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.
Allen Power's Blog 
We have to give Beatitudes credit, they’re doing more than most! I agree with taking the time to ferret out the reason the person is distressed enough to go find something, and it won’t be until we have trained out our willingness to place everyone with a disability in the “worst case” category. As we all know, people have good days and bad days. The bad days usually have a reason, such as stress, lack of sleep, or someone isn’t visiting as often.
I think your “journal of what is happening in the resident’s life,” and finding the root of the resident’s distress is something every staff member should learn to do. The consistent staffing should also be sought to get the instinctive in place.
How does one go about achieving consistent staffing? It seems to me one might still have 8 to 10 different care partners, even if they are mostly on the same shift?
I have thought that a “foster family” type schedule would be effective. I’m still playing with that idea.
Congratulations on winning that recognition for 2010 book of the year! It’s well deserved.
Good comments as usual Karen, and I do think the Beatitudes is doing great work.
The issue of consistent staffing is tough, but certainly achievable with a strong leadership commitment. Th first step is to move from using contracted staff to a permanent workforce, then help people see the value of staying with one group of elders and developing close relationships.
Smaller environments help to facilitate knowing as well. If 40 people share one living area, there develops a concomitant mindset of “efficiency” that staff are forced to adopt in order to make such a large “unit” functional. This makes the concept of non-rotating staff even tougher to sell. Smaller environments like the Green House or small households start with the principle of facilitating knowing, and create a structure that makes the transition smoother.
Staff who have moved to consistent assignments are largely more satisfied, have less conflict with elders and families, and are more attuned to the elders’ needs. Using staff from organizations that have achieved success for peer-to-peer discussion of this philosophy is often effective with staff who are resistant.
To get at the moral aspect, I usually ask staff these questions: How often do you change doctors? Hairdressers? Others from who you receive any services? How would you like to have them changed every few months without having any choice or control over the situation? Now think about bathing: How many of you would feel comfortable having one of your co-workers bathe you? And once you got over your embarrassment, how would it feel to have that person change every few months, doing such personal care to you?
We tend to see hands-on care as a task and often lose sight of just how personal and powerful it is for the person receiving the care. Rotating staff diminishes the importance and sacredness of that work.
Thanks for that response. I like the approach of the moral aspect, asking people to double check their own reactions when it comes to personal care.
So, in this model, when one staff member is on vacation, is it another familiar staff member stepping in to provide the personal care the resident needs (as in an evening staff taking over the morning staff’s bath duties)?
How many staff is a resident able to adapt to? Are we limited to the eight to ten people who would be dealing with all the shifts in a Green House or “household” setting? While staff may be more content with this type of scheduling, don’t we still have to manage with those who are sick or those who are on vacation?
Hello Al,
Here is a tribute to you and all your wonderful work:
http://minddeep.blogspot.com/2011/01/watching-our-words.html
Actually inspired by same New York Time article cited in your post above.
marguerite
Regarding staffing in the real world, it’s never possible for any care partner to be available 24/7 for any intimate care needs that may arise, especially where continence and bathroom dependence become manifest.
Having said that, it is possible to have a primary care partner and a SMALL network of close associates who also have a good knowledge of the elder (and vice versa). If a person bathes a couiple of times a week, most of those can be scheduled at times when the most familiar care partner is available.
In the Green House, there are ideally only about 10 Shahbazim (care partners) staffing a given house to cover all shifts, vacations etc. Some organizations float staff to cover absences, but that is not ideal and does not meet the needs of relationship-based care. In such an environment, it is possible for all the usual staff to have a working familiarity with the 10 elders in the house, and most elders can get to know them to some extent. Once again, I would recommend a primary and a few secondary people to provide most of the personal care, to maximize familiarity, trust and dignity.