Helping researchers to understand how people can continue living alone after a dementia diagnosis

Researchers are learning from volunteers affected by dementia about what best helps people to live independently after a diagnosis.

Dementia research relies on people taking part, but what does ‘taking part’ actually involve?

It could mean having tests or trying out new treatments or devices. 

However, people also provide vital help by sharing their experiences and views.

One study, focused on coastal and rural areas of Kent and Sussex, is looking at what helps people to continue living alone after a dementia diagnosis.

What matters to people 

‘Often, people with dementia want to continue living independently in their own homes,’ says Sarah Polack, Research Fellow at Brighton and Sussex Medical School.

‘However, for some people who live on their own, it can be particularly challenging to access needed services, support and social activities and interaction.

We want to understand what matters to people, what helps them to get support and do the things they want to do, and what makes it difficult.

The researcher interviewing people who live alone and have been diagnosed with dementia. They’re also speaking to relatives and friends who support them, as well as people involved in providing services.

‘We want to learn how people living alone are being considered in service provision in this area, the key challenges and what works well.’

Sarah Polack

Sarah at Brighton and Sussex Medical School

Sarah hopes to finish interviews around the end of February 2025. After that, they’ll analyse the information they’ve collected.

‘We’ll then share findings in workshops with people with dementia living alone and stakeholders involved in dementia services in this region. 

‘Together, we’ll develop recommendations for local policy, practice and research.’

Having a voice in dementia research

This kind of research is essential to improve support for people affected by dementia, and it wouldn’t be possible without their involvement.

‘Hearing the experiences of people with dementia who live on their own is critical,’ says Sarah.

Thankfully, people have been volunteering to take part.

‘I feel quite happy to be taking part in this study,’ says Nigel, who lives with dementia.

I want other people to understand what it is like and how I can meet the challenges of being on my own. I live alone but am not lonely!

Ian, another participant, says, ‘Since my mum’s diagnosis, I have felt a bit hopeless at times.

‘I know she can remain stable for periods of time but there is no treatment for her, no hope of a cure and nothing that will “get better”.

‘I like to think that, even if only in a small way, I am doing something to help forces that will push back against this disease.

‘It feels empowering. I feel like I’m given the chance to have a voice in what’s happening and that feels good. I don’t think dementia is talked about enough and I don’t think society cares as much as it should.’

People like you

Sarah is hugely thankful to the study’s volunteers, many of whom have been found through Join Dementia Research.

‘What a privilege it has been to meet with and learn from the people who have taken part so far,’ she says.

Registering with Join Dementia Research means you can be matched with all kinds of studies that are looking for people like you.

‘Learning from your experiences and perspectives is critical in understanding what the gaps are, and how support services can be better delivered,’ says Sarah.

Ian agrees, ‘It’s only one small act, but every time I’ve taken part in a study, I feel like I’m making a difference, even if only very small.

Breakthroughs in treatment and understanding, as well as increased awareness and reduction in stigma, can only be achieved through people being active, taking part and making their voices heard.

Nothing is as powerful as sharing lived experience.

Research needs you

Call 0333 150 3456 and ask for the Join Dementia Research helpdesk or email [email protected]

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Dementia together magazine

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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