The Problem with Alzheimer's Disease

Originally posted to Her Final Year on August 24, 2011 by John
Reprinted with permission, with a few small adjustments.

Alzheimer's Disease isn't fickle. It doesn't target just one demographic: it doesn't care how well you're doing financially, or if you're popular, or what color you paint your toe nails or if you're hairy or hairless. Anyone may find themselves either a victim or a potential care-giver.1

Ronald Reagan had Alzheimer's Disease; now WaPo is reporting that Pat Summitt has been diagnosed with early-onset dementia:2

Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who has won more games than any other college coach ever, men’s or women’s, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. A woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. "She lost her keys three times a day instead of once," her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.

There are tests which help doctors determine the type - and stage - of dementia. For some folks, these tests make sense. For others, they may be misleading. Such was the case with Summitt, according to her son. Per the WaPo piece:

Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton.

This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cellphone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.

When I was the primary care-giver for my mother-in-law, I also noted that the tests (sometimes as simple as asking someone if they remembered a person's name only a few minutes after being introduced) were not fool-proof:3

Part and parcel with spending more time with Georgia by her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist's name -- "Dr. Penny" -- was one example. I placed a penny in Georgia's hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor's name. She looked at the penny in her hand and smiled. "Dr. Penny," she replied with a grin. When he entered, she didn't need to look at her hand. In fact, I think she'd pocketed the penny by that point. But she did remember his name.

This was one of those doubled-edged sword things. The blade cuts both ways -- my helpful "hint" to Georgia to help her alleviate the stress of not remembering the doctor's name and help her feel more at ease likely factored into the doctor's evaluation, as from his perspective Georgia was able to recall his name w/o assistance.

I didn't really think of that at the time.

Continuation of this thought... Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Caregivers, in spite of the best of intentions, may be enabling a form of denial in some ways -- that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor's name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as caregiver/protector/assistant etc.

Sometimes, in our efforts to be helpful, we may thwart some of the simpler yet rudimentary tests that doctors use to establish the parameters necessary for a diagnosis.

It's one of the additionally frustrating things about finding oneself in a care-giving role: can your efforts to help the loved one also impact - possibly negatively - the ability of doctors to develop an accurate medical picture in order to make a proper diagnosis?

A crucial factor that goes hand-in-hand with this is the issue of communication. Not just between doctors and care-givers, but also doctors and patients, patients and care-givers, and all of the preceding in various combinations as they need to communicate with family, friends, legal assistance and social workers or state & federal employees.

So, what's 'the problem'?

Borrowing liberally from the section of our website called The Problem, here's the basic issue:

You may be asking yourself, "So what? Why should this interest me?" Regardless of whether you are currently providing care for a loved one stricken with Alzheimer's Disease or not, age-related dementia and care-giving are huge issues – ones that will become even greater as the baby boomer generation ages into and through the retirement age.

How big a problem? From pages 16 & 17 of the 2011 Alzheimer's Disease Facts and Figures report:

The number of Americans surviving into their 80s and 90s and beyond is expected to grow dramatically due to advances in medicine and medical technology, as well as social and environmental conditions.

Additionally, a very large segment of the American population — the baby boom generation — is reaching retirement age. In fact, the first baby boomers are reaching age 65 this year.

By 2030, the segment of the U.S. population aged 65 years and older is expected to double, and the estimated 71 million older Americans will make up approximately 20 percent of the total population.

As the number of older Americans grows rapidly, so too will the numbers of new and existing cases of Alzheimer’s disease and other dementias.

  • In 2000, there were an estimated 411,000 new (incident) cases of Alzheimer’s disease. For 2010, that number was estimated to be 454,000 (a 10 percent increase); by 2030, it is projected to be 615,000 (50 percent increase from 2000); and by 2050, 959,000 (130 percent increase from 2000).
  • By 2030, the number of people aged 65 and older with Alzheimer’s disease is estimated to reach 7.7 million — a 50 percent increase from the 5.2 million aged 65 and older currently affected.
  • By 2050, the number of people aged 65 and older with Alzheimer’s disease may triple, from 5.2 million to a projected 11 to 16 million, barring the development of medical breakthroughs to prevent or more effectively treat the disease.

Perhaps the most ominous entry in the report is the one a few paragraphs further down the page:

  • When the first wave of baby boomers reaches age 85 years (2031), an estimated 3.5 million people aged 85 and older will have Alzheimer’s.

That's a pretty hefty chunk of the population.

That "hefty chunk" of the population means an increased burden on our healthcare and support systems. Given the recent trends toward carving out more unnecessary and unwise chunks from Social Security, Medicare and Medicaid, that translates out to one heck of a growing future problem. And if the current course is maintained with regard to proposed changes to Medicaid, it's going to be a very costly problem to boot.

Her Final Year: A Care-Giving Memoir

James Downey and I co-authored a book about our experiences, and folks on Daily Kos and ePluribus Media have been very supportive of our effort. We wrote it because we felt others could benefit from our experience, particularly as we related our experiences through the lens of "as it happens" using journal entries, blog posts and email. As we prepared for publication and began to develop both the website and Facebook page, and then began to create a marketing plan, we learned more about just how large the problem will likely become.

It's pretty sobering, and downright scary.


1 Taken from our latest Facebook update.

2 From the Washington Post article by Sally Jenkins, published 23 August 2011.

3 From the entry Penny for your thoughts, starting on page 14 of the printed version of Her Final Year.

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