Thursday, December 30, 2010

Dementia and accountability

We have a cherished family member in her late eighties whose cognitive challenges have never been fully diagnosed but are very much in evidence. Because we love her and wish for her to know joy and comfort when in our company, the practices of patience and kindness have become second-nature within the family circle. When she asks the same question four times in a short period of time, we answer that question four times. When she becomes stuck on a topic that makes her anxious, we divert her attention to a happier topic. We have learned, in other words, how to live with the reality of her dementia in a manner that does not diminish the quality of the time we share with her. Most of the time, at least.

Because we recognize the reality of her dementia, she sometimes gets a “free pass” on remarks that would be regarded as inappropriate in other circumstances. She was never one to bite her tongue when she had an opinion to express, and the changes in her executive function have only heightened her tendency towards bluntness. Almost always her remarks can be brushed aside with a laugh. But a month ago I was sitting with her when we learned that President Obama had needed stitches in his lip after a mishap in a basketball game. She clapped her hands in delight and exclaimed “Oh goody!”

She has always been a staunch Republican, but in the past would never have celebrated the pain or suffering of another human being, no matter how vigorously she disagreed with that person. Or at least would not have admitted that she did. I felt I had no choice: I called her on it. I told her that her Christian faith did not permit her to rejoice in the pain of any person under any circumstances. She accepted that statement and expressed regret for her reaction, then promptly forgot the matter entirely.

Was I being unnecessarily harsh or cruel? Was I wasting my breath? Was I refusing to acknowledge the changes in her brain that directly affect how she processes information and responds to it? Perhaps. But if we excuse friends and family members with dementia from all moral accountability, are we not guilty of stripping them of their very personhood, essentially saying that nothing they say or do matters any longer? It is a tricky question. Clearly some forms of dementia impact not only social inhibition, but even the empathic response that lies behind such virtues as kindness and compassion. Dementia leads some persons to become angry or cruel, with no control over these behaviors. We must recognize this reality and make allowances for it.

But if we view our friends with dementia as no longer having moral agency and accountability, are we not reducing them from a “thou” to an “it?” If our friends are no longer worthy of being challenged or corrected when a moral line is clearly crossed, are we still being a friend to them at the deepest level?

I do not pretend to have definitive answers to such questions, but I do not regret the challenge I issued to our family member. My goal was not to change her behavior. It was to seek continuity in our relationship, one that—even within very real disagreements about political matters in particular—has been rooted in a common religious faith and moral vision.

Thursday, December 16, 2010

Will baby boomers be the last generation to experience AD?

At this point, with so many threads of research pointing to so many ideas about Alzheimer’s, everything is a target for treatments to prevent or slow the disease — enhancing the brain’s beta amyloid disposal system, interfering with nerve cells’ feedback loops, blocking tau, protecting the brain’s default network by focusing on its unique metabolic properties.

But researchers say the best hope for the immediate future is with experimental drugs, now being tested, that slow beta amyloid production. The hope is that if the flow of amyloid into the brain is slowed, levels can go down even if the amyloid drain is slightly clogged. The drugs might work even if the problem is with the drain, not the faucet.

The trick in Alzheimer’s, though, might be to start treatment before too much damage is done. (from a recent article in the N.Y. Times by Gina Kolata)

It is a lengthy and fascinating article, well worth reading. While many questions remain unanswered, clearly our understanding of the cause or causes of AD is advancing, and it is not unreasonable to think that we are drawing closer to the ability to delay, minimize or even prevent the symptoms it ultimately brings, whether “closer” is measured in mere years or in decades. A consensus appears to be rapidly building in the research community that a critical key to any such intervention will be “to start treatment before too much damage is done,” meaning detecting AD long before symptoms first appear. Oh, and good luck should you be so unfortunate as to develop a form of dementia that is drawing less attention and far fewer research dollars than AD.

Whenever this “breakthrough” occurs, it will likely come too late for the baby boomers. This may put the largest generational cohort in American history in the interesting position of being the last generation in which as many as half of us will experience AD as a part of our aging process. Smallpox is the only disease has been officially “conquered," with polio and guinea worm disease on the verge of being vanquished. Could AD one day be added to that list? I count myself a skeptic, but it would be a wonderful accomplishment.

One wonders how we boomers, often characterized fairly or unfairly as carrying a sense of entitlement with us as we have aged, would respond if we learned that it was possible to delay or prevent the onset of AD, but only for those younger than ourselves. And one wonders how the manner in which younger folks relate to our generation, particularly those among us living with progressive memory loss, would change should they have grounds to believe “but it can’t happen to me!” Would we become objects of curiosity? Of sympathy? Of scorn?

My hope is that younger generations, freed from the fear of developing AD themselves, would be more comfortable having us as their friends and neighbors, taking us on our own terms, being present to us, and willing to enter our world for a bit of time. If it is a world they will never need to inhabit themselves, it becomes a less threatening world to visit. Could I dare to hope that they would insist we receive the care that we need, knowing that the costs will ultimately be contained by our mortality? Could “conquering” AD be a good thing not only for those young enough to benefit directly, but also for those already living with it? The crystal ball is cloudy, but any time we remove a fear from the world, the world becomes a better place.

Saturday, December 11, 2010

Medicare Mandate for Cognitive Screening

An assessment of cognitive impairment will be a mandatory part of the annual wellness visit for Medicare beneficiaries beginning January, 2011, as part of passage of comprehensive health care reform legislation known as the Patient Protection and Affordable Care Act.
In the midst of the most significant demographic transformation in decades with the first wave of baby boomers beginning to turn 65 next year, assessment for cognitive impairment detection is essential as millions of Americans advance to an age when they are at greater risk for developing Alzheimer's and other dementias. (Source: Alzheimer's Association)

How did this one slip past the “death panel” crowd? Many persons over the age of 65 will doubtless be surprised when their general practitioner asks them to name as many animals as they can in a minute or to count backwards by nines. No doubt some will find it obtrusive or threatening. One hopes that when this becomes widely known it does not become yet one more excuse to put off the annual wellness visit with the physician.

Early detection of dementia is certainly a desirable thing. It can motivate lifestyle changes (exercise, nutrition, etc.), inspire participation in memory clinics or creative expression groups, and help individuals and those in their social support network plan for how they will address future changes. But this new provision also raises a host of questions:

How much instruction are front-line medical providers receiving in how to administer these cognitive assessments? What assessment tools will they use?

Beyond making a notation in the medical record, are these providers equipped to discuss options with their patients who show symptoms of memory loss or cognitive decline? Will they provide them with ongoing support and guidance? Or will they simply send them home with a booklet?

What is the threshold at which the front-line provider will refer the patient for more comprehensive evaluation? Who establishes this threshold? Will it be universal or individual (and therefore subjective)?

Are there enough practitioners equipped to do these more comprehensive evaluations to accept what is likely to be a huge increase in referrals?

Are there sufficient community-based resources to offer support, guidance and programs to those diagnosed, their families and their friends? How will these essential resources be funded?

This new, mandatory provision of Medicare is not on many people’s screens yet. It soon will be. It will no doubt quickly expose how limited and underfunded our network of resources for those experiencing progressive memory loss presently is. One dares to hope that it will inspire us to begin to address this critical need.

Tuesday, December 7, 2010

Reconfiguring Gatherings

In our book, we include a letter written to Randy Cohen, author of the ethics advice column for The New York Times. The letter describes a group of men who have played poker together for many years. Now one of the men has been “stricken” (the term used by the writer) with AD, making the game less enjoyable for the other participants. They wish to know the most ethical way to ask their long-time friend to absent himself from their gatherings.

We often share this letter in our presentations to caregivers and ask how they would respond to the writer. One outraged woman suggested that the response should begin with the words “Dear selfish bastard,” which drew hoots and cheers from other participants. Friends and care partners of those experiencing progressive memory loss know full well what it is like to be abandoned by long-time friends. We also share Cohen’s response to the writer and invite participants to critique it, which they do with gusto. But although Cohen’s answer is disappointing, he does give us a helpful phrase when he suggests that perhaps there is a way to “reconfigure your gatherings” in a manner that would permit the friend with AD to participate, at least on an occasional basis.

As we grow older, all of us will be forced to “reconfigure our gatherings” for a wide range of reasons. We have dear friends whose tennis group has been an important circle of friendship for decades. Most of their members are now in their sixties, and several have been forced to give up tennis because of illness or injuries. Yet they still call themselves “the Racketeers” and gather regularly for meals and other social events—tennis initially brought them together, but it is friendship that sustains them.

Progressive memory loss sometimes calls for creativity and imagination to reconfigure gatherings so that sustaining friendships can continue. One woman told me the story of her mother’s “sewing group.” Her mother, who is in her mid-eighties and has been diagnosed with AD, has participated in this group for more than fifty years. Somewhere along the way sewing became less important than socializing, so in recent decades the ladies have focused on playing cards (a game called “sheepshead” that appears to be unique to Wisconsin) and chatting. Over the years, several members have died or moved away, and two “younger ladies” (now in their mid-seventies) joined the group.

One day the mother announced to her daughter that she did not think she would participate any longer. Knowing how important the group was to her, the daughter gently prodded her for the source of the decision. Mother finally confessed that she was anxious about driving herself to the gatherings (something her daughter had been anxious about for well over a year). “Would you still like to participate if I drove you?” she asked, and her mother happily accepted the offer. For a full year, this arrangement worked well, and soon two other daughters were serving as chauffeurs, often remaining to chat with one another while their mothers played cards.

Then her mother announced once more that she did not think she wanted to continue with the group. More prodding revealed that her mother was aware that she was not playing cards as well as she used to and feared that she was ruining the game for others. It had become clear to the daughter that her mother was not the only member of the group contending with memory loss, so she pulled the other daughters together for some brainstorming. They proposed to their mothers that the group substitute dice for cards, a suggestion that was enthusiastically embraced. The group still gathers on a regular basis, the daughter told me, “and it is usually one of the ladies with Alzheimer’s who wins!”

Too often, circles of friendship that provide important social support are discontinued when someone concludes “this does not work anymore.” That observation should always lead to the question “What would work?” In this case, a dedicated daughter asked that question twice, and each time came up with an answer that not only allowed her mother’s group to continue, but also established an important new web of friendship among daughters serving as caregivers. We will all need to reconfigure various gatherings in the years to come; may we do so we this kind of loving creativity!