Aging in Place and Person-Centered Care: It’s About Love: Part I

What is “aging in place?’  Take a look at the 2012 Senior Law Handbook published by the Colorado Bar Association for some further information about this.     Aging in place means aging, coping with all of life’s challenges and frailties that the aging process can bring, while living in a home and supported by family and friends and community.  This “new” approach is quite old-fashioned, hearkening back to the days when elders lived among the general population, before “retirement communities” and a medical model for institutionalizing the sick and frail elderly.  But wait, there’s a lot more eighty- and ninety-year-olds on the planet, and what about those baby boomers?  Well, I’m not proposing any earth shattering solutions in this post; I’m just suggesting looking at a few things a bit differently.

The Colorado Coalition for Elder Rights & Abuse Prevention published their April-June 2012 newsletter  with the headline “Transforming the Culture of Aging: Self Directed Living in All Settings.”   Person-centered care for people suffering dementia is especially important in trying to hold the person “in their identity” their essential personhood, and not just putting them away in a place where they will be safe.  Person-centered care was developed by the late Tom Kitwood, a British physician who had some revolutionary ideas about dementia and how to support people suffering from dementia.  Read more about him here.    Bottom line for Kitwood’s approach is that personhood, human dignity – is unique and sacred.  This is a far cry from what many in our youth-glorifying and death-denying American culture espouse.  We tend to focus on the losses that an elder suffers over the course of their inevitable physical decline, and pity their loss of autonomy – regardless of the fact that our individual “autonomy” is largely a fantasy anyway.  Here’s a link to information about person-centered care and gaining in place relevant to dementia sufferers.    So what are we missing here?

We can start with looking at elderhood as a stage of human development, ala psychologist Erik Erickson.  His wife Joan Erickson published an extended version of “The Life Cycle Completed,” (published by Norton  in 1998), including her own chapter entitled “The Ninth Stage.”  She notes at the beginning of the chapter:  “we must now see and understand the final life cycle stages through late eight- and ninety-year-old eyes.”  Erickson at 105.  She characterizes “old age” as a stage of life that is focused more on loss (“dystonic elements”) at the expense of self-growth and expansion (“syntonic qualities”).  Erickson asks the question of how it is possible to send elders out “into the world” they had previously inhabited and into a facility to have physical (medical) care and comforts met?  This is a good moral question that we must continue to ask ourselves.

This standard of care is the prevailing standard for care of protected persons, incapacitated individuals for whom it is necessary for another person to make decisions about daily care.  These types of decisions are known as “substituted judgment” and are recognized by the law in both probate proceedings (for a ward or protected person in guardianship proceedings) as well as by agents and proxy decision makers under state law.  The “best interests” standard applicable to substituted judgment is touted as an objective standard.

So then why resort to institutionalization?  Institutionalization is less prevalent than it used to be, but why is it necessary? For a number of reasons obviously – among which there may be no alternatives.  From my personal experience visiting residents in skilled nursing facilities over the last seven years (as a volunteer para-chaplain), I can tell you that the people I see are there because they want to continue to live and the facility is their only viable option to provide necessary life-sustaining care.  Are there steps we can be taking as a society to more fully re-integrate the old of the elder population (people over 80)?  Absolutely.  Erickson proposes more parks in which elders can meet.   The next question of course is whether there will be an opportunity for them to be heard, to be recognized as bearers of wisdom, still having something to contribute.  Will anyone ask them or want to hear their stories?   This is the biggest hurdle as far as I can tell.  Why?  We have no effective model of “elderhood” in our country!

Joan Erickson focuses on the “doing” part of elderhood – to rise above, exceed, outdo, go beyond , to continue to create so that elders can continue to “become” – which she identifies cleverly as gerotranscendance.  Erickson at 127.  Yes, the “dance” is intentional.  How beautiful!  I have difficulties with her exclusive focus on the “doing” and “making” part of becoming who we are – what about just the “being” part that is really the focus of person-centered care – what does that look like?

Well, I’ve nearly run out of space for this post, but I will mention that this will be continued.  I’ll be taking an in-depth look at a book I’m reading right now called “Elders on Love: Dialogues on the Consciousness, Cultivation and Expression of Love,” by Kenneth Lakrits and Thomas Knoblauch, Parabola Books 1999. I end with a quote from much-loved author Paulo Coelho:

The wise are wise only because they love.

More about love and wisdom, particularly the wisdom of elders – in a subsequent post.

©Barbara Cashman     www.DenverElderLaw.org

New Insight Into Causes of Alzheimer’s: It’s Still A Mixed Bag

A recent Mayo Clinic study asked “Does Overeating Cause Memory Loss in Older People?”  This is just too simple – isn’t it?!

This study looks to be like many of the studies ongoing with new technology enabling brain scans and better targeted cognitive tests – preliminary and giving only “suggestions” about causal relationships.  It is indeed a slippery slope to identify the boundary between age related “mild cognitive impairment” and Alzheimer’s disease.  A bigger question of course is what does “healthy aging” look like for the unprecedented numbers of people over age 80 that presently reside on the planet?  There are also people (medical doctors) who question the whole categorization of Alzheimer’s and other forms of dementia.  The National Institutes of Health fact sheet on Alzheimer’s disease offers the following:

“Scientists don’t yet fully understand what causes Alzheimer’s disease, but it has become increasingly clear that it develops because of a complex series of events that take place in the brain over a long period of time. It is likely that the causes include some mix of genetic, environmental, and lifestyle factors. Because people differ in their genetic make-up and lifestyle, the importance of any one of these factors in increasing or decreasing the risk of developing Alzheimer’s may differ from person to person.”

A recent study in the United Kingdom led to a discovery that in mice, certain proteins may block the progression of Alzheimer’s, particularly the toxic effect of the amyloid-beta protein. Read it here.

One of the tricky things about Alzheimer’s is that its progression is far from uniform (except in the case of younger onset, familial Alzheimer’s, which is most likely what the patient of Dr. Alzheimer suffered from) and people suffering from dementia often die from other causes.  So don’t think that you can usually go into a neurologist’s or geriatrician’s office and get a conclusive diagnosis of Alzheimer’s or staging of Alzheimer’s, an effective treatment or a cure for Alzheimer’s or many other types of dementia anytime soon.

Here’s a rather odd twist in the field of dementia and spirituality – which hasn’t been studied much.  The original research article published by Amy Owen and colleagues at Duke University is entitled “Religious Factors and Hippocampal Atrophy in Later Life,” which is available here.  It is one of just a handful of studies about spirituality in later life.  Several previous studies had indicated positive effects for elders, especially those suffering from dementia, who were part of a religious congregation or community.  A Scientific American article by Andrew Newberg discusses the study in his article “Religious Experiences Shrink Part of the Brain,” and you can read the article posted May 31, 2011, here. It contains plenty of very interesting comments about the methodology, causality and other factors in the study and the conclusions that may be drawn from it.

Dementia and Baby Boomers – you don’t have to be old to suffer the ravages:  “Dementia’s Youngest Victims Often Defy Stereotypes,” in  USA Today online from March 23, 2012. Read it here.