SPIN-D
Reducing dementia risk and improving people’s experience of living with dementia
Our three focus areas of research
We developed three key research priorities collaboratively with people affected by dementia, health and social care professionals and academics. Collectively, we identified three research priorities that form our plan for the next three years.
Research summary
In the UK it is estimated that one in three people with dementia live alone, and that this is a growing population. People with dementia who live alone report more loneliness and less satisfaction with life. They face unique challenges in accessing assistance and care. Whilst not everyone who lives alone will have a carer, many have families and friends providing support from a distance. Approximately 20% of all informal caregivers provide care from a geographic distance, many of whom are adult children of aging parents.
The aims of this priority theme are:
- how do people who live alone with dementia access support, and what needs to be in place to reduce inequities of provision;
- how can people who live alone be supported to remain independent for as long as possible; and
- what strategies can support families caring from a distance?
Who we’re working with
Our research strategy advisory group includes people currently living alone with dementia, informal carers with experience of providing support from a distance, Admiral Nurses with an interest/particular experience in this topic, DUK colleagues, and external researchers active in this field. We are also in touch with other organisations working on projects in this field to share learning and make sure that we aren’t duplicating work.
Research summary
In the UK, approximately 70,800 of those diagnosed with dementia live with ‘Young Onset Dementia’. This is the term to describe those who began presenting symptoms before the age of 65 years.
Though less common than late onset dementia, young onset dementia can be more challenging to diagnose and manage. Due to their younger age, people may still be working or have only recently retired, have a spouse in employment, and/or still have childcare responsibilities, or care for older relatives. Support services are typically designed for older adults and so can fail to meet the unique needs of those living young onset dementia and their families.
The aims of this priority theme are:
- To understand the unique psychosocial needs of those living with young onset dementia their spouses, children, wider family members and carers.
- Explore how Admiral Nurses can meet these needs and thus support the independence, help maintain of the identity, and improve the overall wellbeing of those with young onset dementia.
- Explore how Admiral Nurses can support the families of those living with young onset dementia, to support their independence, maintain their identity, and improve their overall wellbeing.
Who we’re working with
We are supported by our Research Strategy Advisory Group (RSAG) which includes people living with young onset dementia, carers, Admiral Nurses, Dementia UK colleagues and academic researchers. We also work with other organisations including the
Young Dementia Network, among others, to support high-quality research and disseminate valuable information to those affected by young onset dementia.
Research summary
Many people living with dementia also have additional long-term physical and mental health conditions. People with dementia are around twice as likely to be living with multiple health conditions compared to those without dementia.
Health and care services are typically designed to treat individual conditions in isolation, rather than offering a holistic, person-centred approach. Furthermore, people living with multiple health conditions are more likely to experience wider health inequalities, which can further increase the difficulties they face in accessing and receiving appropriate care.
Our key priorities are:
- To explore the needs of people living with multiple health conditions and dementia, and to understand how Admiral Nurses work with other professionals to address those needs.
- To identify which outcomes matter most to people, to understand the barriers they face in accessing appropriate care and explore how these can be addressed to improve their quality of life.
- To investigate how the presence of additional long-term conditions influences the care and support that individuals receive for their dementia.
Who we’re working with
We work closely with our Research Strategy Advisory Group (RSAG), which includes people living with dementia, carers, Admiral Nurses, Dementia UK colleagues, and academic researchers.
The RSAG plays an active role in shaping and informing every stage of our research activity.
We are core members of the EquaDem network—the first national initiative focused on tackling inequalities in dementia diagnosis and care.
Additionally, we are involved in the MEDAL study, modelling how people living with dementia, alongside other long-term conditions, access and navigate support from health, care, and community services.
Read the full research strategy
To ensure the work of Dementia UK in supporting some of the most vulnerable people affected by dementia is backed by evidence and best practice, this paper sets out Dementia UK’s Research Strategy. It reflects a commitment to work with dementia care researchers to ensure that our nurses are supported in their practice and impact.
How to get involved in research
If you have lived experience of dementia and would like to take part in research with us or have a research proposal you’d like to collaborate on, we’d love to hear from you.
Contact our friendly team by email at researchpublications@dementiauk.org or call us on 020 8036 5400.
How Dementia UK supports researchers
- Support in the dissemination of research findings
- Pilot interventions in Admiral Nurse services
- Coordinate the recruitment of Admiral Nurses as research participants
- Promote the recruitment of people with dementia and or their families as research participants
- Participate as members of expert advisory groups, study management committees, collaborators, co-investigators and work package leads in research studies.
How Dementia UK supports Admiral Nurses
An important part of our team’s role is supporting Admiral Nurses and Admiral Nursing Teams in their research endeavor. This support can include:
- support in developing research questions; design and methodology; data collection; analysis; dissemination and measurement of impact
- support in sourcing and appraising literature
- development of writing skills and support with writing for publication
- linking Admiral Nurses who have shared research interests
- connecting Admiral Nurses with researchers
