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People living with dementia and their families
For many people receiving a diagnosis of dementia brings with it some difficult feelings. Some times people are frightened about what lies ahead. Others can feel embarrassed about having a memory problem or worry about what people will think about them. Because of these worries, some people prefer not to talk about their diagnosis, or they cope by avoiding situations where their difficulties might be highlighted.
As one person who attended the 'Living Well with Dementia' course told us:
"You don’t like to talk about it. I kept it to myself before I said anything, and wouldn’t tell anyone. I thought that they’d think I was mad."
While all of these reactions are very understandable, they can lead to people who have been diagnosed feeling lonely and isolated.
We believe that one of the best ways to help people to live well with dementia is often to find a way to talk with them about their difficulties and worries. We do this by bringing people together who have had the same experiences. Because everyone is in the same boat, then this helps people to feel that they are not alone and that they won’t be judged. Often, before they start the course, people have misconceptions about their condition - for instance, thinking that they will rapidly deteriorate, or that they won’t be able to have any quality of life. Coming on the LivDem course can help to reassure people.
We also realise that it can take time for people to feel confident enough to talk openly with others. Because of this, the course has a clear structure, and we make sure that nobody has to talk if they don’t want to. The LivDem course is structured so that the person who has a diagnosis of Alzheimer’s disease or another type of dementia attends eight weekly sessions. There are two additional sessions, one at the beginning and one at the end of the eight weeks which we invite families and friends to come to as well.
While it is important to point out that the LivDem course is not for everyone, our research suggests that most people who attend the course become more confident and are able to talk more openly about their problems.
If you are interested in finding out more about LivDem, and whether a course may be running locally, then contact us on through LivDem@uwe.ac.uk, or contact your local memory clinic.
We are getting together a small group of people with lived experience of dementia and/or caring for someone with dementia to advise us on the LivDem programme and our ongoing research. If you are interested in finding out more about how you can get involved then contact the team at livdem@uwe.ac.uk