Thanks to Helen for posting further questions about yesterday’s installment. She has had several frustrating experiences with people living with dementia, which lead her to wonder if they are truly teaching us. Please read her comment, as this is a challenging area and I’ll refer to a couple of specifics she has mentioned.
First off, a general question for all: Have you ever had a teacher, or maybe a college professor who really challenged you? Who pushed you farther and harder than you wanted to be pushed? Who truly infuriated you at times with his/her demands? And who left you better off for it at the end? Let’s try that image and work with it a bit…
Here’s the basic tenet of my model for care: I define dementia simply as “a shift in the way a person experiences the world around them”. In its simplest form, that’s what it is. And since each of us lives a similar version of that shift as we move through the decades, we can begin to relate to that idea.
Unfortunately, people living with dementia exist in living environments that are still constructed around the needs and outlook of the people without dementia who provide the care. When you live in a world where you cannot successfully navigate, that erodes well-being and causes distress. It’s like asking a man whose legs are paralyzed to walk up a flight of stairs, like we do. Instead we build ramps for people in wheelchairs, to enable them to succeed. Can we do that for dementia as well?
We build disability access by putting ourselves in the shoes (or chair) of the man who cannot walk and discovering what he needs to succeed. So my “experiential” model asks us to do the same for each person with dementia, as he or she experiences their brain changes in a unique way. When we do, we discover clues to their unmet needs and can create an environment that better answers those needs. They become happier and we become smarter.
The woman looking for her “babies” is teaching us several things that can help us relate to her. First off, she is showing us that crowded multi-bed wards are raucous, disturbing places where it is nearly impossible to find moments of peace, privacy or dignity. Any of us would feel that way, but people with dementia are the first to “announce” to us–through their distress– that this is the case. Yet we continue to build these insane wards. Why? Because it’s “cost-effective”. We don’t learn the lessons from the folks with dementia because we feel they can’t teach us anything — they are simply “confused”.
Lesson #2: One of the most deeply ingrained human needs is the need to care for another. But we don’t see people with dementia as being capable of caring for others, so we put them (and all frail elders) into environments where we provide all the care and make all the decisions, and they lose these important opportunities. And what happens when you no longer can give care, have control or serve a useful purpose? You want to die. That’s why people say they would rather die than go to a nursing home.
So what to do? First of all, acknowledge her need to care for another and let her have her “babies”, in whatever form they sustain and feed her soul. Invite her to make decisions about day-to-day life and care. With enlightened facilitation, even people with severe dementia can usually make decisions on some level, and still feel part of the world as a result. And amazingly, restoring these opportunities to give care and have choices often makes the agitation disappear.
There is also much to be learned about how to approach and converse with a person in distress. Helen’s mother, through no fault of her own, made a comment which did not support the other woman’s world-view and increased her distress. But there are approaches that can work well with a person such as this, and can leave her smiling and fulfilled. Many of us have learned this by trial and error, and we learn best when our “teachers” show us what approaches work for them and which ones do not.
Finally there’s a lesson in being present in the moment. People living with dementia are very good at this, because they have slipped the bonds of linear time and become unlinked to the past and future more than we. The best way to meet someone with dementia is by staying very much in the present. This is not easy for us to do. We are always thinking about what else we have to do later on, how many tasks we still haven’t completed, or some future conversation we need to have.
But a person with dementia isn’t chained to all those thoughts. And if we can’t unchain ourselves, our distractedness is very obvious to that person and so we never connect in a way that will meet her emotional needs. So we can learn a lot about mindfulness by watching people with dementia and engaging them in their own present moment, and in doing so, they teach us their world-view and we make powerful connections.
Does all this have real-life significance? Absolutely. Care partners who are able to connect in these ways not only create environments where people are more relaxed, engaged and happier, but we often see what looks like reversal of their dementia, as people who had been withdrawn start to find their footing again in a more positive, enabling environment.
As I write these words, I sit at the house of Judy Berry, whose Lakeview Ranch homes have welcomed people who were unable to be cared for in other nursing homes and are re-engaging them without using medication. Judy recently won a Robert Wood Johnson Foundation award for improving community health through these homes.
My last comment is that people with dementia continue to need the same things that make our own lives worthwhile. They still need identity, autonomy, meaning, security, connectedness, growth and joy woven into everyday life. One of the biggest mistakes we make is that we assume that when certain faculties are damaged, those attributes of well-being are no longer important to the person. Then, when people suffer for the lack of these things, we just call it “disease-related” suffering and convince ourselves we were right to institutionalize their lives.
It is very hard work to create paradigm shifts, as Helen mentioned. The best we can do, and what we must do, is intervene one moment at a time, one person, one interaction at a time, creating small shifts that will transform individual lives. It’s like the story of the little girl throwing starfish back into the ocean that had been stranded by a high tide and were dying. There were thousands all along the beach. A man passing by said, “Look at all the starfish – they must stretch for miles! How can a little girl like you possibly make a difference?”
The girl picked up a starfish, set it into the water and said, “I did for that one.”