As part of Dementia Action Week, Unit researchers Olivia Luijnenburg, Fauzia Knight and Kritika Samsi highlight some of our ongoing work in dementia care research in different settings and topic areas: homecare, care homes, support for carers, community work, reducing inequalities in dementia care and methodological work. (775 words)
Homecare
Our homecare work has led to some novel online guides and resources. Colleagues have produced visual and academic outputs on what the role of Dementia Champions in the homecare sector entails. We have also helped to develop dedicated websites for people living with dementia and those who support them: Forward with dementia is an online guide for people living with dementia and carers to support them after a dementia diagnosis; DemCon 2 (currently under evaluation by homecare workers) is a web-based toilet-use and continence care intervention for homecare workers supporting people living at home with dementia. This project builds on two previous studies to co-design guidance for family carers and health professionals in this context. DemCon 2 will also develop further practical guidance about continence care for use by people living with dementia themselves.
We are also part of the Alzheimer’s Society funded GRACE (Goal diRected, Accessible, & Evidence-based Care for Families affected by dementia), which is a new way to support family carers and people living with dementia, through a manualised intervention using goal setting. We are also contributing to PALLDEM-Homecare, aiming to explore the implementation of the IPOS-Dem in homecare settings.
Care Homes
In care homes, we have done research looking at supporting the workforce to include spiritual care in day-to-day care practice through the SpiritDem project. The Margaret Butterworth Care Home Forum (MBCHF) is the longest running research forum of the Unit and is a webinar series for discussion and learning focused on dementia care in communal settings such as nursing homes, care homes and extra care housing. We are also providing mentorship on a Career Development to a colleague at My Home Life.
Support for carers
The care supporter study (the right to a care supporter from the perspective of social and primary care) aimed to understand the practicalities and possible facilitators and barriers to implementation of a potential new ‘right to a care supporter’. We also led on research around respite in the study ‘Taking a break’ – use of residential respite by people with dementia and carers.
We are also working as part of a large interdisciplinary team to understand distance care in England and explore how homecare workers can best support people living with dementia whose families live more than an hour away (Recognising and Supporting Distance Dementia Care, the CONSIDER study).
Community work
Along with partners from across South London, we coordinate and run the Dementia Community Research Network. DCRN is a network of community, public and research partners with the shared goal of improving care for all people affected by dementia. The network provides opportunities for people of all backgrounds and ethnicities to be involved in research.
Reducing Inequalities
Members of the Unit are part of several national networks dedicated to combat inequalities in dementia care and research. EMPOWER Dementia Network+ is a network of people who want to work together to make things fair and equal for everyone with dementia. SPIN-D Network+ aims to reduce dementia risk and improve people’s experience of living with dementia by supporting new projects and engaging with communities, with reach across the four nations of the UK. As part of SPIN-D, we have partnered with the Youth Involvement and Engagement Lab (and others) and developed a model of community youth brain health champions generating dementia awareness amongst schools in Lewisham in south London. We also contribute to EquaDem, committed to finding solutions to dementia inequalities. And a recent study has focused on ‘Bridging gaps in dementia care, for which we have held Task Groups to co-produce culturally appropriate solutions with South Asian communities.
Methodological and future work
In our projects, we have utilised creative methods, for example, by developing a ‘Gallery of Spiritualities’, Dementia Champions short animation video, and dementia and continence advice website.
Through the recently obtained King’s-Edinburgh Policy Research Collaborative Seed Fund, we have set up a collaboration with colleagues at the Edinburgh Centre for Research on the Experience of Dementia (ECRED). Through the collaboration we are investigating the use of an arts-based methodology to examine care relationships. and explore care challenges from the perspectives of the workforce and people living with dementia.
Olivia Luijnenburg, Fauzia Knight and Kritika Samsi are based at the Health and Social Care Workforce Research Unit in the Policy Institute at King’s College London.