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Background and objectives Policies to support people living with dementia increasingly focus on strengthsbased approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable
resilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for this
population.
Methods A conceptual model and associated data informed the item generation of the draft resilience measure.
Regular meetings with professionals (n=7) discussed response-scale formatting, content and face validity, leading
to refinement and item reduction. Cognitive interviews with people living with dementia (n=11) then examined
the face and content validity of items and the suitability of response-scale formatting. These two phases informed
subsequent revision and further item reduction of the resilience measure.
Results The first item generation exercise led to 140 items. These were independently assessed by the professionals
and this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychological
strengths; practical approaches for adapting to life with dementia; continuing with hobbies, interests and activities;
strong relationships with family and friends; peer support and education; participating in community activities; the
role of professional support services). Cognitive interviews explored the 63 items with people living with dementia.
Detailed feedback led to items removed due to difficulty with (a) understanding (N=7); (b) answering (n=11); (c) low
preference for that item (n=6); and (d) presence of a preferred item within a cluster of similar questions (n=4). Items
were amended to enhance clarity/conciseness (n=19) leading to a final 37-item pool.
Conclusion Established methods for measurement development included the expertise of people with dementia
and led to the generation of a set of items for a new resilience measure that were understandable and acceptable
to this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as being
derived across individual, community and societal level resources.

Keywords

  • Dementia, Resilience, Strengths-based, Measure
Original languageEnglish
Article number96
JournalJournal of Patient Reported Outcomes
Volume7
Issue number1
Early online date27 Sept 2023
DOIs
Publication statusPublished - 27 Sept 2023

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