Most of what I learned from Leslie, her caregivers and Lisa resulted from “experiments” they conducted. The experiments were small, and not very fancy or systematic, but they were useful–in many cases, necessary. I followed their lead and conducted experiments of my own, lots and lots of them. Without these experiments, none of us could determine, from one moment to the next, what care activities might be more beneficial or engaging for Leslie and other memory care residents than doing nothing.
My experiments and those of more expert care-givers were pursued within a continuing stream of “trial and error” episodes. Some of these lasted less than a minute or two. That was the case for figuring out how to adjust Leslie’s posture so she would be more comfortable in her wheel chair, or determining if she wanted to feed herself or have someone help her. Other episodes of trial and error might last a few days to a week or more–adjusting Leslie’s nap time in hopes of improving how well she slept at night, for example, or trying to find something she could hold in her hand so she wouldn’t rub her thumb raw. Some episodes, like exploring different strategies for releasing the tension in her right ankle, or for unfolding her clenched fists, lasted weeks or even months.
These trial and error episodes were frequently informative, but never definitive. They might confirm a desired outcome, but fall short of revealing how it could be achieved consistently. Even when a new approach worked, its effectiveness was provisional and subject to refinement–or even radical change–through continuing episodes of trial and error.
Scientific communities champion experimental formats that are much more rigorous than this kind of improvised trial and error. The more formal approaches they cherish rely on controlled situations, treatments and variables to test broad theories or confirm the effectiveness of specific practices or strategies. However, neither the formats nor goals of experimental science are well suited to assessing what works or doesn’t, moment-by-moment, in caring for an someone who’s living with Alzheimer’s or dementia.
This doesn’t mean that good, empirical evidence has no value in designing or providing care for people who live with Alzheimer’s or dementia. It most certainly does! However, degenerative diseases take people who are living with them through continuous streams of change and accommodation. Within those streams, trial and error frequently offers the best chance of getting empirical evidence. In that respect, trial and error may be the one approach to Alzheimer’s care that is universally effective!
The following posts examine or illustrate how trial and error experimentation can be useful in developing care strategies and supporting relationships with people who live with Alzheimer’s or other forms of dementia.