Hearing the lived experiences of extra-care residents with dementia

Something I didn’t know, until joining the group, is that more than a fifth of people living in extra care also have dementia.

Despite this figure, there’s little research on what the benefits and challenges of this type of housing can be.

This particular project, led by researchers from the University of Worcester’s Association for Dementia Studies, was committed to making my voice and that of other people living with dementia heard. So when Donna, a community development officer who works at the scheme where I live, asked me if I would be interested in getting involved, I jumped at the chance.

I’ve always liked to help others and make a difference. I volunteered as a Samaritan for 15 years, so this project felt like another great opportunity to do something positive for others.

Then came something I never imagined doing. Along with the other group members and researchers, I was invited to launch the project findings at the Houses of Parliament. That was a truly special moment for me.

With the Alzheimer’s Society calling on the government to prioritise dementia in policy and decision-making as part of this year’s Dementia Action Week campaign, to have met MPs and Peers to talk about the research outcomes cements my feelings on how worthwhile being involved with this project has been.

Now that the project is over, I’m proud to see how the findings have been collated and tailored to support different groups of people, including those directly affected by dementia, as well as organisations and professionals providing extra care or commissioning support to people with dementia.

“Then came something I never imagined doing. Along with the other group members and researchers, I was invited to launch the project findings at the Houses of Parliament”

From booklets to infographics, as well as video case studies and summaries, DemECH has created a resource hub that captures the important role extra-care housing has in supporting people with dementia.

Seeing everything come together, and for everyone to see what we created, has been like watching a flower bloom. Everything we have worked on has come to fruition, and now we can share it with the rest of the world to inspire action.

I’m grateful for everyone who made the project possible and thankful that talking about my experience has been able to contribute to something bigger.

Christine, a Housing 21 extra-care resident and DemECH advisory group member