Dementia and the Fear of Aging and Death

denver elder law

Denver Botanic Gardens - Grape Arbor in September

This is a popular theme of mine, this topic of the burgeoning number of elders with dementia (Alzheimer’s or other types).  The issue of dementia and capacity is an evolving area of elder and estate law and the reach of dementia extends well beyond the individual’s loss of autonomy.  Sometimes I refer to Alzheimer’s as being “contagious” in this regard.  It can and usually does affect an entire family systems or social network.  More on the Alzheimer’s epidemic: coming to an affluent country near you….Australia , Israel, and the US .

The ramifications for our financial, legal, psychological and medical well-being are far-flung and highly dependent on an individual’s unique circumstances.  what most of us seems to be in agreement about in this aging and dementia context is that it is indeed a frightening possibility to consider.  But you could say this about many aspects of the uncertainty (general or particular) in our lives.  Getting stuck in the fear reaction to this disease or condition can keep us in a not-so-productive flight-or-fight reptilian brain mode of thinking.  We need our entire brains and all of our awareness and our hearts’ courage and wisdom to look at what this phenomenon is and what it means to us.  Where does the fear originate?  In our brains!  It is our ego-based sense of control feeling inadequate and looking to blame something “out there” so we can keep going.  Our hearts, on the other hand – are where the courage comes from.  The word courage comes from the old French word “corage” and from the Latin “cor” (the modern French word for heart is of course “coeur”).  I think of the popular Mark Twain quote here:

Courage is not the absence of fear.  It is acting in spite of it.

So the brain can make us fearful, but the heart can give us courage to overcome and move beyond where we would otherwise get stuck.

I recently read an article in a SciAm Mind about recent research on the distinction between age-related forgetfulness and Alzheimer’s disease .  Read “Researchers Discover Potential Clue Behind Age-Related Memory Decline” here .    I think here they probably intend the more general forms of dementia as a disease progression, which of course includes Alzheimer’s.  I am mindful of the medical establishment’s tendency of lumping together different types or forms of dementia under the category of “Alzheimer’s disease” and also know that very few of the people dying of dementia as a cause of or contributing factor of death (primary or secondary as noted on a death certificate) will have a piece of their brain examined under a microscope to confirm the existence of the particular form of dementia known as Alzheimer’s Disease.

What do we do with all these clues, potential causes, coping strategies, and the search for remedies and answers?  I think the important thing to keep in mind is that the brain is not some black box of processes that contains everything we are.  This is where much of the approach of mapping and cataloging the brain really begs the question.   Just because we have more clues from advances in neuroscience about how the architecture and chemistry of the brain tends to behave based on our current observations and understanding, this doesn’t mean we have answers to any of those questions that the ancient Greek philosophers and others have posed throughout human history about the nature of being and consciousness, reality, and life in general.  In fact, I would submit, the obsession with the discovery of new details of neuroscience they are leading us farther from the real and bigger questions, these are the  important ones that get obscured with all the details piling up.  All this brain-obsessed cataloging completely overlooks the role of the heart, not as a mechanistic pump (unless you find that cut-and-dried approach to scientific inquiry comforting) but as an informer of and communicator of important information to the brain.  Beyond the anecdotal and traditional approach to the wisdom of the heart, there is also much science to back up the heart’s way of working with and through the brain.

Some years ago I became familiar with the work of the HeartMath Institute.  You can read about  HeartMath  at a PBSonline link here . Their scientific  evidence demonstrating the heart’s intelligence shows that the heart communicates with the brain in important ways by: sending neurological information to the brain and the rest of the body; the pulse sends energy in blood pressure that changes the electrical activity of brain cells; and that the heart communicates with the body on both a biochemical and electromagnetic level.

If it sounds new-Agey, it’s not, it is based on lots of well-recognized science and includes more traditional approaches to the body and consciousness.  Much of the science behind heartMath is also consistent with more traditional modes of thinking over human history (often collectively referred to as the perennial wisdom).

So what of the brain and its cognitive decline in old age or disease process in dementia?  There is more than enough fear of this condition or disease to go around – as if we need more fear in our daily existence.  I think a lot of this research and study tends to beg a very basic question – what is our life and our longevity for?

So . . . . what is age-associated cognitive decline as compared with dementia?  Do we really know?  Maybe.   But we still often hear people talking about an “Alzheimer’s epidemic” –  and his sounds extreme and scary.  I would agree with that characterization.  But if you disregard the emotionality and look at the demographic of baby boomers, it is apparent that the epidemic is a relative term uniquely associated with the aging baby boomers.  It is not some kind of communicable disease that affects a wide swath of the population after all.  But that doesn’t prevent me from sometimes telling people that Alzheimer’s can be “contagious.”  I don’t mean this literally of course, I mean it figuratively, that it seldom affects a single person individually because of how it often impacts our relationship with a person with dementia or who has trouble thinking.  Sometimes we “cover” for that person, to maintain their dignity or sometimes because we are in denial about what is happening.

The medical,  financial and psychosocial aspects of baby boomers with dementia is far reaching, especially in light of the fact that we are struggling mightily with those already affected by dementia for the greatest and the silent generations.   The term “Alzheimer’s” has come to be used as a somewhat generic term for a wide variety of dementia, caused by different types of disease processes or chronic conditions, but there are many ways of dealing productively with the challenges that dementia poses.  Early diagnosis is a good place to start and it can help the individual who has trouble thinking along with loved ones develop a strategy that can help maximize dignity and autonomy or other important values.

©Barbara Cashman 2013     www.DenverElderLaw.org

 

Human Rights and the Elderly

 

December is universal human rights month! Why December?  The Universal Declaration of Human Rights (UDHR) was adopted by the UN General Assembly on December 10, 1948.  After the end of the Second World War, the international community came together and vowed that such atrocities would not be allowed to happen again.  That’s right, there is such a thing as universal human rights under international law.  That’s the reason I went to law school – to study the international protection of human rights.  The UDHR formed the basis of important political and legal developments internationally and in many regions and individual countries, and spawning two International Covenants – on Civil and Political Rights and Economic, Social and Cultural Rights.

Now that I’ve been practicing elder law for many years, referring to the National Academy of Elder Law Attorneys’ Aspirational Standards (coincidentally, many internationally recognized human rights are “aspirational” in nature – meaning they are emerging or not fully recognized as rights as such in the legal system), I am seeing more of the broader connections between elder law and human rights.  So, based on that theme, I started looking around a bit more after I saw a reference in the latest query on the rights of elder people in international law.  Thomas Hammarberg, former Council of Europe human rights commissioner recently spoke in Gothenberg, Sweden   about the pressing situation faced by many elders in the European Community.  The number of elders worldwide is burgeoning and coupled with the Great Recession, many are faced with dire circumstances that are a breeding ground for exploitation and degradation.  The “rights of the elderly” is a concept that is both broad and particular at the same time, as it reflects the fact that the challenges and needs facing elders are quite diverse, reflecting a broad range of legal, social, financial, medical, emotional and social implications.

The UDHR, at article 25, para. 1 states

Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing, and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

The rights of the elderly often tend to be a right “to” something (such as security, health care, participation, dignity and nondiscrimination) as opposed to the United States’ historically preferred position to support freedoms “from” on the basis of governmental intrustions.  Of course, elders have well-recognized civil rights in this country to be free from exploitation, abuse, neglect and inhuman treatment.  How will the rights of elders evolve and develop?

Here’s a link to an interesting law review article entitled “International Human Rights and the Elderly,” published in the Marquette’s Elder Advisor and available here.     I also found an interesting abstract of a paper by a member of the law faculty at Montreal’s McGill University titled “The Human Rights of the Elderly: An Emerging Challenge.”     The most interesting aspect of this abstract is the connection made between “ageist” attitudes and discrimination in youth-glorifying and death-denying societies.  I find this connection especially apparent in our culture, which is obsessed with the “doing” aspects of life, and when we are no longer able to “do” as we previously did, we are diminished, worn down, used up and not entitled to the same level of respect as we previously enjoyed.  I think this attitude is not uncommon.  As long as our notions of dignity and respect are linked exclusively to “doing,” the ethics of how we treat people as rights bearing “beings” will be difficult to make coherent.   Included in this conundrum are the rights of the disabled along with those of many elders, whose capacities may be diminishing and are part of a large group of vulnerable persons in need of protection.  I found helpful an overview by the Human Rights Education Association about “The Rights of the Aged,” available here

I couldn’t write this post about the implications of youth-glorification and death-denial in our culture and legal systems without mentioning how our separation from our older, sicker and frailer selves also serves to distance us from the last part of our existence, our life journey  – dying.  Can the dying person and their dear ones reclaim grace and dignity in the process of dying?  Why yes, and thanks to The Soul of Bioethics newsletter I receive from The Healthcare Chaplaincy,    I learned about The Sacred Dying Foundation.    This follows on some familiar themes I have previously blogged about – how our treatment of death and dying informs our values about life. That’s all for now.

Dying is Part of Life

Dying is part of life – so why is talking about it so difficult?  Many reasons for that unanswerable question, but now – more than ever is the time we can start reflecting.  Never have we had so many octogenarians and nonagenarians on the fact of the planet.  Many are living longer more productive lives than they ever dreamed possible.  Some, many of them women, are running out of money.  As the life-extending reach of medical technology continues, it forces many questions, some of which are very uncomfortable.  I just read Judith Johnson’s fourth installment in the series of posts about making peace with death.  You can read it here.

Not all of us are afraid of death (which is one thing) or afraid of the process (quite another for many of us).  The Woody Allen quip comes to mind: “I’m not afraid of dying, I just don’t want to be there when it happens.”  Why does the dying process have such a bad rap?  Is it the uncertainty of what is happening, where someone is going (or not) that makes so many of us turn away?  It is a taboo based on fear and avoidance, how odd that it is avoidance of the inevitable.  How does that turning away from dying get unpacked into steps you can try if you want to be “present” and make peace with death?  Johnson offers five practical steps:  (1) see death as normal (part of life); (2) don’t try to run away or avoid it – this is the biggest tip in my opinion because she touches on the recognition that “death is a great teacher of how to embrace and honor life more deeply;” (3) focus on being of service to those involved in the process; (4) be authentic and express yourself in loving ways; and (5) allow yourself to experience the full range of grief and sorrow that are all parts of dying, death and grief.

I ran across another article about a new course being offered on Gabriola Island in Canada called “Nothing Left Unsaid.”  It looks to be an extension of the hospice conversation and all the services it offers for those not necessarily in the end stages of an illness.  I found the article’s reference to grief perhaps being classified as a mental illness in the next DSM (Diagnostic and Statistical Manual), and that reminded me of another article about that very topic – “Should Grief Be a Mental Illness?” by Joseph Nowinski, Ph.D.  It seems this fear that grief will be classified as a mental illness originated in a January 25, 2012 article entitled “Grief Could Join List of Disorders” and announces that, based on a new report, the criteria for depression are being reviewed by the American Psychiatric Association and could be expanded to include grief in the DSM-V.  Where does this leave those of us who are challenging the death-denying traditions and practices in our own ways? I think it is life-denying, because death is part of life.

The mental health implications of removing the grief exclusion from the definition of depression in the DSM-V are controversial, to say the least. Most of old age, along with many aspects (behaviors) of childhood are now “disorders” or fall within some arguable definition of a mental illness.  What does this say about our culture and its views towards aging, the dying process and death?  It is more of the death denial in our culture.  According to many longevity seekers, death is not necessarily inevitable or the result of natural consequences, rather it is more like a disease to be overcome, a challenge to be bested.  This reminds me of Dr. Sherwin Nuland, author of “How We Die,” and several other insightful books  A recurrent theme in his books is forthright talk about aging, dying and many other life topics that tend to make us uncomfortable.  Next time I’ll write about another favorite doctor/author of mine.