Ruffell, Tamatha; (2019) “Who to tell, how and when?” The qualitative exploration of the experiences of people living with dementia and their supporters attending a newly developed dementia disclosure support programme. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

This three-part thesis provides a systematic meta-review of reviews evaluating dyadic interventions for community-dwelling people living with dementia and their carers. It details the development of a dyadic intervention for this population, and critically appraises the process of conducting research in this area. Part 1: Stand Alone Paper. A systematic meta-review and narrative synthesis of reviews evaluating dyadic interventions for community dwelling people living with dementia and their carers. Material was drawn from 6 systematic reviews of dyadic psycho-social interventions for community dwelling people living with dementia and their carers. There is a good theoretical and evidence-based rationale for the use of a dyadic approach. Improvements have been made in the direct assessment of the person living with dementia and interventions have been shown to be acceptable and beneficial for both members of the dyad. However, interventions fail to consider the interpersonal landscape when assessing efficacy. Further research needs to be done to create a dyadic model of stress which includes the impact of interpersonal factors which can be used to guide the development and evaluation of interventions in this area. Part 2: Empirical paper. The development of a dementia disclosure support programme for people living with dementia and their supporters is detailed. The intervention was piloted with seven people living with dementia and their seven supporters. A semi-structured interview was conducted after the intervention to explore participants’ experience of the group and the impact of the group on their experience of living with dementia. Four themes were generated: “a cross on my back”; “denial and acceptance”, a “safe space”; and “wanting more” from the group. Participants in this study were aware of the public stigma that surrounds this diagnosis, and this was found to inform their attitudes towards dementia disclosure. The group not only afforded them a safe space to discuss dementia disclosure, but it also increased communication within dyads. The findings also highlighted participants’ unmet needs regarding the wider issue of diagnostic adjustment and support afforded to the dyad post-diagnosis. Part 3: Critical Appraisal. Reflections on the challenges of adapting an intervention for dementia dyads were considered along with a review of the study design, recruitment methods used, challenges faced in the administration of study materials and reflections on the process of thematic analysis. Future implications for research and practice were also considered.

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