Here’s a “Blinding Flash of the Obvious,” or “BFO”, as our friend Jane Verity, CEO of Dementia Care Australia would say. On New Year’s Day, the New York Times slipped in an article on new approaches to dementia. My inbox lit up with forwarded copies, and many of us celebrated the recognition of something many of us have been preaching for some time.
The article has its share of language issues, such as referring to people as “difficult” or “acting out”, but it hits on several central tenets of what I have come to call an “experiential” approach to dementia. Here are a few of those ideas alluded to in the article:
* The key to addressing emotional distress is to know the person, to understand his needs as he sees them, and to work creatively to find solutions that fulfill these needs, without judgment. This often requires that we take away our paternalistic view of people with dementia as being incapable, or somewhat less entitled to choices that we all take for granted. People choosing when they get up or go to bed? “Allowing” a 96-year old to eat chocolate?? How did we get to the point where these are startling revelations??? BFO.
* There are many cosmetic and programmatic changes recommended in the article and they all have value. But the gem of the article, in my mind, is the University of Iowa study that showed how durable people’s memories are of positive or negative emotional experiences–even more so than people without dementia–and long after their memory of the details of the experience have faded.
This is important for two reasons. First it shows, as Christine Bryden said in her book Dancing with Dementia, that people who live with dementia make a journey from cognition into emotion (and eventually into spirituality). The emotional content of the moment has extremely powerful effects on a person’s demeanor from moment to moment, day to day.
This leads to the second point: in spite of the value of cosmetic changes, focused activities and programmatic approaches, the real key to well-being lies in the spaces–those individual moments that underlie every interpersonal interaction–not just during bingo, but when greeting someone, giving her a bath or helping with a meal. These interactions leave an indelible impression on a person that will determine how their days (and yours) will play out. As my mother-in-law said to my wife one day, deep into her life with Alzheimer’s, “I don’t know your name, but I know you’re my friend.” One of the best references on these moments is Nancy Pearce’s book, Inside Alzheimer’s which is coming out in a revised edition this year.
* We often fail to take the “unmet needs” concept far enough in daily care. The quoted example of putting a dark carpet square (which looks like a hole) in front of the elevator may solve the short-term issue of a person getting on, but we must not stop there. We need to also ask, “Why does she want to leave? What can we do to make this a place where she feels wanted, a sense of belonging and fulfillment, so that the elevator won’t beckon every time she walks by?”
This article is a great leap forward for media coverage of dementia. 2011 is off to a great start.