I am astonished at the amount of "dementia awareness" we are getting right now. From celebrities baring all about their relatives, to soap plot lines. It affects us emotionally but I wonder how much it helps people to deal with the practicalities? Does it skew our understanding of the problem towards more unusual and difficult symptoms, away from the more common problems for which there are some practical strategies?
Most people fear getting dementia. If they have a memory slip they wonder if that is the start. However, research and experience shows that memory problems are not always the first sign, or the worst problem. The problem early signs of Alzheimer’s or related diseases is that people may ignore or conceal non-memory changes or difficulties at the start. Because we are endlessly told it is a “memory problem", memory signs are what we tend to look out for. This is world wide, with dementia related organisations commonly using the forget-me-not flower as a symbol, or calling their services “memory clinics”. That branding is misleading. “Non-memory” signs and symptoms are common, and frequently cause bigger problems than memory. That’s a surprise to anyone reading about dementia in the popular press.
We keep hearing about new “early signs” of dementia. Why is that? It is because the entire world is longing for a miracle drug that will prevent suffering, save a lot of public and family money, and make a fortune for the manufacturer. But if you want to test a new medication, you need patients before the symptoms develop too far. So the early warning signs are the prize that everyone searches for. That is why some weak evidence about early signs gets covered widely in the media. We want it to be true, even if it is not good science.
Research shows that if you list the problems that bother people affected and their families, memory does not even come in the top six. In reality dementia is caused by brain damage. Changes in your sensory perception, including taste, vision and hearing are all signs of brain damage. It can affect balance and your capacity to speak or to do the things you used to do easily. Those changes cause distress, and a lot of the behaviour symptoms that are the first sign of impending problems are a very personal response to the distress. How you express that depends on your life circumstances, your history and your personality. Anger, anxiety, agitation…anything is possible.
We all need to know the difference between an association and a cause. Dementia is associated with old age, depression, diabetes, high blood pressure, lack of exercise, poor diet, stroke, sleep problems, loneliness, smoking, excess alcohol, Parkinson’s disease, HIV, concussion, lifetime stress, poor educational attainment, being female, mild cognitive impairment, ITU psychosis, Down’s syndrome and many more issues. That does not mean that having any one of these is “an early sign of dementia”. You can’t even say one causes the other. They are just associated. It's very complicated! The advice is just to manage any of those you can.
In the aftermath of the Emerdale dementia story, are we any the wiser?