The project has been funded by a £296,000 grant from the National Institute for Health Research (NIHR) and will be carried out alongside partners at University College London, Innovations in Dementia and Leeds Clinical Commissioning Group.
Researchers hope to understand the needs of people with dementia who live on their own and do not have someone to help them access services or act as a point of contact – finding out what help they receive and where from.
They will carry out focus groups and interviews with people living alone with dementia as well as in-depth interviews with service providers in four areas to find out what support is available, what works, and what doesn’t. They will also carry out a review of current services.
The project is one of the first to include people living alone with dementia as active participants in research as well as sitting on an advisory board.
A recently published study suggests that the number of people living with dementia worldwide could exceed 150 million by 2050.
Many people with dementia live alone, and they are more at risk of not having their needs met, and of going into hospital or a care home. If a person with dementia does not have someone to act as a point of contact, or help them to access services, they may miss important appointments or not get the support they need.
It is hoped the project will lead to more personalised and targeted dementia support.
Dr Jenni Brooks, Senior Lecturer in Sociology who is leading the research, said: “This research is vital because so many people with dementia want to remain in their own homes, but there is often heavy reliance on informal carers (family and friends) to support this.
“If people do not have a family member or friend who can help them to navigate access to services, there is a risk that they will not get the support they need, which may lead to delays in diagnosis, missed appointments, or needing crisis care.
“Also, people with dementia are often excluded from research if they don't have a carer to support their involvement, which means their perspectives are missing. We hope this research will also generate new knowledge about good ways to involve people without carers.”
Damian Murphy, a co-director of Innovations in Dementia, said: “As we often find out about the needs of people living alone with dementia from their close relatives, there could be an assumption that people in a similar situation without a key ‘contact person’ would have similar needs. This research seeks to discover the needs and circumstances of this group of individuals. It may well reveal new strengths and resources too from within this cohort.
“It can only enrich our understanding of the needs of individuals with dementia living alone without a key contact person, and hopefully serve to advise on more personalised and targeted dementia support.
“The very process itself is of huge benefit in supporting individuals with dementia to be in or nearer the driving seat of research that relates to their real lives. It will engage a group of people with dementia who live on their own as research partners on a project advisory board for the duration of the project.”