Originally posted at Research in Practice for Adults Blog.
Lisa Smith, Research & Development Manager at Research in Practice for Adults, writes about the importance of starting to talk, for Dementia Awareness week. A personal viewpoint, Lisa shares the at-times confusing feelings provoked by our experience of Dementia.
This week is Dementia Awareness week and the Alzheimer’s Society is encouraging people not to bottle it up and to talk about it. Often we don’t talk about our experience of Dementia; I think it can be difficult to talk about. Somehow, as with other mental illness, there’s a stigma attached to it.
I thought I’d take the opportunity to start a conversation about Dementia.
My Aunty Maggie has Alzheimer’s, she was diagnosed in 2007 and if I was asked to use two words to describe how I feel about it, I’d say heartbroken and baffled. Heartbroken, because it’s unimaginably difficult to watch bits of someone you love start to disappear in front of your eyes.
And it is baffling because one moment we can be talking about my job, and I’m telling her about the work that we do for the National Institute for Health and Care Excellence (NICE), developing standards for social care, which then segues into Maggie talking about the clinical guidance for maternity services and the impact of age on maternal health. She’s a midwife by trade and is probably the only person in my family who really understands what I do for a living!
Then the very next conversation we have sitting in her living room in London is about when she can go home, because she doesn’t live here, but in Scotland. It is baffling how you can have those two conversations within five minutes; it’s a curious, confusing disease for all concerned.
That’s my personal experience of Alzheimer’s, and there are many thousands of people with a story to tell about Dementia and its impact on them, or on those close to them.
Professionally I feel pleased that RiPfA is in a position to support the delivery of evidence informed approaches to working with people who have Dementia, and this stream of work has come about through suggestions from our network, and not from me banging a personal drum!
Serendipity is one of my favourite words and that’s what this feels like. We’ve got a workshop coming up on 24 June, Maximising Independence for people with Dementia, led by Prof Gail Mountain, and some linked publications coming out in September.
We’re also having an exciting conversation about work involving people with Dementia which will be in our next delivery programme where RiPfA will be doing something we’ve never done before!
That’s me. Not bottling it up. I hope if you read this that it encourages you to talk about dementia or ask others about their experience of it. Start your conversation today.
(I would like to encourage you to become a Dementia Friend today. Read more.
Lisa Smith, Research and Development Manager, joined RiPfA in July 2013, following over four years of working in a commissioning role for Torbay Council.
Prior to this she worked as a Practice Based Commissioning advisor, working with GP consortia. Lisa is experienced in service redesign and development, having worked as the lead for Bristol Drug Strategy Team in the implementation of Models of Care.
Lisa has a background in research having worked for a number of years at the University of Bath in the Mental Health Research and Development Unit as both a researcher and a research governance facilitator.