The Future of Dementia Care – Renegotiating the Terms

 

I’m a baby boomer, but since both of my parents are now deceased, I’m no longer a “boomer sandwich.”  What does the future hold for boomers, many of whom still have parents?  Many of our parents are experiencing the frailties of old age and many suffer some form of dementia.  The legal issues surrounding dementia are numerous and are typically intertwined with the related medical, financial, emotional and psychosocial  issues.

I read a lovely article in the May 20, 2013 issue of The New Yorker  about the fresh approach of one nursing home (I usually refer to these as SNF – short for skilled nursing facility)  to caring for people with dementia.  In “The Sense of an Ending,” Rebecca Mead looks at the plight of many of our elders who suffer from dementia. A large number of us would rather not be reminded that this is a side effect of aging for a certain number of people in our population.  Denial or “if I can’t see it, it won’t happen to me” has not proved to be an effective strategy of coming to grips with any disease or health challenge that faces us.  This story is among other things, about one institution that offers a decidedly non-institutionalized approach to dementia care, or a person-center alternative approach.

One of the people interviewed for the article, the director of education at the Beatitudes Campus in Phoenix, refers to people with dementia as “people who have trouble thinking.”  What a contrast from the dominant theme of the medical model of our “secure units” at most SNF.

I liked the article’s focus on recognizing and honoring people’s tastes, preferences and their personal histories.  This is about the “who” of the person as opposed to the “what”  – the latter of which is focused almost exclusively on the medical problem and the loss of cognitive and other abilities.  Mead’s article also describes some of the training the staff at the Beatitudes’’  dementia facility does to better empathize and understand people with dementia, and this honors the idea that we have something to learn from people with dementia.  Seven insights we can gain are described here.

The person-centered approach was formulated by the late Tom Kitwood, a British psychologist and pioneer in the field of dementia care.  His approach focuses on the maintenance of well-being in persons affected by dementia and is concerned with psychological needs including:

  • maintaining a person’s identity
  • engaging the persons or supporting them in come meaningful tasks
  • providing comfort (seeing the human dignity in each person, expressing warmth and acceptance)
  • recognition of feelings and for relationships – past and present

Recognizing these in a person with dementia does good not only for the person with the disease but also the loved ones and family members.  I often think of dementia as “contagious” because it does not affect a single person experiencing the effects of the disease or condition, rather it has a ripple effect on others.  Dementia is often the “beginning of the end” is it is often accompanied by a host of other ailments and is often a terminal illness

In the meantime, we have a war on Alzheimer’s in this country, no doubt due in no small part to the “silver tsunami” of baby boomers who will be at risk for the disease or some form of dementia.  Our obsession with science and medical advances  to come to our rescue is readily apparent here.  I liked Professor Partha Mitra’s critique of the multibillion dollar neuroscience effort to draw up a “brain activity map.”  Read it on Scientific American online here.

Kitwood’s work has been around for many years, long enough for the ideas to be kicked around, rejected and adopted in parts in many parts of the world.  The notion of personhood is a powerful one and can help to reassess the appropriate limits of our medical model of dementia care in this country.

People with dementia challenge us to engage with them on their terms, how we can do that is up to us, what we have to learn from them.  I have once or twice joked (yes, part of my penchant for jokes about death and dying and all manner of serious topics) that many people with dementia are people who are typically better than most of us at living in the present moment.

This is not to say that we ought to give up looking for some preventive measures or a “cure” for some types of dementia, this is a reorientation of the focus of care.  Our system of protective proceedings, in Colorado known as guardianship (for an incapacitated person), focuses exclusively on what the person has lost and is no longer able to do for themselves.  The substituted judgment which is the model for decision-making is based on a vague notion of “best interests” which purports to be some standard “out there” that is general and vague enough so that it could apply to most anyone.

Some things are refreshing when examined in a different perspective.  What about applying the “golden rule” (I prefer Rabbi Hillel’s version  “what is hateful to thee, do not unto thy fellowman”) in guardianship proceedings to determine who makes decisions and what type of living arrangements are appropriate?  The person-centered approach recognizes there is still a person there, albeit one affected by the ravages of dementia, but who is often able  to be “held in their identity.”  I think this approach and others like it have much to teach us – whether we work in the legal, medical, mental health or financial worlds – about how to live and what and whom to value.

©Barbara Cashman     www.DenverElderLaw.org

Dementia, Capacity and Old Age: part II

Part I of this post began: In our death-denying and youth-glorifying culture, how does dementia figure as a disease? Is there a cause? Is there a cure?  What pills can be prescribed?  We might choose to view dementia is a dark side of longevity.  Where we have unprecedented longevity due to medical advances, isn’t it right to wonder about what our lives are for – especially if we have more length of days to ponder the meaning.   As I frequently comment to clients, we have never had so many old people on the face of the earth before.  Many of the challenges we face in supporting  elders and caring for them – the legal, financial, medical, social and emotional challenges – are new problems and require new thinking. 

How is it decided who gets to go back home, back to their independent living arrangements, after a discharge from a hospital or rehab facility?  Long term living arrangements for elders in institutions have been becoming more rare – but is this trend likely to continue as more of the baby boomers reach retirement age?  In the institutional setting, a major issue presented in this context of dementia and capacity is the “choice between” autonomy and restraint.  This is a recurrent dilemma for many elders living in facilities and the staff members charged with managing their care in these institutionalized settings.  This is “big brother” in the context of the growing number of elders.

What is it that matters about old age – why do so many people want to live longer?  When we focus on the do-ing part of our lives, extending that “active adulthood” indefinitely, or at least valuing that part of our lives as the only part worth maintaining and carrying on, we do disservice to the be-ing part of our lives.  I recognize that the vast majority of our culture is focused on the doing, the active (not contemplative), the choosing (not reflective) and the control, and that these are the hallmarks of a culture that holds choice and self-determination in high regard.  However, there is also the more fundamental backdrop of human dignity that often gets overlooked when we get caught up in our rights-bearing choice-making mindset.  This is the challenge of dementia and and other end-of-life scenarios and why we need to rethink our thinking in some fundamental ways.  For an institutionalized person with advanced dementia, that person is entitled to dignity and respect as a person, simply by reference to their being alive, and without reference to a focus on all the capacity that a person has lost.  How many times have we heard comments like “look at him now, he used to be a university professor.”  I think these comments are symptomatic of our unbalanced focus on the do-ing part of our adult lives, (which undoubtedly helps many of us maintain our sense of control over our lives) at the expense of the be-ing aspect of our lives.    We exist as people  as long as we are alive, as human beings.

Below I quote the entire poem “Tithonus,” by Alfred Lord Tennyson, a  poem about aging as told by the lover of the goddess Eos, whose immortality was granted by Zeus – but Eos forgot to ask Zeus for his eternal youth and he was thereby left in an eternal prison of old age.

The woods decay, the woods decay and fall,

The vapours weep their burthen to the ground,

Man comes and tills the field and lies beneath,

And after many a summer dies the swan.

Me only cruel immortality

Consumes; I wither slowly in thine arms,

Here at the quiet limit of the world,

A white-hair’d shadow roaming like a dream

The ever-silent spaces of the East,

Far-folded mists, and gleaming halls of morn.

Alas! for this gray shadow, once a man–

So glorious in his beauty and thy choice,

Who madest him thy chosen, that he seem’d

To his great heart none other than a God!

I ask’d thee, “Give me immortality.”

Then didst thou grant mine asking with a smile,

Like wealthy men who care not how they give.

But thy strong Hours indignant work’d their wills,

And beat me down and marr’d and wasted me,

And tho’ they could not end me, left me maim’d

To dwell in presence of immortal youth,

Immortal age beside immortal youth,

And all I was in ashes. Can thy love

Thy beauty, make amends, tho’ even now,

Close over us, the silver star, thy guide,

Shines in those tremulous eyes that fill with tears

To hear me? Let me go: take back thy gift:

Why should a man desire in any way

To vary from the kindly race of men,

Or pass beyond the goal of ordinance

Where all should pause, as is most meet for all?

A soft air fans the cloud apart; there comes

A glimpse of that dark world where I was born.

Once more the old mysterious glimmer steals

From any pure brows, and from thy shoulders pure,

And bosom beating with a heart renew’d.

Thy cheek begins to redden thro’ the gloom,

Thy sweet eyes brighten slowly close to mine,

Ere yet they blind the stars, and the wild team

Which love thee, yearning for thy yoke, arise,

And shake the darkness from their loosen’d manes,

And beat the twilight into flakes of fire.

Lo! ever thus thou growest beautiful

In silence, then before thine answer given

Departest, and thy tears are on my cheek.

Why wilt thou ever scare me with thy tears,

And make me tremble lest a saying learnt,

In days far-off, on that dark earth, be true?

“The Gods themselves cannot recall their gifts.”

Ay me! ay me! with what another heart

In days far-off, and with what other eyes

I used to watch if I be he that watch’d

The lucid outline forming round thee; saw

The dim curls kindle into sunny rings;

Changed with thy mystic change, and felt my blood

Glow with the glow that slowly crimson’d all

Thy presence and thy portals, while I lay,

Mouth, forehead, eyelids, growing dewy-warm

With kisses balmier than half-opening buds

Of April, and could hear the lips that kiss’d

Whispering I knew not what of wild and sweet,

Like that strange song I heard Apollo sing,

While Ilion like a mist rose into towers.

Yet hold me not for ever in thine East;

How can my nature longer mix with thine?

Coldly thy rosy shadows bathe me, cold

Are all thy lights, and cold my wrinkled feet

Upon thy glimmering thresholds, when the steam

Floats up from those dim fields about the homes

Of happy men that have the power to die,

And grassy barrows of the happier dead.

Release me, and restore me to the ground;

Thou seest all things, thou wilt see my grave:

Thou wilt renew thy beauty morn by morn;

I earth in earth forget these empty courts,

And thee returning on thy silver wheels.

Alfred Lord Tennyson

Does our culture’s denial of death as part of life, our glorification of youth at all costs condemn us to Tithonus’ fate?

If we cannot stop to think about the purpose of our lives during our adult years, can we abandon to hope that such meaning will somehow arrive at our doorstep, unbeckoned?  If this were to happen to us, would we even recognize its meaning?   I think not.  Elderhood is an extension of adulthood, and growing up is – quite simply – optional in our culture.

©Barbara Cashman     www.DenverElderLaw.org

Dementia, Capacity and Old Age: part I

In our death-denying and youth-glorifying culture, how does dementia figure as a disease? Is there a cause? Is there a cure?  What pills can be prescribed?  We might choose to view dementia is a dark side of longevity.  Where we have unprecedented longevity due to medical advances, isn’t it right to wonder about what our lives are for – especially if we have more length of days to ponder the meaning.   As I frequently comment to clients, we have never had so many old people on the face of the earth before.  Many of the challenges we face in supporting  elders and caring for them – the legal, financial, medical, social and emotional challenges – are new problems and require new thinking.

Self-determination is important in medical care, this is why informed consent is required.  Perhaps because medical care is more of an ongoing need in most people’s lives, health care providers seem to be much more capable of embracing the gray area (no pun intended) of self-determination regarding patients with severe mental impairment, many of whom are elders with dementia.

In the legal context, an adult person retains the ability to make decisions for himself or herself, and this capacity is presumed by our legal system and continues generally until a person is determined to be “under a disability” meaning that a probate court has adjudicated the person incapable of managing very basic requirements for themselves.   Colorado law defines an incapacitated adult as one who is “unable to effectively receive or evaluate information or both or make or communicate decisions to such an extent that the individual lack the ability to satisfy essential requirements for physical health safety, or self-care, even with appropriate and reasonably available technological assistance.  Colo. Rev. Stat. §15-14-102(5).

But there are many practical shortcomings to the legal description of “incapacitated” and the requirement that a probate court is the only court capable of determining such, thereby stripping a person’s civil rights after a legal proceeding.  In this regard, the legal system, for better or for worse recognizes individuals’ rights to self-determination, even when that right to autonomy cannot effectively be expressed or communicated.  By contrast, the medical setting allows much more flexibility and recognition of people’s fluctuating levels of capacity and variable mental states.  If you have ever known a committed coffee drinker state “don’t ask me to decide anything that matters until I’ve had my cup of coffee” then you realize that the context for these fluctuations in mental states has always been with us.  These fluctuations tend to become more pronounced for many of us as we age, and for some people who experience cognitive decline that is disease related and not “merely” a function of aging.  So what does dementia look like?  The Alzheimer’s Association has described ten warning signs:

    1. loss of memory that is life-disrupting
    2. difficulty performing familiar tasks
    3. problems with language, word finding – written or spoken
    4. confusion or disorientation as to time and place
    5. poor or declining judgment
    6. difficulty with abstract thinking, visual and spatial orientation
    7. losing or misplacing things and inability to retrace steps
    8. changes in mood or behavior
    9. loss of initiative, withdrawal from work and social activities
    10. personality changes

 

What we often overlook is that these determinations are made relative to what our life was like before some fixed period of time, some diagnosis or a tragedy.  Often there is a traumatic event that wakes family members from their slumbering denial of an elder’s difficult situation.  Notwithstanding the lifelong fluctuation of our capacities, this line of capacity/incapacity gets narrower  and more pronounced as elders in frail health or with dementia move closer to the place of incapacity.

 

When we look at institutionalization, a focus on people’s autonomy and rights may sound an alarm bell when we think about the compromises and those made into real or perceived injustices leveled at frail or demented elders.  Some of these people may be subjected to physical or chemical (pharmaceutical) restraints, so as to make them more safe and more manageable in a community.  As long as we focus on the doing part of our autonomy at the expense of the being, we necessarily focus on the past and all the losses sustained.  We are unable to really see person as they are, in the present moment.  This at the expense of meaning.  I will close this post with a portion of a poem by Walt Whitman:

Old age, calm, expanded, broad with the haughty breadth of the universe,

Old age flowing free with the delicious near-by freedom of death.

Song of the Open Road, verse 12,  Walt Whitman

to be continued…

©Barbara Cashman     www.DenverElderLaw.org

 

May 1st is Law Day – Happy Law Day!

Law Day – what is that about. . . .? I haven’t seen the greeting cards to mark the occasion! The theme for Law Day 2013 is Realizing the Dream: Equality for All. This year’s commemoration is all about civil and human rights, the American Bar Association has some great resources available here.


This year’s Law Day is a fairly patriotic event in that it marks our nation’s long history in the struggle to honor and promote people’s civil and human rights. This year is the 150th anniversary (or sesquicentennial if you prefer that) of the Emancipation Proclamation. In Denver, our local and state bar associations are co-sponsoring a screening of the 2012 film Lincoln.  The event even has a CLE (continuing legal education for lawyers) component.
On the civil rights theme, I would like to have linked to a youtube showing the historic “I Have a Dream” speech by the Rev. Dr. Martin Luther King, but there is a bit of an intellectual property right issue there.
Sometimes lawyers forget why they went to law school and what the struggle for justice, still ongoing, is about. Law day seems to be an observance primarily for lawyers and bar associations, but it also has an important component of education about our legal system as well. Our system of justice cannot effectively function when people are not educated about their rights. In most of Europe and many parts of the world, May Day is not law day but is a commemoration of workers’ rights.
I looked up the history of Law Day in the US and discovered it was the idea of Charles S. Rhyne, President Eisenhower’s legal counsel and also president (the youngest person to serve in that capacity) of the American Bar Association. My connection with Charlie Rhyne? He started the World Peace Through Law effort. I attended the 1987 Seoul Conference on the Law of the World and served as rapporteur for one if its committee meetings. The organization is now known as the World Jurist Association.  International law is grounded upon the recognition of the rule of law among nations.
So, Law day and civil rights – where’s the elder law connection? I have previously blogged about the Universal Declaration of Human Rights in the context of elders’ rights.  For their part NAELA, the National Academy of Elder Law Attorneys (of which I am a proud member) has a press release here about their efforts and elder and special needs law attorneys’ efforts to educate their community about legal options. They observe the entire month of May as Elder Law Month.
So, you may not be thinking about the civil rights and the elderly and incapacitated when you consider civil right. But make no mistake – elder law is a hotbed for civil rights – why? Guardianship proceedings (as they are known in Colorado, in most state jurisdictions protective proceedings are known as guardianship of the person and guardianship of the property – for what is known as conservatorship in Colorado). As the number of elders continues to increase, we will need to develop more appropriate legal mechanisms to manage the gray area of defining incapacity. This is where the law evolves to meet the needs (that’s the goal at any rate) of a changing demographic and society.
How will I spend law day? I will be grateful for being a citizen of this great country where the rule of law is well respected. What is “the rule of law?” Okay, I skipped the definition in my trusty Black’s law dictionary – too stuffy sounding and like the Wikipedia one better: it refers to the authority and influence of law in a society, especially as a constraint upon behavior, including behavior of government officials.  When I was studying international law back in my law school days, this was a revolutionary concept in many legal institutions. In fact, it still is in many parts of the world. One of the best parts about being a lawyer is staying on top of developments and figuring out how to tailor these to meet a particular client’s needs. Estate and elder law provide me a wonderful opportunity to advise people about their legal options and counsel them in the context of what works best from their own legal, financial, medical and emotional point of view. I am grateful for my clients and I love being a lawyer. . I wouldn’t have it any other way.
I think it’s a fitting way to observe Law Day – even if it is spent with lots of boxes and the movers who will be moving my office from southeast Denver to Centennial, two miles south of my current office.
              My new address is 7955 East Arapahoe Court, Suite 3000, Centennial, CO 80112. My new direct line is (720) 242-8133.

©Barbara Cashman www.DenverElderLaw.org

Fraying Fabric: Dementia, Depression and Loneliness

There have been some recent articles about studies relating to loneliness and dementia.  Here is a link to “Loneliness Increases Dementia Risk Among the Elderly,”  which discusses the link between loneliness (NOT living alone or other social isolation) based on a three-year long Dutch study of elders. The jury is still out about the causality of the relationship (does loneliness lead to dementia – or the other way round?), but there is a strong correlation. The authors of the study are quoted as concluding “further research is needed to investigate whether cognitive deterioration and dementia are a consequence of feelings of loneliness or whether feelings of loneliness are a behaviourial reaction to diminished cognition.”

This report doesn’t necessarily tell us anything particularly new, but several studies have used different techniques over the years to demonstrate the correlation.  Here’s a link to an article published in 2007 entitled “Link Explored Between Loneliness and Dementia.”  Is loneliness one of the risks associated with aging, or is it something that some people have all their lives (coping behaviors, approaches to life and relationships) that is exacerbated by the many trials of old age?  If you are lonely at this time in your life, could “forgetting” be a coping behavior or affect along the lines of being more trusting and more optimistic?  These latter two phenomenon have been noted by psychologists and neuroscientists.  To reiterate, we have never had this many old people on the face of the earth before, so there are more “test subjects” in this regard. . . .

This brings me back to “elderhood” and the need to forge new connections and maintain old ones in later years. In the UK there is even a campaign to end loneliness and this past year the organization aiming to reduce chronic loneliness for people over 65 launched a “Dementia Awareness Week.”

Dementia and loneliness seem to be one of the combinations that may be difficult for clinicians to study because it involves a wide range of factors, not the least of which is self-reporting by people of loneliness.  Are social activity and engagement enough for persons to stave off dementia?  Will there be an effective “prescription” in the near future for preventing the development of or  slowing the advance of dementia that involves more social engagement?  what will this look like?

The roots of elderhood begin in a person’s forties and fifties – at that sometimes imperceptible and for some of us dramatic divide between the first half of life and the second.  I just bought a new Kindle and look forward to reading Richard Rohr’s book “Falling Upward: A Spirituality for the Two Halves of Life” (Jossey-Bass 2011)  on my new toy.  In the meantime, there are the library books – my most recent find relating to this topic is “Born for Love: Why Empathy is Essential and Endangered,” by Maia Szalavitz and Bruce Perry (2010: Morrow).  The link between empathy and loneliness is profound: can we as individuals allow ourselves to see and feel another person’s loneliness and isolation?  How might that change our own lives and those of others if we were freer and more capable of reaching out to and being with another?  It might change our world.

This reminds me of a favorite Anais Nin quote:   We see the world not as it is but as we are.

If we have lived with much pain and fear in our lives and our reaction is the slow tightening of our heart, it can become difficult to open to people who come into our lives to share the world with us, in whatever way they do.   Fear of change is essentially fear of life – this makes me think of the ancient Greek Heraclitus and his observation that we can never step into the same river twice.  How do we look at our own life – do you tend to view life as a process of becoming – or perhaps more as a series of “doings” or a “bucket list” or some other forms of accomplishments?  I would submit that our youth-glorifying culture tends to focus exclusively on the doing, and when there is no more “doing” left for us, life becomes pointless.   This is not to minimize the importance of doing, rather it is to put doing in its proper context . . . .  Loneliness may simply be that fear of rejection, that sentiment of “why bother – they won’t like me anyway.”  Perhaps the forgetting, which is the dementia – is a coping mechanism for this in an aged brain.  Contrast this reaction with letting go of the fear and anxiety of pain and pain avoidance and embracing the change.

Here is another Anais Nin quote:

Each friend represents a world in us, a world not born until they arrive, and it is only by this meeting that a new world is born.

Empathy can allow our hearts to open to new people and experiences and new worlds for us if we become friends with another.  In short, it can keep us alive.

This reminds me of a favorite and very simple prayer: that I may live until I die.

Perhaps too many of us are dying prematurely, by our own hands, hearts or minds  – slowly and almost imperceptibly.

©Barbara Cashman     www.DenverElderLaw.org

Durable Powers of Attorney: Law in a State of Uncertainty

 

Reba's Gaudi Mosaic

 

I love this picture of Gaudi mosaics.

It was taken by a friend on a recent trip to Spain.  Why the mosaic theme?  Because the field of  elder law, and the drafting and use powers of attorney in particular, are emblematic on our individual reliance on one another, especially during times of anticipated or unanticipated vulnerability.  By the time we reach mature adulthood or “elderhood,”  our lives typically appear to be mosaics of experience, identity and relationships.  Our interconnectedness and reliance upon others is certainly indicative of a mosaic pattern.  So – you’re wondering, okay Barb, what does THAT have to do with durable powers of attorney?

Durable powers of attorney have come a long way over the last thirty years or so.  This is a good thing because we have an ever-growing number of baby boomers swelling the ranks of “older Americans.”  Most boomers aren’t yet ready to use the term “elder law” as a field of law applicable to them!  Durable powers of attorney (POA for short) is one of my favorite topics to talk and write about because there are so many different directions for a discussion.  I’ll focus on the general financial POA for this post.  In Colorado, we don’t technically need to refer to POAs as “durable” anymore because under the Uniform Power of Attorney Act that became effective January 1, 2010, all powers of attorney are durable unless stated otherwise.  I’d like to start with some questions:

  • What is the purpose of a POA – is it just a preventive tool to keep people out of protective proceedings in probate court?
  • How does drafting a POA both protect and make more vulnerable a principal who is naming an agent to act for her?
  • When does the principal agent relationship become “official” and how do we manage problems/difficulties/challenges to a POA’s use?

I could go on with lots more questions, but suffice it to say they would by and large have a single answer:  “it depends . . .”  How typical for a lawyer to respond in this way!    The bottom line for POAs and what makes them so “interesting” (read: challenging)  from an elder law attorney’s point of view is that our legal system does not tolerate ambivalence very well.  Our system is grounded on the values of predictability, consistency and logic.  In many important ways, the legal and practical implications and applications of a POA are inherently unpedictable.  Why is that?  Because life itself is uncertain and unpredictable and a POA is in this respect a “life management” tool.  Incapacity for older people may or may not be considered in the same category as mental illness in terms of how the legal system treats individuals, but for probate court purposes, there are few major differences.   So are you saying that old age is like a mental illness Barb?!  Not exactly.

As a drafter of POAs as preventive and useful documents, I have to say that the document is inherently fraught with difficulties – some of which include questions like:

  • does the document actually confer power on an agent? (Note that in Colorado there is not a requirement that a person being considered for a conservatorship be “incapacitated” as is required for a guardianship.)
  • how will the holder of the power – the agent – behave? (will they be kind, conscientious and respectful or wield absolute power in a self-serving way?)
  • what will happen to the principal when the agent begins acting on her behalf?
  • who will be watching to ensure that the power is not abused or used for improper purposes?
  • and how will abuse be detected?

A POA document is a powerful tool that can be used for either proper or improper purposes, by someone employing it for its intended purpose as a precision tool in the event of emergency, or as a blunt instrument to gain control over another’s finances and life.  Attorneys who draft powers of attorney owe it to their clients to explain the document and how it can be used and potentially abused.  It’s true that it is relatively easy to get a POA document “off the internet,” but will you know if it is valid for its intended purposes according to the the law of the state in which you reside?  What about how to use it?  Don’t forget that the most powerful tool to prevent abuse of a POA – whether it be a result of inadvertence, incompetence or bad intent – is education.  This is where the elder law attorney comes in. . . .

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

What does living with Dementia Look Like?

I recently read a blog post written by a woman in Florida (she blogs under the name “stumblinn”) who has been living with young onset dementia for fourteen years.  Her post of May 8, 2012 was entitled “Dementia and spirituality” and you can read it here .  She writes

I am glad that I have never seen myself as a victim of or suffering from dementia.   Having dementia is not a choice for me, but not suffering from it is.   We suffer when we resist what is, see what happens to us in life as unfair.   When we remain aware at all times that everything that happens is an opportunity for learning and spiritual growth, then there is no suffering.    (That does not mean there are no challenges to face as without them, there would be no growth.)

I found her comments instructive.    It reminded me of an article I ran across a few years ago published by Baylor University.   I liked this article because it considers dementia in the spiritual context and asks “what is it that makes us who we are?”  It is illustrated with a picture of a quilt to demonstrate how the story of each of our lives is connected to others’ lives.  Dementia may rob people from remembering their “story,” but others can help them remember by reinforcing each individual’s uniqueness and honoring the person’s “be-ing” not just their “do-ing.”   I’ll quote Rabbi Abraham J. Heschel’s comments at the White House Conference on Aging, back in 1971:

Older adults need a vision, not only recreation.

Older adults need a dream, not only a memory.

It takes three things to attain a significant sense of being: God, a soul and a moment.  And the three are always there. 

Just to BE is a blessing, and just to LIVE is holy.

The Alzheimer’s Association has a list of resources (articles, books videos, etc) under “Spirituality and Dementia” that is available here.

The U.S. has recently declared a “War on Alzheimer’s”  and some commentators are optimistic that Alzheimer’s Disease may be treatable by 2025 – read an article in the April 2012 Scientific American here,  but while this focus may prove successful to combat and prevent in the future there are many people – both individuals and families who face many different types of challenges right now.  This is why I liked stumblinn’s post.

The World Health Organization  issued a news release on 4/11/12 under the title “Dementia cases set to triple by 2050 but still largely ignored”    and essentially recommended that dementia public awareness and diagnosis needs to be expanded beyond the eight nations who currently have national programs to address dementia.  One of the topics covered in the release was providing more support to caregivers.    In this country, we need to continue to expand our understanding of people with dementia as people first, not medical problems to be fixed.

In the meantime, there continues to be evidence that lifestyle choices and habits still factor into the dementia diagnosis  in significant ways, U.S. News article “Everyday Activities Might Lower Alzheimer’s Risk” is here  and efforts to get people with dementia out in nature to reconnect with it to get back in better touch with their essential humanity  are helpful as are programs reconnecting dementia patients through art (an article in The New Old Age series).  I’ll explore more about gratitude for “what is” in a later post.

©Barbara Cashman, LLC

 

Who Is Taking Care of the Caregivers?

Did you know that according to the 2012 Report by the Alzheimer’s Association, over 15 million Americans provide unpaid care for a person with Alzheimer’s or some other form of dementia? f  The report, at page 27, also states that 80% of the care provided at home is given by family caregivers and that fewer than 10%  of older adults receive all of their care from paid workers.  The study also shows, in colorful bars, the proportionally larger number of caregivers of people with dementia (as compared with caregivers of older people) who provide assistance with activities of daily living (getting out of bed, dressing, toileting, bathing, managing incontinence, and feeding) along with the larger number of those dementia caregivers for both the 1-4 years and the 5+ years categories for the length of time of caregiving.  Page 31 of the report demonstrates that dementia caregivers suffer from 1.5 greater emotional stress level than the other elder adult caregivers, while the physical stresses were slightly lower. This report is very eye-opening.  One of my first questions about this is  – who is taking care of the caregivers?

Fortunately, the Alzheimer’s Association of Colorado offers assistance in the form of classes and workshops for people who are touched by Alzheimer’s and other forms of dementia.   A helpful list of resources available in Colorado can be found here.  Dementia care is stressful on a number of levels, so you may want to make sure that financial, legal and medical arrangements are already in place for the affected person.

So how do dementia caregivers of family members cope with the stress? I am a regular practitioner of yoga, so I was pleased to see this post on “Yoga for Caregivers: Meditation May Lower Depression, Improve Brain Functioning in Dementia Caregivers of 3/13/2012 available here.

Many times a better understanding of the behaviors of people with dementia can be helpful as can adjustments to communication techniques.  The Family Caregiver Alliance offers the following 10 tips:

1.      Set a positive mood for interaction – your attitude and body language communicate your feelings and thoughts stronger than your words.

2.      Get the person’s attention and limit distractions and noise, use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.

3.      State your message clearly, using simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.

4.      Ask simple, answerable questions, and ask them one at a time (those with yes or no answers work best).

5.      Listen with your ears, eyes and heart and be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.

6.      Break down activities into a series of steps. This makes many tasks much more manageable.

7.      When the going gets tough, distract and redirect. When your loved one becomes upset, try changing the subject or the environment.

8.      Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.

9.      Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.

10.  Maintain your sense of humor. Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.

The tips are from  http://www.caregiver.org

Some of the distressing facts about caregiving are According to the American Medical Association, 16 percent of caregivers have worsened health after they’ve begun caring for someone. And about half of Alzheimer’s disease caregivers go on to develop psychological distress.  So please remember, if you are caring for a person with dementia or want to help support someone who is providing that care, there are many sources of support available, so please take good care of the caregiver and get help if you need it.

Estate Planning for Blended or Nontraditional Families

A blended family or nontraditional family is a family in which one or both of the adults have children from a previous marriage or relationship.  In case you’re thinking “I didn’t have an estate plan for my first marriage –why would I need one for the second one?”  you may be overlooking the” details” of your children or grandchildren or unfamiliar with how best to take care of your second spouse or partner!  If you have children from a previous marriage, you may want to determine how your second spouse or partner and your kids will divide your estate.  Longevity (incapacity) planning looks at how the decision-making responsibilities will be shared among the family members or loved ones involved.  Both the estate and longevity planning will depend on your age and circumstances, as well as how old your kids are, and you may consider whether there are educational expenses or grandkids you want to provide for, and so on.  This is an especially important discussion to have with your second spouse or partner so that the concerns, goals and techniques are clear going forward.  A blended family situation is more likely to be driven by different estate planning goals for husband and wife or  life partners, than in a marriage or partnership the first time around – when a couple may be younger and share more common goals and there is typically only one set of children.

This estate planning, like all others, starts with a discussion.  So – what are some of the benefits of blended families estate planning?

  • helps identify goals of each spouse or partner – who they want to support and for what purposes;
  • can bring clarity for who provides what kind of support for  whom;
  • takes into account any pre-nuptial or post-nuptial agreements (these are known as “marital agreements” under Colorado law);
  • sheds light on financial and medical concerns and authority to make decisions in the event of incapacity or death.

If you are concerned about any of these issues and want to avoid a conflict-laden situation where  your surviving spouse or partner may be at odds with your kids or other family members, it is worth looking into making a plan.  A comprehensive estate plan will take into account your probate and nonprobate assets, the beneficiaries, and will also provide powers of attorney to provide for your welfare during short or long term disability or incapacity.  Read the CBA Estate Planning brochure

If you are looking to the future together and are realistic, making an estate plan can help cement expectations.  I liked this Ehow article on “How to Blend A Family,”  and no, it doesn’t involve a small kitchen appliance!

The term “blended families” doesn’t just apply to married couples – it can apply to unmarried couples as well, including a man and woman who could decide to marry each other if they chose to at a future date, or a same sex couple whose partnership may not be recognized as a marriage.  In Colorado, unmarried persons have the option of giving certain rights to another unmarried person through a Designated Beneficiaries Agreement. Find general information about Colorado Designated Beneficiaries Law here.

This agreement can provide benefits to the survivor of the two parties to a DBA, but does not provide disposition of property or confer rights for the second to die.  More information in my article here.

Okay, you may be interested in looking into this further, but maybe you don’t yet have a clear picture of what could happen if you (1) do nothing or (2) make assumptions without consulting the spouse or partner.  What are some things that could go wrong?

  • old wills and other plans are still in place that do not reflect current goals and concerns;
  • if you have minor children, outright gifts to them may be controlled by your former spouse;
  • picking a personal representative, guardian, trustee or co-trustee or other key people who do not get along with each other;
  • making your kids wait until the death of your surviving spouse or partner to inherit anything, which can fuel resentment;
  • failing to update beneficiary designations on nonprobate assets like retirement accounts, pay on death accounts, etc.  (these are not automatically changed as a result of divorce);
  • leaving everything to the surviving spouse or partner and assuming that he or she will “take care of” your kids; and
  • [this one is not unique to blended families]  leaving large amounts of money or property outright to someone who is not prepared to handle it – a/k/a the lottery effect.

If you are part of  a blended family and haven’t discussed with your spouse or partner what your wishes are, you may want to start that initial conversation – the first step to making plans.