Why don’t we talk about Dementia?
Being West Indian and living and working in the UK has given me the perspective to see commonalities and differences between cultures. One of the things I have noticed across my personal and professional lives is the tendency among people- particularly of minority ethnic backgrounds- to talk about Dementia without really talking about it.
They might say things like: “Well we know what’s really going on” or “Mum isn’t as sharp as she used to be but there’s no point bringing it up.”
There is certainly no benefit causing someone undue distress by repeatedly mentioning memory issues they might be experiencing but I often don’t think people realise the potential disservice they are doing themselves and their loved one by not acknowledging the elephant in the room. While we are unable to cure Dementia at present, a diagnosis might open up access to a range of supportive services and medications to manage symptoms. A Dementia diagnosis also empowers those related to the person affected to consider and manage their own risk.
I have a few theories about why we don’t talk about Dementia in minority ethnic communities:
Mentioning that the person’s memory isn’t as good as it used to be could be taken as an implication that they are not very intelligent which could cause offence
That person may hold a patriarchal/matriarchal role within the family and suggesting that they have a memory problem may make them feel like this position is being challenged by somebody much younger than them
Religious/socio-cultural attitudes that older people are to be respected and revered no matter the circumstance may lead to other family members feeling intimidated or that they are in the wrong for bringing up such an issue
There are many other potential and overlapping factors to consider. This is an understudied area as minority ethnic groups are often under-represented in research around attitudes to Dementia- I believe, in part, simply because they do not want to talk about it. We need to prioritise studying this problem if we are going to change attitudes to early dementia diagnosis, treatment and prevention.