Confronting dementia: When ignorance isn’t bliss

If the findings from a recent Harris poll are any indication, many American adults worry their post-retirement years will be darkened by the shadow of Alzheimer’s disease and related dementias. Yet despite this fact, the majority have made few, if any, preparations.

The poll, conducted by Harris Interactive for the MetLife Foundation, contains some rather eye-opening observations:

– Of the 1,007 respondents, 31 percent said Alzheimer’s is the disease they fear most. Age-related dementia was second only to cancer, which was listed as the most feared disease by 41 percent of those who took part in the survey.

– Although nearly one-fourth of the survey participants were extremely or very concerned they would some day have to provide care for a loved one with Alzheimer’s, fewer than one in five have made any plans for the possibility of some day developing Alzheimer’s disease.

– Fewer than half said they’ve talked to their families about Alzheimer’s.

– 33 percent have considered the care options for Alzheimer’s disease and 44 percent have designated who their caregiver will be.

– Slightly more than one in five of the respondents said they had made financial arrangements for the possibility of Alzheimer’s.

More than five million Americans currently have Alzheimer’s disease. Once the baby boom generation reaches age 65 and beyond, their ranks are expected to swell substantially, accompanied by considerable personal and financial cost.

Given these facts, it’s both baffling and concerning that so many people seem unprepared – or perhaps they simply prefer not to think about it. To muddy the waters further, an ethical debate appears to be brewing over new tests that make it possible to diagnose Alzheimer’s in its early stages. Should people be told, or is it better not to burden them with the knowledge of a disease with no known cure or prevention? It puts doctors in a quandary, Lisa Suennen of the Psilos Group writes on The Health Care Blog:

If they tell their patients the bad news, it may have a profound negative effect on their psyche and lead to debilitating depression; if they don’t tell, they are withholding information that might enable a person to prepare their life more effectively to deal with the oncoming challenges.

In a recent guest post on Kevin, MD, Dr. George Lundberg is blunt about the value of the florbetapir-assisted PET scan of the brain, which can detect early Alzheimer’s disease with a certainty previously available only upon autopsy. Calling it “a diagnostic bridge to nowhere,” Lundberg asks:

Doctor, do you really want to know if your patient has a chronic, slowly progressive, fatal, debilitating disease for which you have no effective intervention?

Patient, do you really want to know if you have a chronic, slowly progressive, fatal, debilitating disease for which medicine has no effective intervention?

If you put it that way, the answer would probably be no. The more important question, though, isn’t whether we want to know; it’s whether we should know so we can begin planning for the inevitable decline.

“Diagnosis is an end in itself,” wrote one of the commenters to Dr. Lundberg’s guest post. “Patients who want to know their condition should have access to a test that can tell them what their medical condition is and/or is likely to become, even if this test is self-pay. Patients can anticipate what is to come, and for [A]lzheimer’s patients in particular it enables choices before the power of choice is gone for the individual.”

A commenter on The Health Care Blog also brought up the importance of helping families prepare:

If you know your older relative will probably end up with Alzheimer’s, it completely changes the family’s ability to cope with the challenge. They suddenly have the option of realistically planning for it. This is in contrast to the panic that sets in when you’re in a situation where you are watching the elderly person deteriorate and trying to figure out what’s going on – or worse, fighting through the elderly person’s total denial of their situation.

If you expect your mother will have Alzheimer’s, maybe you adjust your life so you don’tmove away for that new job. Maybe you go so far as to have one kid fewer. Maybe you organize a neighborhood babysitting share so that when you do have one more kid, if mom is starting to deteriorate, three days a week you can take care of mom. Maybe you put money in some kind of special caregiving account – and if you’re really savvy and well connected, you start lobbying to make such an account tax-free! Maybe you get co-signing rights to checks or rights to oversight of all of dad’s financial accounts while he’s still compos mentis, so that you can monitor them and take them over when dad gets to the point where he can’t make good decisions and people start trying to rip him off. Maybe mom makes you or a friend she trusts eligible to share her medical records, so that her caregivers can plan with you and freely share her information with you.

I’m not sure there are any easy or obvious answers here, other than that none of us can assume we won’t ever be faced with dementia in a loved one or in ourselves.

For starters, though, if you live anywhere near west central Minnesota, consider attending a free community education program in Willmar next week, sponsored by the West Central Dementia Awareness Network. It’s at Bethel Lutheran Church at 5 p.m. Tuesday, April 12. Guest speakers Marcia Berry, education manager of the Alzheimer’s Association of Minnesota and North Dakota, and Willmar attorney Brad Schmidt of the Johnson, Moody, Schmidt and Kleinhuizen law firm will talk about early identification of Alzheimer’s and legal planning. The event is free and will include exhibits, educational materials and a barbecue supper.

When you talk to people who have dealt with Alzheimer’s disease in a parent, spouse or sibling, a common theme tends to emerge: Families can take refuge in denial and end up delaying appropriate care and services for too long. Then there’s a crisis and decisions must be made when people’s backs are against the wall. Ignorance isn’t necessarily bliss; too often it only seems that way until reality intrudes to shatter the illusion.

Photo by Rob Farrow, from the Geograph Project collection.

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