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The DECIDE Study: Dementia carers making informed decisions

Lord, KL; (2016) The DECIDE Study: Dementia carers making informed decisions. Doctoral thesis , UCL (University College London). Green open access

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Abstract

BACKGROUND: Individuals with dementia may require increased care but lose decisionmaking capabilities. Relatives report decisional conflict when making such decisions on behalf of the person with dementia. AIM: To develop and test the acceptability and feasibility of a decision aid (DECIDE manual) to reduce decisional conflict of family carers about decisions regarding their relative with dementia’s future place of residence. METHODS: I conducted a systematic literature review; individual interviews with people with dementia, family carers and healthcare professionals, then developed the DECIDE manual. Following piloting, I tested the manual in a randomised controlled trial with family carers currently making the decision about where their relative with dementia should live. Primary outcomes were the proportion of participants who found DECIDE relevant and useful. Secondary outcomes were differences in group scores on total Decisional Conflict Scale and sub-scales 10 weeks later. I then asked carers about potential improvements to DECIDE. RESULTS: I developed an interactive manual for carers to complete with professionals. I recruited and randomised 41 carers (21 control, 20 intervention). All participants found the DECIDE manual useful and relevant. The intervention group had reduced total decisional conflict compared to controls (mean difference = -11.96, 95% confidence interval [-20.10, -3.83], p = .005). Carers felt more informed about available options, more certain about the decision and clearer about their personal values. Carers found DECIDE did not address disagreement among family members and negotiating services. 5 CONCLUSION: Carers found the DECIDE manual acceptable and useful. Whilst the small sample size means quantitative results must be cautiously interpreted, they are promising. Carers valued the decision aid’s structured information and had less conflict. Future research into addressing the additional barriers to this difficult decision and further trials of the effect of the DECIDE manual in a real world setting and subsequent implementation are logical next steps.

Type: Thesis (Doctoral)
Title: The DECIDE Study: Dementia carers making informed decisions
Event: UCL (University College London)
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Third party copyright material has been removed from ethesis.
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/1522519
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