My approach to dementia care draws from several of the great thinkers of our time, one of whom is Ellen Langer, social psychologist and founder of the Langer Mindfulness Institute at Harvard.
Dr. Langer has been writing about the value of mindfulness for over 35 years. I read her book Mindfulness in the early 1990s. I still have my copy. In it, Dr. Langer points out the tremendous influence context has on our perception of something’s value. She gives the example of heroin, something we consider intrinsically bad, which can be beneficial when used in the context of pain management near death. Heroin is not intrinsically bad or good. It depends on the context in which it is used.
When I began working with people who have dementia, I chose to avoid existing approaches to dementia care because what I had seen done in care facilities was meritless. My goal was to learn directly from my clients about what kind of care and support they needed. Wanting to be mindful, I chose to not be limited or influenced by pre-existing contexts or notions of dementia care.
What my clients taught me was to allow them to use something else that Dr. Langer writes about: mindlessness and automatic thinking. We all know the experience of having repeated a task or activity so frequently and often that we lose consciousness of its steps. When was the last time you had to carefully follow the steps involved in making your morning cup of coffee? The task becomes something we do without thinking—as if unconsciously following a script. Dr. Langer calls this type of mindlessness “automatic behavior.”
Applying Dr. Langer’s premises, I approached even mindlessness itself without context. What I found is that although mindlessness and automatic thinking may not be helpful to those of us with healthy brains, they are essential and irreplaceable tools in dementia.
Being able to perform a task or activity without being conscious of the steps involved is very valuable for the person who is experiencing dementia. As working memory declines (the ability to recall what has just occurred) and memories from the recent past melt away, a person can still use automatic thinking to function in a familiar place. Many of my clients have continued to function safely at home long after they were completely unable to function outside it. When they are performing tasks in an environment that is unchanged, they are successful using automatic behavior and muscle memory—operating mindlessly.
What is the importance of all this? It means that the most detrimental and unkind thing we can do to people who have dementia is to move them. We take away one of the few tools their deteriorating brains can still use.
Even more important, it is economically foolish. Dementia takes away cognitive functioning long before a person’s physical body declines, necessitating long years of costly care. Long-term care in a facility is very expensive. It is bankrupting families and putting a huge strain on Medicare and Medicaid. Enabling people to stay home longer is not only kind, but economically sensible.
In December 2015 I spoke with two faculty researchers from the Langer Mindfulness Institute. Deborah Phillips, Ph.D., in Boston, is currently doing research on the value of mindfulness in chronic illness. Francesco Pagnini, Ph.D., in Milan, Italy, is focused on research in the areas of MCI and dementia. They were intrigued by my proposal that mindlessness is a valuable tool in dementia care.
I started the conversation with Deborah and Francesco. Research follows theory, but it takes time. So let’s make the conversation public. Let’s put mindfulness into practice in dementia care and see if it helps more people than just my clients. If families all across America knew to keep their loved ones in familiar surroundings, they could put off long-term care and avoid its expense. Dementia causes too much emotional pain and too much expense to wait.