Everyone Has a Future

Much of memory care today focuses on just that – a person’s memory, a person’s past. This is right and good - everyone has a past worth honoring and preserving. But when we care for someone living with dementia, we must also honor who they are today and who they are becoming. Anyone that has loved and cared for a person who is living with dementia knows that they may change drastically as the disease impacts memories and personality. We all recognize the inevitability of change in ourselves as we grow older, of course. Who we are today might be close to who we were decades ago, or may be radically different and almost unrecognizable from that older self. With dementia, changes can be much faster and more profound. The husband of today can be very similar to the one of 6 months ago, or almost seem like an entirely different person. In a very real way, then, the past may provide little comfort to a person who is being changed by dementia.

We at Homecoming think a lot about the experience of Dr. Richard Taylor, diagnosed with early onset Alzheimer’s Disease at age 58. In his book, Alzheimer’s from the Inside Out, he writes,

 Frequently, my caregivers acknowledge they don’t understand me…. If only I were different, they could and would be their former selves again. We could all return to the good old days: when we were all more predictable… when we felt we knew each other and ourselves…. Oh, how they want me to be the husband, the dad, the friend I was. I’m not. I can’t. I don’t want to be, because I really can’t go back. In my mind I just want to be myself. (Taylor, 2006, pp 135-136)

I was fortunate to talk to Dr. Taylor after a speech he gave at Johns Hopkins University. He said something that really changed my notions about using the past to stimulate old memories in people living with dementia. He said, “Everybody’s always talking about the past and rubbing your face in it. I don’t need help with figuring out who I was 5 or 10 years ago. I need help figuring out today, right now.”
 We all long for the self that existed before dementia – the person with whom the wife fell in love, the friend who would laugh at your jokes, the dad with whom you went fishing. This present human, with its glimpses of the familiar in a wilderness of unpredictable responses and pursuits, is a human we don’t know as well. We find it hard to speak to this one, to relate to them, and we find it hard, especially hard, to value this present human as much as the past one we knew.

If we are to develop a home where people are valued for who they are as much or more than for who they are, then we must be firmly committed to the notion that this person as they are now has as much value and claim to a full life as the person who they once were. The past can actually be a burden to people like Dr. Taylor if we don’t give them an opportunity to live fully as the person they are becoming. And I believe that this is also one more way we tend to dehumanize people with dementia: if we continually emphasize the past and try to preserve that old self, the less we’re going to value the new self. This leads to seeing people with dementia as simply not having as much worth as the disease progresses. I believe that’s the underlying rationale that allows our society to house people living with dementia in places that act more as holding cells or prisons, serving simply to store people as they live out the last few years of their lives.

Instead of focusing mainly on the past, Homecoming recognizes that each person with dementia not only has a valuable past, but a valuable future. We at Homecoming want to know who our residents were, sure. But what we want to know even more so is: “who are you now? Who are you becoming?” In order to do this, we must change the structure of memory care, the physical layout of secure units. Memory centers are mainly built upon the concept that people living with dementia primarily need a secure place in which to be. We believe that people with dementia deserve spaces in which to live. Much of the dread of dementia has to do with the current layout of most memory centers. If we are to truly bring hope into the lives of millions upon millions of people suffering from dementia, we will design homes that recognize their right to a future.

Memory centers should be built with a passionate conviction that every person in the facility has a future, even if memories and independence have been left in the past. In most memory centers, we have yet to see a person living with dementia who is truly living their best possible life, because we have yet to build places for living, only places for being.

Care environments, if they are to accommodate each person’s future, must be designed in a way that offers opportunities for purposeful activity and for meaningful work. A wide range of opportunities to contribute something of value to the community enables people to explore their future and to manifest who they are as fully as they are able. Spaces for people living with dementia must not only provide opportunities for comfort, creativity and leisure, but they should give older adults the chance to develop new skills and rediscover old. Typical activities programs are generally geared to fill up empty time as well as to promote movement and flexibility, but very little is expected of our elders in terms of doing something purposeful. There’s nothing wrong with bingo and movies, but an activities program that assumes a resident has nothing of value to contribute is yet another way to devalue the person living with dementia. Homecoming is convinced that it’s time to develop vocational rehabilitation programs for people living with dementia. To expect that a person can contribute something of value in their daily life is to recognize value in that person. Imagine the empowerment granted to our elders when they live in a community that not only enables, but expects them to contribute to that community. An ideal memory center would have a vocational rehabilitation specialist to pair the varied opportunities for vocation with each willing elder’s abilities. A kitchen in each home introduces the rhythms surrounding preparing, cooking, eating and cleaning up after each. A market enables residents to shop for the day’s food and supplies, as is done at Hogeweyk Memory Village in The Netherlands. People living with dementia can be caregivers: pets can be introduced, requiring feeding, walking and cleaning after. A barnyard with chickens represents opportunities for feeding, collecting eggs and freshening bedding. Cleaning, folding and vacuuming is another important way to contribute. Why Homecoming is convinced that substantial outdoor space has to be part of any memory care center is in the way it opens up so many further possibilities for vocational rehabilitation. As memory and coordination fade, large amplitude, repetitive movements become easiest to master. These skills can be used outside – raking, sweeping, planting, weeding, harvesting. 

This is what a life lived in dementia looks like for someone who is identified as fully human in the present. This is what a society does for people who are allowed to shed the burden of the past, of this expectation that they must remain the same. When we expect our elders to remain frozen in their past instead of making room for their future, we design our physical layout and activities programs to accommodate stasis. When we no longer expect our elders to be their past selves, but give them the freedom to have a future, our design accommodates growth. An elder that lives in a memory center like this is empowered to continue to develop, to continue to become someone who my be different from the human they were, but is still just as valuable a human as they have always been.

We must be honest, of course. A developing human brain, the source of our growth as humans, is not the same as a brain that is degenerating as a result of progressive dementia. In many people living with dementia, it’s hard to use the term “development” and easier to use the term “degeneration” - that’s what the brain is doing, after all. But the brain is not homogenous and neither is the degeneration that occurs. Destruction of amygdala and hippocampus interfere with the ability to learn new things, but we know that even in the most advanced stages of dementia, the cortex still holds old memories and old abilities. Can that decaying cortex still hold old passions that were never pursued, undiscovered talents that have never been developed? If we treat people as fully human, we have to give them the grace and attention to view them as more than a behavior, just like we have to view them as more than their past. Those uncontrolled impulses and behaviors do not erase the fact that much of the brain remains intact, especially in the early and mid-stages of dementia.

We are all impermanent, with natures that are destined for change and eventual decay. Who we are is no longer who we were. Some of us change a little, some of us change dramatically, but we all recognize the inevitability of leaving at least part of our selves behind and developing new parts of ourselves, year after year. Most of us are allowed to freely explore new passions, pursuits and vocations as we grow, learn and develop. Some of these changes are imposed upon us by time, finances, physical health and mental health, but change is a constant in any living being. Where the current care model of stasis dehumanizes and disempowers, an acceptance of change and impermanence, an accommodation of each person’s future humanizes and empowers older adults. Ultimately, our grip on each person’s past needs to loosen in order to make room for their future, for when we allow room for change, we empower each person to be fully valued as who they were, who they are and who they are becoming.