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The Lived Experience of With All

This step provides a personal account from Michele, who lives with dementia, and her husband Carlos, who have both participated in With All.
I think it’s very good for people who have Alzheimer’s. It gives you something else to focus on. And it relaxes you. It makes you happy. And the way they work it is very informal. It’s more like being with a group of friends. It’s not like, say– because I wanted to volunteer for research and I found about that and I thought, well, that sounds good, going to do it. And I’m very pleased that I did.
The first time when I said, you have to come with me– because I asked a friend if she could come with me and she couldn’t do it– I said, well, you have to come with me because I’ve got problems with going on the Tube on my own. And he wasn’t too happy. And then he came, and he loved it! And since then, he’s been looking forward to it! It’s to be together with you and to support you in a different way. I really enjoy it so much, and I’m looking forward to come back again and again and again to be honest.
And I know it is tough for them to have it, but for us as well because everybody participate in their part. And that’s very, very good. One by one, and nobody is better than another. Everybody fantastic. When we were diagnosed with Alzheimer’s, I mean, you think it’s the worst thing that can happen to you. But you still have life, and you have to make sure that you still live your life and not just give up. And this is one of the things that would help you do that.

This step provides a personal account from Michele, who lives with dementia, and her husband Carlos, who have both participated in With All.

Hear from them as they explain their motivations for contributing to research, and what the experience has given them as a couple.

There are many opportunities to help contribute to dementia research, either as somebody who is living with a diagnosis or as a control participant. Some people prefer to take part in research that is much more clinical in nature; others prefer to contribute to research that helps to deepen the lived experience of dementia. Would you have a preference for one or the other? Do you feel that one is more valuable than the other? Share your thoughts in the comments.

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Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

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