One online friend has asked me to explore and write about older people not wanting to accept a diagnosis of dementia, and how they often don’t want to talk about it or involve themselves and their families in this new world. Many older people I know won’t even talk to their doctors about their memory loss or declining cognitive abilities as they are simply not willing to accept it might be dementia. There seems to be an incredible fear of having it. To become labelled ‘demented’ is unpalatable, and I know many couples who have covered or compensated for each other declining abilities for years, refusing to discuss their decline with anyone at all, especially their gp’s.

One dear friend in her 80’s, has probably been having TIA’s for years, and has had an increasing amount of car accidents, but has not once told her doctor about them until the last one. Recently she almost killed herself in an accident on a country road; she wrote off her car, and has no recollection of what happened, so at last her driving has been suspended. She now also displays significant symptoms of dementia, but will not get tested or even tell her gp about them. Older people are probably still very under-educated about dementia, this lack of education being prevalent in the whole community, including in the aged care and service provision sector. They are even more likely to believe it is a mental illness, which is still very unacceptable especially in the older generation. They fear a loss of independence, and their driving license. They surely fear the stigma and isolation that comes with a diagnosis of dementia, which affects a person at any age of a diagnosis.

Accepting the diagnosis of dementia, or wanting to be examined at all, is difficult. Most of the elderly have owned their own homes, been masters of their own lives since their late teens or early 20’s; they have worked, run homes and brought up families, cooked for themselves, driven themselves everywhere, and in essence made their own decisions about their own lives. Why would they suddenly be happy about others making decisions for them, telling them they can’t drive, they have to go and live in a unit within a residential care setting, or worse, live in a single room, amongst a building full of strangers? These possibilities, and many more, must surely be part of the reason people don’t want a diagnosis, or won’t accept one if it is made. The stigma, the isolation, the fear of what is ahead is significant. The loss and grief are debilitating.

The idea of having others make decisions for you is truly devastating. The notion you may not know your partner or children one day is hideous. The sense of a loss of self is heightened by the increasing difficulties caused by the symptoms of dementia. The antagonism and challenges between family members increase as they try to force a loved one to accept a diagnosis of dementia or relinquish things like their driving licenses. It is easy for a family member to say it is ‘in their best interest’, or ‘they are not safe’, or whatever justification they use to enforce changes to a person’s lifestyle. The same goes for the use of restraints, and anyone in the early stages of  dementia will have seen or heard of others being locked up (secure dementia units!!), strapped into their chairs, or drugged, to ‘keep them safe’! There is so much more to think about, so much more to consider but I suspect the fear of a diagnosis of dementia is very much related to the stigma in the community of this terminal disease.