My mother once told me in a hushed voice that one of our neighbours might have TB. My mother-in-law spoke behind her hand of epilepsy (“E-P” she called it). Then, it was considered poor practice to tell people they had cancer (they gave up hope) and of course we never mentioned people with that “condition”, homosexuality! Things have changed. So what makes it so hard in the 21st century to talk about dementia?
One problem is that we assume that once the diagnosis is made, then the person will have “an inexorable decline into incompetence” (Devi, 2018). But there are many sorts of dementia and, even for the same type, the progression differs in different people. Alzheimer’s disease for example has several sub-types with various clinical courses. I have always thought that the disease I most want NOT to get is motor neurone disease, but Stephen Hawking proved that despite his terrible prognosis and disability he could still live an astonishingly full, rich life and contribute enormously to the world. It is likely that many people with dementia are in this category, still contributing a great deal. Think of Terry Pratchett who kept writing until the end, or Ronald Reagan who undoubtedly had early Alzheimer’s disease while still President.
Another problem is that we tend to think of the very worst outcome, the last stages of dementia. If we thought about diabetes in this way, it would be so depressing we wouldn’t want to mention it. End stage diabetes is horrible: blindness, gangrene and amputations, renal failure and dialysis. We don’t usually consider the severe cases when we speak about diabetes, but dementia is often considered in terms of hospital care and locked facilities. In fact, about 70% of people with dementia are living at home, in the community and it is generally only those with advanced disease who require residential care. People with dementia often have many good years after diagnosis, and focussing on the last stages gives a very biased idea of what it is like to have dementia. While the end stage of dementia is unpleasant, especially for relatives, it is possible that with good care, suffering is not extreme and hopefully the patient is not very aware. Most people die with dementia, not from it.
But what can we do for dementia? Often people think it’s hopeless. We can cure tuberculosis and control epilepsy (mostly). Many forms of cancer are now treatable and we have decided that homosexuality is not a “condition” at all. In dementia, like diabetes, we have to manage the symptoms and do what we can to slow the progression, to prevent further damage. There is NO PILL for dementia, but there are other things to do. “Cognitive Stimulation Therapy” has been shown to slow progression and in some cases results in improvement. Attention to other factors can also reduce the rate of decline. Are we so captured by drug companies that we don’t consider non-medication treatments?
Expectations of decline, focussing on the worst cases and believing that “nothing can be done” are some of the things that make us overly-afraid of dementia. Add to that the still present fear of mental illness, beliefs that we should be independent, autonomous individuals and the over-valuing of our thinking / cognitive ability at the expense of other aspects of our humanity (like emotions, relationships, spirituality, physicality) and you have a situation where dementia is seen as such a terrible condition, we are afraid to talk about it.
Three ways to reduce stigma are protest, education and contact. When we talk about dementia it might be to protest about a stereotyped, negative comment. Or we might try to teach someone about the variable course of dementia or possible treatments. But contact is best of all. Meeting up with someone living well with dementia blows stigma out of the water; the other person realises they are just like them with a few symptoms. It takes courage to acknowledge you or a family member have a stigmatised condition, but unless we a talk about it, loudly, it will remain in the hushed TB territory of the 1950s.
Devi, G. (2018) Alzheimer’ s Disease in Physicians — Assessing Professional Competence and Tempering Stigma N Engl J Med;378:1073-1075.
Previously published in Mind Matters, Newsletter of Dementia Auckland