What Lies Beneath

Working in the world of elder care services, we know that dementia, of all types, is a reality in the lives of many older adults. More than 47 million people worldwide live with dementia, experts telling us that the large numbers are due, in part, to both the increased size of the population and the fact that people are living longer. Whatever the cause, the Alzheimer’s Association estimates that more than 50% of individuals living in either assisted living or nursing homes have some form of dementia or cognitive impairment.

My visual image of dementia is as a thief or maybe a cat burglar. For the most part, it seems to creep into people’s lives and robs them of so much, stealthily but effectively. It is heart-rending on a lot of levels. The individual is aware of what is taking place and unable to stop the course of the disease. The family watches their loved one change and seem to disappear. While there is some progress in medication to slow the process, nothing has yet been developed to stop or reverse this theft, both of their being and of their life.

I am, by no means, an expert on dementia. I have spent a lot of years working with individuals who have that diagnosis but I am not, nor do I claim to be, a clinical expert. I’ve watched the finest physicians, nurses and other healthcare professionals care for these individuals and what I mostly have are questions.

My questions focus on what we know and don’t know, about how we interact with those with this diagnosis and how we care for them. We assume that the person living with dementia has diminished capacity because they may struggle to communicate. But no one truly knows what is still there, what is trapped inside. How do we know that someone with dementia doesn’t have more understanding than they can express? How do we know what is still there, perhaps has always been there?

With the best of intentions, we often assume that the person living with dementia cannot understand and they become cut off, with conversations happening around them but not with them. They become de-personalized, a diagnosis but not an individual living with that diagnosis. With the best of intentions, we use medication not to heal (as there is no healing) but to control, to control how the individual behaves or functions. Do we do that because it is best for the person or because it is easiest for us? I think, in truth, it is because we just don’t know what else to do.
Yet there are voices beginning to be heard, beginning to be raised, that challenge us to look at dementia differently. G. Allen Power, MD, in his book “Dementia Beyond Disease” argues convincingly that we must focus on “enhancing well-being” rather than controlling behavior or controlling what we perceive as “distress.” He makes a strong case that we must listen to the voices of those with dementia, to end the de-humanization that this diagnosis seems to provoke in others.

As for me, I think the core is to remember—and remind others—of what we do not know as well as what we do know. We don’t know what is taking place within the mind of the individual with dementia, just as we don’t know what is going on in anyone else’s mind except our own. We do know that people living with dementia are people with a disease. They are not, and cannot, be defined by their diagnosis. They are entitled to be treated as adults with choices, needs and preferences. It is time for all of us to take our attitudes about dementia out of the darkness and into the light, to see, indeed, the person and not just their diagnosis.