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