No Control Freaks Allowed: Embracing the Complexity of Dementia Support

September 21, 2018
Jennifer Carson and Pat Sprigg

Guest bloggers Jennifer Carson and Pat Sprigg reflect on how to navigate life, we must embrace its complexity. Dementia support is no different.  This blog was originally posted in ChangingAging.org.

Some of the most important and sacred experiences in life are complex, such as nurturing a marriage, raising a child and caring for someone as they die. There is no simple formula, no blueprint for success, and no expert who can parachute into your life and tell you exactly how to make it all work, although some try. No matter how much we wish for simple answers, life does not work that way. In order to navigate life, we must embrace its complexity. Dementia support is no different.

Together, we (Jennifer and Pat) have spent more than six decades supporting individuals living with dementia. We have explored different models and approaches and implemented one program after another. We have read books, tried quick fixes and employed evidence-based practice protocols. We have hired experts and attended countless trainings. All of this has brought us to one clear conclusion: dementia support is complex. That’s right. There is no one-size-fits-all solution, and while expertise is helpful, rigid protocols, even when they are evidence-based, have limited application and can even be damaging when mechanically applied without regard for each individual’s or organization’s uniqueness. Sadly, however, the field of dementia support is dominated by such logic. We get it – been there, done that, got the t-shirt. But today, we embrace dementia support for what it really is: a complex lifeworld. Further, we believe that when dementia support is treated as a simple issue with a quick fix or as a complicated issue in need of expert directives or rigid protocols, the result is harmful, if not inhumane.

Getting to Maybe: How the World is Changed, by Frances Westley, Brenda Zimmerman and Michael Quinn Patton (2007), helps readers view the world through the lens of complexity science and shift from seeing complexity as an obstacle to harnessing its possibilities. The authors’ delineation of simple, complicated and complex issues helps clarify our thinking about dementia support. Table 1, adapted here to explore dementia support as a complex issue, illustrates how different types of issues call for different solutions.

Table 1. Simple, Complicated and Complex Issues (adapted from Westley, Zimmerman & Patton, 2007, p. 9)

SIMPLE COMPLICATED COMPLEX
Baking a Cake Sending a Rocket to the Moon Supporting a Person Living with Dementia
The recipe is essential Rigid protocols or formulas are needed Recipes and rigid protocols have a limited application or are counter-productive
Recipes are tested to assure easy application Sending one rocket increases the likelihood that the next will also be a success What serves to support one person’s well-being does not guarantee success with another person
No particular expertise is required, but experience increases success rate High levels of expertise and training in a variety of fields are necessary for success Expertise helps but only when balanced with presence and responsiveness to each person
A good recipe produces nearly the same cake every time Key elements of each rocket MUST be identical to succeed Every person is unique and must be understood as an individual
The best recipe gives good results every time There is a high degree of certainty of outcome Uncertainty of outcome remains
A good recipe notes the quantity and nature of the ‘parts’ needed and specifies the order in which to combine them, but there is room for experimentation Success depends on a blueprint that directs both the development of separate parts and specifies the exact relationship in which to assemble them Can’t separate the parts from the whole; essence exists in the relationship between different people, different experiences, different moments in time

Dementia support is clearly a complex issue, but the field keeps applying simple or complicated solutions. A locked, segregated memory care unit is a simple solution and also unjust. The implementation of rigid, evidence-based practice protocols is a complicated solution and seldom person-centered. According to Westley, Zimmerman, and Patton (2007), “disasters can occur when complex issues are managed or measured as if they are complicated or even simple” (p. 10). Yes, DISASTERS – a word that we believe describes the current experience of dementia support for many people. While locked doors, segregated living and the latest and greatest interventions may comfort some professional and family care partners, people living with dementia, in general, do not like to be on the receiving end of these so-called solutions. Perhaps this is why people fear dementia more than death itself. It is not so much the memory loss, but the horror of an impersonal, mechanistic and custodial life that relegates people living with dementia to the bottom rung of autonomy – a shift in status from human being and citizen to ward and patient.

2 Comments. Leave new

So, Jennifer and Pat – at the recent Pioneer Network Conference in Denver I was really motivated by the Montessori process of, not only learning, but of meaningful activities and value added living. One on one relationships are the best manner, in our “industry”, to have residents benefit. As we struggle forward we cannot allow ourselves or initiatives to be minimized or limited. We only need look at and understand who we are learning with. Our residents have so much to offer each other and they take us along on their journey

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Amen!!! I brought my mother home from a nursing home for the last year and a half of her life because she was so miserable. In the depths of her dementia, she regained her joy and spread it far beyond the walls of our home. I was exhausted but exhilarated when it was done. In the last week of her life, she kept repeating, “I love you, I love you, I love you.” My spirit was profoundly touched.

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