I grew up in London, North London to be precise and have worked across North, East and South London. Oh and I worked in Melbourne, Australia for 5 years. Across all these areas I met people from lots of different communities, cultures and religions. I felt incredibly privileged, and I learnt so much about so many different cultures. For example when I worked in Australia I worked with a Tiananmen Square refugee, a piece of history I knew (ashamedly) little about. I also learnt a lot about how different cultures deal with illness. One example that always springs to mind is the Vietnamese women I met who drank a bottle of bleach. She had schizophrenia. But her family had not allowed her to leave their family home nor use mental health services due to the stigma associated with mental health within their community.
When I returned to UK and started working in South London I was rather overwhelmed by the lack of diversity in the people being diagnosed with dementia. The area I worked in had many African and Afro-Caribbean, Indian, South American and Eastern European communities living there. Yet the majority of people who I saw were white, often fairly middle class people. Dementia doesn’t differentiate between ethnicity, nationality and class. Yet I would meet the odd working class family who would say things like “Oh well, we will just get on with things, we have no time for therapy”. I met a lady who was excluded from her church community as it was felt that her dementia was some kind of comeuppance for her sins. I met families who gave up their jobs and cared for the elderly relatives, because dementia was considered a normal part of aging, thus no need to get support from health professionals.
It makes so much sense that your experiences, beliefs and community can influence the way you manage your health and health professionals. My father grew up in post war east Germany- in Berlin. When he was 14 he ran away from home and was educated in the west, when he was 18 he went back. They wouldn’t let him leave, he couldn’t get a job and he couldn’t study any more. After a few years he tried to escape again, but unsuccessfully. He got put in prison (for treason), and got bought out by a humanitarian lawyer. My dad became a west German citizen, and eventually moved to the UK where he met my mum and had me and my sisters. A few years ago he got his Stazi file. It made for interesting reading.
To put this into context- my dad never trusted health professionals. He rarely sought medical advice. He absconded or self-discharged every hospital admission he ever had. He got multiple opinions from English and German doctors when he was ever diagnosed with anything, and then he often didn’t follow their recommendations. Not that long ago he described a hospital he had an operation in as an antiquated Stazi like regime. My dad never had dementia. But given his experiences, I completely understand why it might be difficult for people to use the National Health Service. I feel quite lucky to have this perspective. To understand why getting a diagnosis, trusting a diagnosis, taking advice from professionals may be difficult for people.
I feel it should be part of our role as health professionals, as dementia ambassadors to take this on board. To allow people the freedom of choice to take up advice or not. But to provide an environment that is safe and open, that doesn’t feel like a Stazi regime. Where people can get appropriate support for themselves, their families and their communities. Perhaps we need to rethink the way we deliver dementia services. I attended a talk a little while ago where they described how the re-modeled their dementia services for the farming communities they were serving (who also often don’t trust health professionals) by embedding them into the local churches. And co-delivering the clinics with members of the local church. I considered this innovative and sensitive.
So here is my challenge: What can we do to help our communities with dementia?