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

Business Succession Planning for Breakfast

 

 

Last Thursday morning I attended a breakfast program hosted by The Denver Foundation at the J.W. Marriott.  The program was entitled “Beyond Tax Law: Non-tax Aspect of Business Succession Planning” and was presented by Stephan Leimberg.  I have been going to these breakfast programs for several years now and they always feature excellent speakers and timely topics.  The Denver Foundation also hosts the monthly meetings of The Women’s Estate Planning Council of which I am a member.

So – what about Leimberg’s presentation?  It was pretty snappy and hit home the focus that attorneys and other professional advisors need to consider and take to heart when dealing with small businesses – especially family businesses: focus on the tax and other technical aspects of business succession and exclude family and relationship dynamics at your (and the family business) peril!

In his materials, Leimberg presented some eye-opening facts – for example that one-third of the Fortune 500 is family-owned and that family businesses purchase more than $1 Trillion of goods and services annually.  Part of the presentation was about identifying the traits of the family businesses (about 55% of business are family controlled) that have been successful and how they managed and successfully manage to bridge the family/business divide.

In a family business context, there is not only the business future at stake but also the functioning of the relationships of the family members – both inside and outside the business context.  Part of Leimberg’s presentation focused on the reality-based aspects of a business:

will a business die with its owner?

should the family risk running the business?

on what is the success of the business dependent?

is there a strategy in place to overcome inertia?

What about all those different hats?  I will make reference here to “hats” thinking of DeBono’s six hat parallel thinking….

    • WHITE: facts and information
    • RED: feelings and emotions
    • BLACK: critical analysis of logical flaws
    • YELLOW: positive logic applied to seek harmony or benefits
    • GREEN: new idea or perspective, creativity
    • BLUE: the big picture

Edward  DeBono, Six Thinking Hats: An Essential Approach to Business Management (1985: Little, Brown) His idea for parallel thinking is that the brain can be “sensitized” to think in broader ways.   Okay, what also comes to mind is a kid lit fave of mine: Caps for Sale, by Esphyr Slobodkina  (remember the cap peddler and the mischievous monkeys?).

I thought Leimberg’s numbers about how many family businesses have done succession planning were a bit high.  Perhaps this is because of the relative size of the family business he was looking at.  When I presented at the CBA/CLE program “Advising Small Companies” in February  I looked at figures for small businesses that were akin to estate planning numbers for parents of young children – the vast majority of both groups, who are in greatest need of succession or estate planning – have nothing in place.  The Small Business Administration has some helpful resources available here.   What I covered in my February CLE presentation were “the four D’s”:

          • Detour
          • Dissolution
          • Disability
          • Death

Things don’t always go as planned!

“I feel as if I were a piece in a game of chess, when my opponent says of it: That piece cannot be moved.” 

Soren Kierkegaard

My main focus at that CLE  presentation was on discussing techniques to motivate clients who are focused on the success of their businesses to think beyond survival mode and make a plan for the unplanned and the inevitable.  For a definition of business succession planning, I used Louis Mezzullo’s (American College of Trust and Estate Counsel President) definition: “Planning for the orderly transfer of the management and the ownership of a business to new managers and new owners to avoid a liquidation of the business as well as unnecessary taxes and other expenses, and in a manner that carries out the family’s nontax objectives.”

Bottom line for my takeaway of Leimberg’s presentation – the importance of getting family business clients to really start thinking about succession planning (estate planning for a business) and its importance from a strategic point of view.  I liked this approach, which emphasizes relationship dynamics in the success or failure of a business – whether it is a family business or a small business that is not family owned.  Following a course according to a strategy is always preferable to reacting to an unforeseen event or an emergency.

©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