Research is a key element in Dementia UK’s strategic aims and runs throughout all our approaches to supporting people with dementia and their families.
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:
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:
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:
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.
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.
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.
An important part of our team’s role is supporting Admiral Nurses and Admiral Nursing Teams in their research endeavor. This support can include:
Autism and dementia are different conditions, but some people have both together. This resource forms part of our Research Strategy priority on dementia and multiple health conditions. The resource was developed in collaboration with Autistica, King’s College London, and people with lived experience of autism and dementia. It explains the similarities in the two conditions, key differences, changes to look out for and how to find support.
Reducing dementia risk and improving people’s experience of living with dementia
Reducing inequalities
Ensuring equality in dementia care
Caring from a distance
Developing and conducting research covering the journey from prevention through to the end of life.
Mild Traumatic Brain Injury and the Contentious Reimagining of Alzheimer Disease-Related Dementia as Environmental Diseases.
Exploring the implications that communication around dementia can have for public understanding and for the wellbeing of those diagnosed with the syndrome, using corpus linguistics.
A national evaluation of social prescribing for people with dementia
Co-designed music therapy intervention and pilot on 2 mental health wards for people with dementia
Adapting and testing an intervention for carers of people with dementia.
Understanding how and why live-in care packages are arranged and sustained when dementia is the primary support need.
Developing integrated dementia care that seamlessly connects health, social care, and community sectors.
Young onset dementia and children and young people with a parent who has young onset dementia.
Communication and care planning.
Understanding distance care in England, and exploring how homecare workers can best support people living with dementia with distance carers.
Family Interventions In Dementia Mental Health Environments.
This study examines everyday cultures of restrictive practices in the care of people living with dementia (PLWD) during an acute hospital admission in order to understand the nature, rationales, and experiences of PLWD, their families, and ward staff.
The PriDem programme was funded by the Alzheimer’s Society to develop and test a ‘good practice’ model of primary care led, post diagnostic dementia care. It reviews existing practice and research on primary care based post-diagnostic support.
Improving social care practice by integrating mouth and teeth care in personal care for people living with dementia.
Providing personal care in the context of families affected by dementia.
A realist evaluation of recovery college support for people with dementia
A feasibility RCT of a cognitive assessment tool for use in care homes to create person centred care plans.
Dementia UK’s Lived Experience Advisory Panel (LEAP) is made up of people living with dementia and family carers
We are delighted to announce that we have joined the Health Research Authority (HRA) in a pledge to improve public involvement in research.
Keep informed with the latest research on dementia care by browsing a range of journals, blogs, and books that our Admiral Nurses have contributed towards.
