Patience and Patients: Understanding the Spectrum of Alzheimer's Disease — Longwood Seminar



Alzheimer’s in the Family: A Novel Approach

We Are Not Ourselves author Matthew Thomas discusses his fictional and real-life experience with the disease.

By George Vernadakis

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Though many think of Alzheimer's as an old person's illness, nearly five percent with the condition are under 65.
Though many think of Alzheimer's as an old person's illness, nearly five percent with the condition are under 65.
Corbis

Ed had lost faith in the physical properties of things. On the way up the stairs that night, he stopped on every step.

Ed Leary is a college professor, struggling to negotiate the steps to his own bedroom, in Matthew Thomas’s critically acclaimed novel We Are Not Ourselves. A multigenerational portrait of an Irish-American family, Thomas’s book is about many things — immigration, feminism, capitalism, domesticity, and alcoholism. But ultimately, it’s about Alzheimer’s disease and, in particular, early-onset dementia.

Alzheimer’s is commonly thought of as an old person’s illness, but nearly five percent of the more than five million Americans who have Alzheimer’s are under the age of 65. Like Ed Leary, Thomas’s own father was diagnosed at an early age.

Thomas talks about his novel, how experience and research influenced his writing, and what advice he has for others facing the physical, psychological, and financial toll of coping with Alzheimer’s.

EH: In the novel, a doctor says Alzheimer’s is “a disease where you never win.” Do you agree, and what do you think about the likelihood that medical science will finally crack the Alzheimer’s code?

Thomas: I have a lot of faith in science’s ability to find a cure eventually. Some of the best minds in the world are working on this problem. There have been developments like the possible vaccine that goes after the beta-amyloid proteins and offers the potential for a temporary cessation of symptoms or the reversion of some deterioration. The thing that’s so frustrating is that, up until very recently, almost no progress had been made in some ways. But I think there will be an eruption of possibilities in the next few years.

The doctor in the novel goes on to say that the disease “doesn’t just take down the sufferer. It takes down the spouse, the children, the friends.” What is the collective experience like for a family dealing with Alzheimer’s?

It’s a devastation...watching someone disappear. There are so many conflicting feelings one has watching this happen. Fear. Anger for one’s impatience. Anger at the person for going away, even when it’s not his or her fault. The welter of feelings that precede diagnosis can lead to self-recrimination later when some kind of diagnosis has been achieved. All of the impatience with this person in retrospect is colored differently and provides an opportunity for enormous feelings of regret.

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What would you say to families that are coping with a loved one who has the disease?

Try to be patient with each other on both sides of the divide. Try to remember that this is an incredibly terrifying thing for the person suffering from the disease. Talk with the person who’s facing the diagnosis and the disease, to let that person feel less isolated.

Involve other people as quickly as possible. Allow it to be a family affair. It’s so isolating in every way. Other people can be so helpful emotionally in reducing the burden of isolation.

Attempt to embrace life in a more active way. Have experiences together. Wring as much out of life as possible — the way we all ought to do, regardless — the momentousness of every day.

RELATED: Having an Alzheimer’s Action Plan

You did a great deal of research for the novel, into everything from insurance costs to patients’ rates of deterioration. Did your research turn up any surprises?

I was surprised to see how much of a correlation there is between head trauma and Alzheimer’s. Not a causation, but a correlation. And between type 2 diabetes and Alzheimer’s. These aren’t necessarily things that are going to lead to Alzheimer’s, but there’s an interesting amount of correlation that has been identified.

Other things that surprised me were how many people, despite some of the education about early-onset Alzheimer’s, still think it’s a disease of the elderly.

Lastly, just how much economic devastation there is to families going through this. The amount of money that is required of a family before intervention happens. The loss of income. The extraordinary rates at nursing homes.

More than research went into writing the novel — your father was diagnosed with early-onset Alzheimer’s when you started college, and he died when he was 63. What were your observations about the disease’s progression?

As Hemingway said [in The Sun Also Rises]: How did you go broke? Gradually and then suddenly.

It’s gradual; but if you observe the way the deterioration happens, it happens in plateaus. Each of those plateaus that is reached feels like a huge drop down to sea level. So you get used to a certain way and then there’s a kind of shift, and the person loses a lot of functionality very quickly. There’s a suddenness about it every so often.

How does the impact of early-onset Alzheimer’s differ from that of the disease diagnosed in someone of a more advanced age? 

There isn’t the same fully lived life to the same degree. There hasn’t been that compilation of memories and experiences to the same degree. It’s devastating in a different way. Not to say that when it happens to someone older there isn’t devastation. The emotional life for those two families is the same.

In Time magazine, you wrote about the dilemma of whether or not to be tested for the gene associated with early-onset Alzheimer’s disease — and your decision not to pursue genetic testing. What was your reasoning, and what would you say to someone facing the same situation?

It’s a rational and an emotional decision. Those are two streams that run alongside each other, but they’re not part of the same river ultimately. They relate to each other, but they have to be accounted for separately.

You can set up as much as possible. A financial safety net to the degree that you have the resources to do so. You can get the wills written up. You can get the power of attorney secured. You can do all these things that you would need to do were you to find out tomorrow that you were going to get Alzheimer’s.

The question is: What are you going to do with the information?

I have these 3 ½ year old twins that I love so much. If I knew that I were getting [Alzheimer’s] tomorrow, I think I would probably sink into a really terrible sadness that I can forestall somewhat by a kind of, let’s say, nuanced denial. I can actively attempt to live as if I knew I were getting it, with the feeling in the back of my mind that I held out the hope that I wasn’t. And I think that not knowing amounts to a certain kind of hope.

Thankfully, I had a compatriot in thinking like this. My wife is a very clear-headed person who saw the wisdom in thinking like this immediately as well.

It’s such a personal choice. It has to be a personal choice.

The New Yorker magazine called your novel “the greatest Alzheimer’s novel yet.” Clearly, the book isn’t just about Alzheimer’s, but how do you feel about it serving as a guide to help other families?

I tried to write this book as a work of art, first and foremost. To capture the lives of these characters as thoroughly and as accurately as I could, according to my imagination of their lives. But the thought that I might be able to provide succor for someone or to cast light on these experiences and make the experience less lonely for someone...it’s hard for me to imagine anything feeling like more of a reward than that.

Last Updated:9/24/2014

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Date: 06.12.2018, 14:58 / Views: 34253