Living Well with Dementia: What It Means, and What It Doesn’t Mean

by, Dr. Al Power, ChangingAging Contributor

I have had some interesting experiences in my years speaking about Alzheimer’s and other forms of cognitive change. One thing that has surprised me is that the articles written about me—or those that quote me—can generate a very strong and negative response from some readers. Some become quite angry or even offended when I suggest that the tragedy dialogue around dementia can be harmful.

I think I can understand this. I think many people feel that when I say it is possible to live well with dementia, I am somehow dismissing the very real struggles and challenges they face in caring for a loved one. Or that I am saying that if their loved one suffered at all, it’s because they did not do a good enough job of caring. Most of these people have never actually heard me speak in detail or read my books, and it’s understandable that reading “sound bites” could lead to these feelings.

My colleagues who joined me in criticizing the tone of the recent PBS documentary, Every Minute Counts have no doubt experienced a similar reaction. So for my part, I’d like to expand a bit on my thoughts, in an attempt to set the record straight about my feelings, my objections, and my appreciation of the nuances of caring for another person. And since sound bites are so easily misconstrued, this will need to be rather wordy.

First of all, I believe that the two most complex things in the known universe are the human brain and human relationships. When a person faces a diagnosis of dementia, she and her loved ones are thrown into these two most complex worlds like never before. It is very hard to navigate, and it can create a great deal of stress, anger, and sorrow. I would never try to deny that people experience this with Alzheimer’s every day. Nor do I think that we are fundamentally uncaring or incapable as carers if our loved ones suffer.

What I am trying to say is that our predominant view of dementia puts those caring people in a system that is stacked against them—a non-level playing field, if you will. My primary message is: This is not about bad people, but rather inadequate systems—systems of thought and systems of care—that prevent us from achieving all that we had hoped.

While it is impossible to put all of these aspects into a brief post, I will list four examples of how the predominant view of dementia actually makes our jobs as care partners much harder and—as I said in a recent comment—can actually lead to more suffering for those living with the diagnosis.

1. Stigma. The language we use and the ways in which we portray people—”The Long Goodbye,” “fading away,” or as the program stated, an “empty shell” serve to dehumanize the person in the eyes of society. Researcher Susan Behuniak describes the media view as ranging from “piteous to repulsive.” She mentioned the common view of the person as being just like a “zombie,” and added that this dehumanizing view of people not only robs them of death with dignity but also a life with dignity. This also leads to social isolation, which further increases your burden as a care partner.Another consequence of this view is that the person is immediately seen as incapable and becomes disempowered from Day 1. There are highly touted education programs that tell people, “Your loved one will slowly disappear” and “They are incapable and you must take over everything.” Even the name “caregiver” suggests that it’s a one-way street—you must do it all, and they can offer nothing in return. So the carer is told to take on an inordinate burden from the very start.The person with dementia, who is already struggling to navigate her own grief with the diagnosis, now lives in a world where she too often has no opportunity to give an opinion or make any decisions about her life. And it happens as soon as the label is applied, no matter how well preserved one’s capabilities may be. People with dementia tell countless stories of this happening to them in everyday life, from family members and professionals alike. This is a major, reversible cause of suffering.
2. The Wrong Education. As implied above, much of what we are taught about caring for people living with dementia does not give us the insights to find durable solutions and can actually make things worse. Let me share a story that illustrates this:Yesterday, I had the opportunity to help a family member change a flat tire. I know from years of experience that the lug nuts on the flat tire are very sticky and hard to loosen; therefore, you must loosen them before you jack up the car, or else the tire will just spin around when you pull on the wrench, and you will get nowhere.Most people know that; but suppose you had been taught in your driving education that you must begin by jacking up the car. You would be constantly frustrated and angry by a technique that wasn’t working, and you would conclude that changing tires is always a miserable experience, doomed to failure. And if someone came along and said it didn’t have to be miserable, you might think they were delusional.You might figure out the better approach through trial and error; but if the authorities constantly told you that, no, you must always jack up the car first, it would leave you lost and failing repeatedly. This is obviously an oversimplification, but is used to illustrate the point that much of our available education is inadequate, or simply wrong. Not your fault when things don’t get better; you were given a broken playbook.

   One of my greatest epiphanies—and sources of embarrassment—is the knowledge that can be gained by listening to the wisdom of people living with dementia. This began with meeting people like the late Dr. Richard Taylor, who traveled and spoke quite eloquently; but those insights also helped me to find important clues to understanding those who could not speak well, or at all. And it’s embarrassing to think of all my years as a doctor when I discounted people as being confused or even delusional, because I did not understand how they were expressing themselves.

   This is why I talk about care partners. Even if people are at a stage where they can do very little for themselves, they almost always can express choice through their words or actions. When these are dismissed as “behavior problems,” we miss these clues and also deprive the person of one of the most basic human rights: the right to be heard and understood.

   So part of care partnering is understanding that people with all levels of ability can teach us volumes about how to care for and support them. We must become the students in order to fully succeed.

   This lack of the right education is complicated by our…

3. Biomedical focus. Our intense focus on brain disease leads us to ignore the experience of the person who lives with the diagnosis. Everything becomes a symptom of disease. When we don’t understand how to support the person whose worldview is shifting, and our professionals tell us that the difficulty they experience is a “behavior problem” and a “symptom of dementia,” we use dangerous and sedating medications, instead of learning how we can shift to accommodate their worldview (just as we have learned to build ramps for people in wheelchairs, instead of forcing them to walk up steps as we do).My work has shown that the majority of episodes of distress that we see are not the direct result of the brain damage (which may enable their distress, but is not the root cause). Usually, the root cause is a loss of various aspects of well-being (such as a sense of autonomy, meaning, or security). There has never been an educational course that teaches us how to recognize and respond to threats to well-being—only how to “manage one’s behavior,” which means either to medicate the person, and/or respond with an array of “interventions” that distract, but do not fulfill the underlying needs, so the distress occurs over and over.When I teach a proactive well-being approach, care partners often find solutions to distress that they had never found before—I have heard of seemingly miraculous transformations in people with whom they had struggled for months, even years. These care partners aren’t bad or ignorant people—they have just been taught the wrong approaches—in essence they were put on the non-level playing field.Family members (and professionals who have cared for loved ones) often say to me, “I so wish I had known this 5 years ago,” or “…back when my Mom was alive.” We have all followed this path to greater knowledge, and we have all made many mistakes along the way, none more than I. I began my first book, Dementia Beyond Drugs, with a story of one of my greatest failures. And I finished the story with Maya Angelou’s quote, “You did then what you knew how to do; and when you knew better, you did better.”
4. Misplaced priorities. This is the last aspect I will discuss here, but it’s a huge one. There is a desperate need for more than just better education. Family members and professionals alike need a much better infrastructure for care, as the documentary correctly pointed out: better home care services, respite, enabling technology, community redesign, transportation, better long-term care options, and community awareness and capacity immediately come to mind. Another important need that was not fully addressed is the need to provide “habilitative” therapy and purposeful engagement, in order to forestall loss of ability and faster decline.Unfortunately, as the documentary echoed, our solution always comes down to, “Give us more money to find a cure.” This is problematic for two reasons.First, dementia is intricately tied to our long lives and to the aging process. Of course, younger people are diagnosed as well, but most people do not have a strong genetic link and many of the younger people likely represent the end of a bell curve or an earlier diagnosis, rather than a distinct illness.As a geriatrician, I know that we can’t cure aging and mortality, and it follows that there will never come a time when many aging people do not experience changes in their cognitive abilities. To think we can eradicate Alzheimer’s like smallpox is as much a fantasy as curing mortality. We can and should do research to find better treatments to delay the onset or progression of the illness; but the inordinate focus on The Cure creates false hope and produces a subtle, but very real societal intolerance for those who can’t be cured.

   The second result of focusing excessively on The Cure is that all of the other needs I outlined above are given much less attention and far fewer resources than the drug companies. So we, as care partners, are too often left to fend for ourselves without those other areas being adequately addressed. Most countries have rebalanced their priorities to elevate these needs alongside drug research—the US has not. So here we are again on the non-level playing field, with our day-to-day needs being unfulfilled while the promise of The Cure is touted over and over.

So to summarize this lengthy post: Yes, I feel your pain; I see your struggles. They are very real. My message is that you have been let down by our system and our model of viewing dementia, and that it can be much better if we are open to challenging the status quo and working proactively to improve the well-being of those we support, and our own as well.

This is not just theory. Many colleagues and I can share countless stories of people who have made a better life for themselves and their loved ones by rejecting a narrative of pure loss and tragedy and discovering a new path. It won’t be easy. It won’t be without sorrow and grief. But you will find the gifts and solutions hidden among the challenges, and each person’s life with dementia will take on a level of meaning and value that our current view does not permit.

I wish you all the best of luck in the important work you do.