Before the Session:
Me: Nah! I really don’t think I should go to any of the dementia sessions.
Brave Me: Why not?
Me: I have my issues and I’m afraid I’ll freak out.
Brave Me: Wimp! Given everything you’ve been through, you should be able to deal with anything these days. Go! Keep quiet when you’re there and then find a corner afterwards to blub in.
The session was led by Dementia Friends, and they began by asking for words which come to mind when we hear the word ‘Dementia’. Failed memory, confusion, paranoia, losing things and personality changes came out. I thought it strange that nobody mentioned loss and fear.
The leaders gave us the five main messages which Dementia Friends want to get across:
- Dementia is not a natural part of old age. One in fourteen of over 65s have dementia but some are much younger.
- Dementia is a disease of the brain. It affects everyone differently. There are over 100 different types of dementia.
- Dementia is not just about losing memory. It also affects motor skills, sequencing, loss of inhibition, judging distance, perception.
- It is possible to live well with it.
- There is more to the person than the dementia.
As a description of dementia, Carole gave us the analogy of a person as a bookcase holding books from every memory of her life, with the most recent memories on the top shelf and her childhood ones at the bottom. As the bookcase begins to rock and topple, the books begin to fall off, those from the top shelf (recent events) dropping first. Imagine that most of the books have disappeared while the person could be living on the shelf containing the 50s. What would she not know about? Not just microwaves, smart phones and videos. Would she know what a teabag is, or what it’s for? How would she make a cup of tea? Should you make it for her, or does this undermine her sense of independence? Perhaps the real way to help her is to buy tea rather than teabags.
One of the most heartening pieces of information for me, as a great believer in the power of language, was that it is no longer acceptable to refer to ‘dementia sufferers’. They are ‘people with dementia’. This reflects the way in which changing the term ‘rape victims’ to ‘rape survivors’ enlightens the public and gives strength to those who have been raped. It is entirely positive, as was this session. The exercises illustrated how perceptions of dementia vary as widely as the people who have these perceptions.
After the Session:
Other People: Are you ok?
Me: (sniff) Sure.
Other People: No, you’re not. What happened? Was it bad?
Me: No, it was bloody good. But I should have listened to myself. There were too many connections. Too many contacts. Too many familiar moments. I shouldn’t have gone. I was right. It was scary. I’ll get some wine and forget about it.
Other People: Not a good idea!
Me: Tough!
- Joy Pascoe
Links relevant to this diagnosis:
Symptoms of Dementia - Alzheimers Disease International
Support - Dementia UK
