A few months ago I started following the blog of an inspirational lady. Kate Swaffer is, amongst many other things, an "advocate and activist for aged and dementia care". She also happens to be living with the disease.
As the parent of a child with a disability I have often gone to great lengths to make sure that professionals understand that I am the expert on my son; I advocate for him and know him better than they ever will. So it isn't rocket science to understand that this is no different from anyone else with a disability; they or their advocates know them best.
I work with/for people living with dementia and I believe that to do my best for the people I work with I need to listen to them, and others who have the disease. So when I read Kate blog entry 'Please, don't send me to Day Care" yesterday, it struck me to the core and I felt it was so important that I share it with everyone I know who works, or spends time with people living with dementia. With Kate's permission I copy it here;
If you search in googleimages.com for an image to match the term ‘Day Care’ you mostly only find images for children day care services and centres, as per this image I have added today! I wrote the following for a friend and colleague, to read out at a conference who is attending soon with an audience of life style and activity co-ordinators.
“Let me begin with the word ‘day’ used in ‘day’ respite.
Many people with dementia, who are over the age of about 5 or 6, feel the use of the word ‘day’ program, ‘day’ respite, or ‘day’ activity centre, is little different to the use of the term ‘day’ care that we took our pre school children to.
It is, in itself, infantilising us before we even get there, and many with dementia would simply refuse to go to any respite program with the use of the word ‘day’ in it.
Let me finish with a few words about what happens in these well meaning ‘day programs, and how offensive some of the things that happen there,that I and many others with dementia find them to be. Using ‘gold stars’ for winning some make believe event, or plastic ‘gold medals’ for the best piece of ‘art work’. Often, people with dementia are almost forced into these programs, to give their care partners a much needed break, but, the activities need to be age appropriate, and truly engaging and individually meaningful. By that, I mean meaningful to us, and with some inherent value to our lives and existence, not easy for you or of interest to the lifestyle coordinator.
Activities need to also have some inherent value in them, value to our lives, things that make us want to get out of bed, not just fill in the time and the boredom of being there. Real activities, like going out into our community and being supported to volunteer or joining a sporting club, a gardening club, or even a social group outside of the place of respite. Activities like singing, music and dancing, but only if we like those activities. Some of us might prefer to be in a book club. This is also, after all, part of being I our community, and part of our community being dementia friendly.
Please think about our needs, stop the use of words, terms and activities that feel to us like child care, and finally, ask yourself if what you are offering is gender and age appropriate, as well as individualised to ensure it is person centred.”
Author: Kate Swaffer © 2015
Working myself in residential care I can only hope that not all Day Care centres are as Kate fears, I do know though that many residential homes are. If you work in this field or spend time with someone who has dementia please think and think again when you plan activities. Read and re-read Kate's advice, she knows, she's living it.