In this PhD, I have co-produced and initially tested the MARQUE intervention, designed to reduce agitation in people living with dementia in care homes through changing care staff practices. I have considered future implementation and how to embed and sustain changes at all stages, resulting in a potentially scalable and practically useful psychosocial intervention.
Central to this thesis is the importance of engaging whole systems in both research and practice. During the co-production of the intervention, engaging stakeholders and those whose lives have been affected by dementia added to what we know from existing research and challenged our academic assumptions about what was important and would work. During the piloting of the intervention, building upon the skills and experiences of staff and using a range of strategies to engage and motivate staff at all levels was integral to maximising the reach and impact of the intervention, mitigating against some of the inevitable organisational barriers to effecting change in care homes.
In conducting in depth qualitative work, I have contributed to wider understanding of agitation experienced by those living with dementia in care homes and of how staff themselves make sense of it and respond. Conceptualising agitation in relational terms and as expression of the unmet needs of residents has utility, providing avenues for intervention via addressing these needs or adapting responses. I have also highlighted how this relates to both the personhood of those living with dementia and the staff caring for them, building on existing understandings.
I have attempted to be rigorous and methodical at all stages of the research process and ultimately, in collaboration with the MARQUE team and with clear direction from my supervisors, have delivered a feasible, replicable and acceptable intervention for testing in the MARQUE cluster RCT. The next steps largely depend on the outcome of the trial. However, together with my supervisors, I am involved
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(as a co-applicant) in applying the learning acquired during this PhD to other areas of dementia care. These include: Care at home for people with dementia (NIDUS (New intervention for independence in dementia) (Alzheimer’s Society funded);
improving sleep for people with dementia (DREAMS (Dementia Related Manual for Sleep) START) (NIHR/HTA funded); and co-production and implementation in dementia care more broadly (Foundation laying to widen access to START) (Alzheimer’s Society funded). I look forward to working on these projects and developing and leading new programmes to improve the lives of people living with dementia and those caring for them.
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