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“If you could do one thing to make a real difference for people living with dementia, what would it be?”

21 September 2015

Back in May, during Dementia Awareness Week, this was one of the questions we asked you to help improve our understanding of the best ways to support people living with dementia and inform our decisions about what to fund. On World Alzheimer’s Day, Abigail Ryan from our Learning & UK Programmes team shares some of the thought-provoking responses we’ve had…

Abigail Ryan

Abigail Ryan

Empathy, understanding and communication were big themes that came through in your responses. You wanted people to stop focusing so much on memory and stop correcting people’s perception of reality. You would like people to take the time to reach out to someone with dementia and learn to communicate with them through sensory language rather than just words. The impact of smell, touch, taste, sight and sound will be different for each person with dementia, and we should look past it to see these different people.

Raising awareness and changing the image of dementia

You told us you’d like to continue to help change the negative image of dementia – and show that it’s possible to adapt and live well with dementia. You highlighted some simple concepts about dementia where a greater awareness could make a big difference. For example, as dementia affects different parts of the brain, it changes the way it is wired and alters sensory perception. This might mean that something a person enjoyed in their younger days, such as a genre of music, may become irritating as these changes happen.

Making services feel familiar

You feel that making services and settings feel more home-like and less clinical could make a big difference. Home, identity and transitions from home are very important and should be remembered particularly at times of crisis, when a person with dementia often has little control or choice about where they would like to continue living.

Maintaining independence for as long as possible

Some of you would like to focus on giving individuals and families the knowledge and information they need to avoid hospital admissions and maintain their independence for as long as possible. This also includes making communities more dementia friendly. For example, transport is vital to helping people access support within their community, so can cause difficulties for people living with dementia if it’s not accessible to them.

Involving people living with dementia

So what about us? Here at the Fund, the one thing we would like to do to make a difference for people living with dementia is make sure they are involved in shaping the projects we fund. It was encouraging that the importance of talking directly to people living with dementia and their carers came through strongly in your responses. This might be as simple as talking with people, or by communicating in more creative ways.

Another related point that came up in the responses was that there has been some mission drift in the voluntary and community sector towards dementia care because it has become a source of funding. Therefore it’s important to challenge ways of working and encourage people and organisations to think about how they could provide better services and support by involving people living with dementia and understanding their continued aspirations for living well.

What do you think? We’d love to continue the conversation on our online community. Join our Later Life group, check out the forum and chip in to the discussions, or post your own.

Of course this wasn’t the only question we asked in our survey, and we had so many great responses. You can read a full copy of them here, or this summary of the findings.

You might also be interested to see some of the projects we are considering for funding through our UK Accelerating Ideas pilot. Some of those are working with people living with dementia, and you can read and comment on project summaries on our online community.

Your responses to our survey and comments on the online community can help inform our funding decisions, so we’ll be reflecting on what we’ve learnt from you and what this means for us. Given the wide range of things that we fund, it really is invaluable for us to get your insights into an area where you have such expertise. So thank you to those of you who have already got involved, and hope to hear from more of you soon.

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