Dementia
NIHR Dementia Research Programme (Dem-Comm)
Within our theme, the NIHR Dem-Comm programme post-doctoral fellows aimed to building research capacity in palliative and social care for people living with dementia.
Both fellows, Dr Luijnenburg and Dr Williamson are co-applicants of the EMPOWER Dementia Network Plus, which focuses on tackling inequalities in dementia care through inclusive research. They are also members of the EMPOWER Coproduction Steering Committee, contributing to the Network’s overall coproduction approach.
We jointly developed Dementia Research Ethics Resources, a comprehensive guide designed to support researchers in crafting responsible and effective dementia research.
Spirituality in residential care for people living with dementia: implementing reflective tools for care home workers of people living with dementia (SpiritDem)
Dr Luijnenburg developed guidance and policy recommendations to support care homes in better meeting residents’ spiritual needs, particularly those living with dementia. She co-developed the SPIRIT in Care guide with care home staff, residents living with dementia, and their family and friends to increase understanding of the spiritual needs of residents living with dementia in care homes and support the care home workforce to include spirituality in day-to-day care practice. Manjot Brar supported this work. Read more about this work.
Improving care for people living and dying with dementia
Dr Williamson is leading and supporting multiple studies that focus on improving care for people living and dying with dementia. This includes:
- PALLDEM-Homecare: Homecare practitioners providing end-of-life care for people with dementia (principal investigator). This two-year project is funded by Marie Curie and the Alzheimer’s Society and involves the co-design, implementation and evaluation of the Integrated Palliative care Outcomes Scale for Dementia among homecare workers.
- Influence of primary and community care service use on hospitalisation among people with dementia in the last three months of life (co-applicant). This one-year study is funded by Marie Curie and the Alzheimer’s Society and involves a secondary mixed-methods analysis of national survey data.
- Palliative care in local dementia strategies. A documentary analysis of Integrated Care System dementia strategies to understand palliative care priorities. This builds on policy engagement activities to improve the use of evidence in dementia palliative and end-of-life care.
- Components of post-diagnostic support impacting unplanned high-cost care. A collaboration with colleagues from the University of Plymouth to scope opportunities to advance post-diagnostic support.
- Bridging the evidence gap in dementia care. An international collaboration (as part of the Health Policy Professional Interest Area of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment) to understand factors that influence evidence use in dementia policy and practice.
Dementia Community Research Network
We co-lead the DCRN, which is a network of community organisations, public members, and dementia researchers. We aim to improve care for all people affected by dementia by giving opportunities for people of all backgrounds and ethnicities to be involved in research. This involves promoting knowledge exchange and collaboration among DCRN members through annual community conferences and monthly meetings. Our focus is on increasing inclusion in dementia research, evidenced by our recent co-produced guide that will help researchers facilitate wider inclusion in dementia research. Read more about the DCRN.
Dementia Lens: Raising Dementia Awareness Through Immersive Learning
Dr Luijnenburg and colleagues developed a Virtual Reality (VR) tool for retail workers to demonstrate the challenges people living with dementia might face when going to a supermarket. The VR tool aids in raising more awareness of a dementia, inform users on how to support people living with dementia in a retail environment, and is a step toward more dementia friendly communities.