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.
So, what does all this have to do with the Quest Upstream at Carol Woods Retirement Community? Everything. Learn more August 28th in Part 2 of this series.
I have worked in a Health care Facility for the last 18 yrs actually the last 4 in the Transitional Care Rehab unit! It’s been challenging to say the least even with continued education. We learn as we go!
I am currently enrolled in AGNG 320 at the Erikson school of Aging. We were introduced to Dr. Bill Thomas’s blog for an assignment. Since taking AGNG classes I have developed an interest in Dementia. Dementia support is definitely are a complicated issue. I do agree that isolation and a rigid living schedule is what a person diagnosed with dementia needs. As you’ve mentioned every individual is different and the way they choose to respond to dementia is going to be different. Talking to individuals diagnosed with dementia and maybe their loved ones can help individualize treatment. Getting to know individuals and engaging them in cognitive and physical stimulation individualized to them could help. For family members or friends providing caregiving services, caregivers.org provide helpful information support groups and chat rooms.
I am a student at the Erickson School of Aging. As part of the class AGNG320, we were directed to Dr Bill Thomas’ website “Changing Aging.” This particular blog regarding Dementia Support has a similar approach as the experiential model developed by Dr. G. Allen Power. The experiential model and your open-minded approach both agree that dealing with dementia is complex and unique. There are no strict rules to follow for each case. There is no set plan, only a direction that must be flexible and easily adjustable at every turn. The care and attitude should be individualized and customized to the wants and needs of the person and their unique circumstances. More easily said than done as care partners also have their own unique challenges in life. Moreover, as long-term care facilities struggle with rising costs and limited government reimbursements, individualized care for dementia patients will surely be diminished or non-existent. It’s no wonder that people fear dementia more than death itself.
This commentary is so refreshing. I have been a caregiver first to my Mom,who also suffered from mental illness, at home and then in an institution for her last 5 years and then for my husband at home for the last 8+ years. It’s complicated!
I think one of the seemingly inoccuous,yet for her personally diminishing,examples I think of is this. She had English muffins with coffee every day of her life for as long as I can remember. It was a small comfort that started her day and while I somewhat understand the why of how an institution can’t individualize every persons meal plan I also was witness to the profound affect it had on her. It was much much more than English muffins to her. Complicated.