Lately the terminology around dementia has been a hot topic, for example, whether or not someone can be called a dementia “sufferer” or can be said to be “suffering from dementia.” At first I was happy that the Alzheimer Society in the UK officially struck “sufferer” from its vocabulary. What I think few people expected, myself included, was the backlash from people with dementia who said, “I AM suffering from dementia. Who are you to tell me I’m not?” They have a point. Quite frankly, whatever terminology you choose to describe yourself and your experience is fine, as long as it comes from you and not someone else. No one has the right to label another person as a “sufferer,” or anything else for that matter, but no one has the right to tell another person they are NOT suffering either.
Along those lines, when people say they are “living well with dementia,” I’m not going to quibble; it’s up to the individual as to whether they are living “well” or “not well.” But I have an issue with organizations using the terminology “living well with dementia” or telling people they can “live well with dementia.” While many people say they live well with dementia, there is also a sizeable number who say, “I am NOT living well with dementia. In fact, life s**cks!” Telling them they can and should live “well” sets an expectation that some feel pressured to live up to–and when they don’t, some feel like failures.
What does “living well with dementia” mean anyhow?
A person diagnosed with dementia is in fact “living” with dementia. The mere fact that a person is still breathing the day after diagnosis indicates that he or she–now a “person with dementia”–is indeed “living.” At issue is the word “well.” “Well” is subjective, meaning (according to Miriam Webster) that it is “relating to the way a person experiences things in his or her own mind; based on feelings or opinions rather than facts.”
Who is to say that one person is living more “well” than another? There are measures of well-being and ways to develop a “well-being” profile of a person with dementia, such as this tool developed by The Bradford Dementia Group in the UK. The report references Thomas Kitwood’s “underpinnings of well-being” and the “psychological needs of people with dementia,” which provide a sort of measure.
But really, doesn’t Maslow’s Hierarchy of Needs apply the same to people after diagnosis as it did before? Don’t people with dementia have the need to self-actualize? Does this need stop after diagnosis, even though it was present the second before diagnosis?
Currently, there is a movement towards seeing the rights of people with dementia within the framework of the social model of disability. I’m only halfway through reading the report by The Mental Health Foundation in the UK, Dementia, rights, and the social model of disability: A new direction for policy and practice?. I can already see that the social model of disability provides us with the language and framework to talk about what it means to live with dementia, and I consider this report essential reading for anyone whose work impacts the quality of life of a person with dementia in any way. If you do nothing else, take a look at page 19 of this report, which compares the medical and social models of dementia, and then think about what model YOU are using in your work and how that influences your work with people with dementia.
Kudos also to Dementia Alliance International, which is doing some excellent work bringing the human rights of people with dementia to the international stage.
So what terminology should one use? I’ve heard “live fully” with dementia and while I like it personally, “fully” is also hard to quantify. How do we know when someone is living “fully” with dementia? Living “fully” means to the best of one’s abilities or capacities, but what might be a “full” life to one person is not “full” to another. Then there is living “better,” but better than what? I’m sure there are volumes to be read that provide the reasoning for using any of these terms, including “well,” but most people do not read the arguments for and against, and are left simply with whatever they take away from “living well/fully/better with dementia” in a similar manner to which person-centered care has largely lost its original meaning.
I think the point to drive home, and that is missed in our over-medicalized system of dealing with dementia, is that life goes on after diagnosis. As I said previously, the fact that a newly diagnosed person is breathing the morning after means he or she is living. So yes, not only is “living with dementia” possible, but there are 44 million people worldwide doing so.
I think we simply say that a person is “living with dementia”–not, well, better or fully, but simply living–recognizing that living will go on for 5, 10 or 20 years. Life continues…
And then we ask him or her a question, preferably right after diagnosis: What do you want your life to look like?
It’s the same question we would ask anyone who is alive, and the person with dementia has the same right as anyone else to define what he or she wants life to look like, and the right to be supported in achieving that life. And that’s it, plain and simple.