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Grief and Loss in People Living with Dementia: A Review and Metasynthesis of Qualitative Research

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Background: Grief is a natural response to any loss that is important to an individual. This proposal aims to study how people living with dementia experience grief and loss related to their diagnosis. This research has been developed in collaboration with people living with dementia who are members of the ‘Rare Dementia Support (RDS) Focus Group’. The aim of this research is to develop a support group programme, using findings from the research literature alongside research conversations with people living with dementia.

Method: 19 studies met the inclusion criteria in the literature review, as assessed by two independent reviewers. We then quality appraised and synthesized the included studies following guidance from Long and colleagues (2020). We initially used high-quality papers to develop the coding framework and added additional codes from medium-quality papers. Although we coded low-quality papers using the established framework, we did not add new codes at this stage. We analysed and synthesized the study findings using inductive thematic analysis.

Results: Five key dimensions of grief in people living with dementia were identified during the analysis process: Grieving for the Person I Used to Be, Grieving for the Person I Will Become, Grieving for How Others See Me, Grieving for Those Who Have Died and What Helps Me With My Grief.

Conclusion: People living with dementia can experience grief and loss related to their diagnosis, and there are strategies that help to navigate this experience. As many of the studies in the literature review did not directly include people living with dementia, fourteen people living with dementia have now taken part in research conversations about their own personal experiences of loss as part of this research project. The next phase will be to analyse these conversations and develop a support group programme, in collaboration with people living with dementia.


Funding

The impact of multicomponent support groups for those living with rare dementias

Economic and Social Research Council

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