Supporting people who live alone
Informing policy to better meet the needs of people living alone with dementia or another neurodegenerative condition
What are we trying to find out?
- How many people are living alone with dementia (of any type), Parkinson’s disease, Motor Neurone Disease, Huntington’s disease or other similar conditions?
- What is it like to live alone with one of these conditions and how does that experience change over time? We are interested in both people who live alone but have some family support, and people who live alone with no support.
- What sorts of services do people living alone use and how much do these cost? How does this change over time?
- How can health and social care services best support people living alone?
Why is this important?
About one in three UK households are single-person households and the number of older people living alone in the UK is increasing fast. We think that about 1 in 7 people with dementia live alone. We do not know how many people live alone with other neurodegenerative conditions, but Parkinson’s UK for example says that ‘many’ people with Parkinson’s live alone. We expect more people to be living alone with these conditions in the future, so we need more knowledge and better advice now.
Too often, health and social care professionals assume there is a family carer available. While most people who live alone do have some support nearby they can call on, others have no support.
People who live alone may struggle to access the services and support they need. They are more at risk of crises and emergency hospital admissions. Little is known about their exact needs and what would help this sometimes-forgotten group.
How are we going to do it?
- We will use national databases to estimate how many people are living alone with a neurodegenerative condition in England and by Integrated Care Board (ICB).
- We will review the evidence which has been published on this topic. We will search scientific journals, policy reports and any available guidance or recommendations.
- We will gather information from our Knowledge Exchange Community. Where we find gaps in the information available, we may interview people living alone to understand their experiences better.
- We will summarise all the evidence gathered and work with our stakeholders to identify what recommendations we can make to health and social care professionals, and what advice we can give to people living alone and the organisations and community groups that can offer support, as well as carers living at a distance.
Who is involved?
Professor Linda Clare (University of Exeter) is leading the project with colleagues Professor Matthew Prina (Newcastle University), Professor Jan Oyebode (University of Bradford) and Professor Claire Hulme (University of Exeter).
Two experts by experience are part of the core project team. Jane Ward cared for her Mum with dementia who lived alone, and now lives alone herself. Nick Wrigley lives alone with Parkinson’s disease. They link the project with our broader Involvement Network.
We are working with organisations and individual stakeholders who can help us identify the specific challenges of living alone with a particular condition. We are also collaborating with Dementia UK who are working on a related project.
How will we share our findings?
We will
- Prepare a report and a policy brief
- Seek to prepare condition-specific reports in partnership with organisations like Alzheimer’s Society and Parkinson’s UK which they can share with their networks
- Hold a public webinar about the findings as part of our webinar series
- Provide information for people living alone with one of these conditions and their families which they can freely download
- Publish at least one scientific journal article