Problems with Stigma and Ethnic Groups

As a person who could be  classed as White British with dementia, I was truly amazed at a National Dementia Action Alliance meeting yesterday to learn if the problems with class and caste when it comes to Black and Ethnic people who have the same illness as myself.

Although I had seem problems with stigma etc, in this country, I suppose I had not thought about the problems faced by those of the Black and Ethnic Minorities in the UK. But I am also lucky that my family have stuck with me all of the way.

We heard many harrowing and sometimes tearful stories yesterday and I guess that it took my by total surprise, and was a little stunned to say the least, but that is down to a total lack of understanding, some may say ignorance, on my part and I guess that I am not alone in this.

I had thought I had problems even after my diagnosis, but they were nothing compared to the problems we heard about yesterday

So perhaps we need to start again and look at the problems arising and use those in the know to find positive ways of overcoming these problems.

A lot of those we spoke about came into the UK from the 1950s onwards and brought their own set of ideas which I guess no one took any notice of.

When we have dementia and talk of going home, we may well mean going back to the place of our birth, the village we grew up in, and for many people that is difficult to get straight in our brains.

Yet in some sense this made a lot of sense to me without ever thinking about it at the time.

Around 2004 we moved back to the North East of England after my diagnosis, and after losing my job through the illness.

Shortly after coming back we went with a Cousin,  to a Christmas service in the Village I was born in, and we really enjoyed it. It felt strange at first then I felt at home.

However two of the people at the carol service actually lived in the house which had been owned by my family many years ago, and they asked my wife and I in, after hearing that I had actually lived there.

It was amazing, but what struck me was the feeling that I had actually returned back home and I felt totally relieved, even though we did not live there anymore. To enter what had been my bedroom nearly brought tears to my eyes.

It was a strange feeling and sometimes, when I go to visit an elderly aunt in the same village, I pass this house and it gives me a warm feeling.

However I know now that the house belongs to someone else, but other people coming into the country many years ago may well have left villages or even land, so that when they return they can start again, something I had never even considered.

In some sense I had left this village and then moved to a town, then after getting married we moved to the big city, London and then Oxford, both were a shock to the system as we were both treated as outsiders even though we lived in Oxford for 30 Years,

So in some sense I can now start to understand the problems associated with these groups who moved to the UK, and how they must have felt.

Many of us grew up in a society where you did not mix or speak to certain people in the community, for reasons that at the time were beyond me as a child, but looking back there were problems with class back in the 1950s in the UK, and although it means nothing to me now, it could well affect others as their dementia progresses. I can vaguely remember my father telling not to speak to certain people but did not understand why, however now I can see why.

So we must now get to grips with this situation, and formulate ways of getting round the problems which could be vast in some places.

I guess that by using the Alzheimer's Society etc, we will be able to find ways out of this problem even though it may well take years to set up and train people

Let us hope that now things move a little bit faster for those in need


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