While in her 80s, playwright Florida Scott-Maxwell wrote a memoir, The Measure of My Days (1979), about her experiences as on older woman. She observed: “I have no duties except to myself. That is not true. I have a duty to all who care for me – not to be a problem, not to be a burden. I must carry my age lightly for all our sakes . . . Each day then, must be filled with my first duty, I must be ‘all right’” (p. 31). In many ways, Scott-Maxwell’s observations apply to people living with dementia, whose days may be literally measured by the presence or absence of “problematic behaviors” and their ability to not be a problem.
There are many complicated issues accompanying dementia and the provision (and receipt) of effective care and treatment. Certainly, a major goal of intervention research is to reduce or eliminate symptoms (e.g., aggression, irritability) and concomitant conditions (e.g., depression, apathy) that cause stress or concern to people living with dementia and caregivers alike. My intention is therefore not to present an oversimplification of dementia and challenges to care. Instead, I want to more broadly consider: What are the goals of intervention measurement in the face of progressive, non-curable cognitive decline? Is it enough to be “all right” and, if so, by whose measure?
There are, of course, several challenges to moving beyond “all right.” First, funding and reimbursement is often tied to the ability to demonstrate measurable change within the individual. As my colleague Anne Basting and I have explored elsewhere, this is problematic for many reasons. While standardized instruments and study designs (e.g., randomized controlled trials) may be effective in measuring responses to medications or targeted therapies, they are not well suited to measure subjective experience. After all, how would one measure a “good day?” By the lack of “problematic” behaviors over a two-week period? By staffs’ perceptions of whether a person seemed less anxious or more agreeable to care in the last month?
Second, there is a well-meaning but also potentially problematic focus on the person living with dementia. More specifically, in recent years, person-centered care (PCC) approaches have acknowledged that more attention must be paid to the individual to include preferences and details from his/her biographical past that might help guide current care practices. Clearly this began as a way to shift thinking about care goals for people with dementia, from a state of being “all right” to “better than alright.” Yet, many PCC approaches do not consider the person within his/her social world. Instead, multidisciplinary teams may work together to find the best care plan for Person A, but may give little consideration to Person A’s relationship to Persons B, C, and D; Person A’s view of him/herself in the present; or his/her goals for the future to include opportunities for new friendships and meaningful engagement. Such things are difficult to measure and therefore do not get the same level of attention and support as efforts focused on the individual alone. Such directed care, regardless of how well intentioned it might be, may actually limit personhood.
By focusing so much on that which can be measured (e.g., cognitive performance, behavioral outcomes), we are likely limiting the potential of people with dementia to what can be “proven”. Leaving out essential parts of the human experience that people of other ages and health conditions experience such as social connectivity, opportunities for personal expression regardless of whether such experiences can produce measurable change on an assessment. After all, most people, if faced with a progressive chronic disease for which there was yet no cure, would rather have at least 10 good minutes in a day or week in which they could momentarily transcend their condition, as opposed to just being “all right”. Such a shift – from being “all right” to “better than all right” may also help with rethinking funding mechanisms by placing value on experience rather than on measuring one’s ability to “not being a problem, a burden.”
For more information about this line of research see:
- Swinnen A, de Medeiros K. (2017). “Play” and people living with dementia: A humanities-based inquiry of TimeSlips and the Alzheimer’s Poetry Project. The Gerontologist: 00(00): 1-9. Advanced access publication available online on January 18, 2017. DOI: 10.1093/geront/gnw196.
- de Medeiros K, Basting A. (2014). “Shall I compare thee to a dose of donepezil?”: An overview of intervention research in dementia care. The Gerontologist.54(3): 344-353. DOI: 10.1093/geront/gnt055.
- de Medeiros K, Saunders P, Doyle P, A Mosby, K Van Haitsma. (2012). Friendship among people with dementia in long term care. 11(3): 363-382.
What a beautiful text. Thanks, Kate. I would add that the opposite might also be true: by so much looking almost exclusively at “more than ok”, on the expression of personhood etc., the dark or ‘dirty’ side of dementia drifts into the shadow. Maybe – using the old term of construction – dementia sometimes needs to be reconstructed, since deconstruction is forgetting about the non-reactive, unresponsive person with a dementia. Just a thought…
Thoughtful and stimulating
good to read this just before taking a friend with
dementia to The Magic Flute. How will she
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