. If we are able to provide the resources to compensate for those disabilities, the can often have an excellent quality of life.

What is quality of life? They're two components. One is function. But, even more important is what we now recognize as existential quality of life. That is, how do we feel about life? What is important to us? And what turns out to be most important are our friendships, our family, the human relationships that we have. In fact, people who develop Alzheimer's disease have to make significant adjustments, as do their families. Expectations have to change. In fact, there can be a great joy in spending time with friends and family, even if we're not able to have the same kinds of responsibilities as a family member as we had in the past.

Interviewer: Right. So there's a story that got some press a few months ago in the New York Times that kind of illustrates prevailing attitudes and I was wondering if you can recap that story for us?

Dr. Foster: Well, this is a story that appeared in the New York Times magazine about a woman who had been very accomplished and was intellectual, was a writer and a researcher, who developed progressive memory problems. It's important to realize that she had had difficulty with depression throughout much of her life. And then when she developed Alzheimer's disease, she came to the conclusion that living with Alzheimer's disease was worse than death.

But, she actually found in living it that it wasn't so bad after all, and she dismissed the idea of assisted suicide. That's because she found joy in spending more time with her grandchild, gardening, and being with her family, and in fact she was actually able to reconnect with the family. As the story describes, she was able to spend time with her family in great joy. Unfortunately, as the magazine described, she then relapsed as she had done throughout her life into a period of melancholy and once again she began to talk about death as many people who have depression do.

Now from my point of view, this is important because depression is a common complication of Alzheimer's disease. About 30% of patients with Alzheimer's disease, even if they don't have a previous history of depression, develop depression which can be and should be identified and treated and can be treated effectively with medications.

Yet, in this case, the family thought that she had changed her mind and reverted to believing that the answer to her having Alzheimer's disease was assisted suicide. And so unfortunately, they did not seek medical attention for these problems. Her depression was never treated and suicide occurred.

Now, as quoted in the article, the daughter said, "I wasn't ready to let her go yet. We were having a great time." It was really, I think, a tragedy. But, unfortunately I thought as presented, it seemed to help reinforce the idea that is so common in our society about the nihilism, nothing can be done, this is terrible and there are no good outcomes, there are no ways that you can have good quality of life; very important.

Interviewer: What are some of the opportunities do you think were missed in caring for this professor?

Dr. Foster: A missed opportunity that we try to address here at the University of Utah is by bringing family members together. Now fortunately, in this case, family members by their own accord were supportive, but the patient described here became unnecessarily isolated. She eventually was only interacting with her daughter and other family members weren't brought in to serve as a support team or a care team that could engage her even beyond just that daughter and grandchild.

So many other relationships could've been nurtured for this patient, perhaps, preventing the depression, even. People who have memory problems tend to withdraw from activities partly by embarrassment and they don't know how to, aren't taught, how to communicate with friends and family about the memory problems and put others at ease, which is very important.

Interviewer: I know this is a big question, but you know obviously there have been big changes in Alzheimer's care over the last, say, 15 years or so that have lead to these different ways of viewing how we can help the patient and how we can help families. What are some of the major changes, you think, that are making the biggest impacts today?

Dr. Foster: It was felt that all our responsibility was to provide custodial care, just keep this person comfortable in some way, often in an institutional setting. Yet we found through research studies that in fact, people who are in the community, who are engaged, who are living at home with supportive family progress at a much slower rate than those who are institutionalized and managed without stimulation.

We've gone beyond the point where we didn't think that the environment made a difference to understanding that it makes a huge difference, and recognizing now that not only does it make a difference in the disease, but the quality of life, as we've been talking about.

Interviewer: Yes, interesting.

Dr. Foster: In addition, we have learned that all the brain is not affected in the same way, that there is selective injury to some parts of the brain with preservation of other parts of the brain. And that provides us the opportunity to compensate for areas of the brain that are damaged by utilizing strengths that the patient continues to have.

We've recognized the diversity of Alzheimer's disease and related disorders. There are many different causes of this syndrome, the condition that we commonly call dementia, depression, brain injuries of different types, Alzheimer's disease, but sometimes medications can mimic Alzheimer's disease. So we have to know what the specific cause is. Even when we know what the cause is, people are affected in different ways.

When we think about it now, this isn't such a surprise. We're all so different. We all have our individual strengths and weaknesses. Why not, when the brain is affected by such a disease, that we would all have our... the way that we individually respond to this. We're now focusing on precision care and personalized care knowing not only what disease the person has, but how that disease has affected that individual.

Interviewer: Do you have any other parting thoughts? Anything else you'd like to add?

Dr. Foster: Well, there's a large degree of stigma associated with memory problems that's unnecessary and counterproductive. We need to be able to talk about these issues openly. We need to be able to recognize how so many of us are affected by someone who we love who has memory problems, and we need to be aware of these problems, and educate ourselves about how support them in their time of need.

Announcer: Interesting, informative, and all in the name of better health. This is the Scope Health Sciences Radio.