Design and trial of a patient-reported experience measure for people living with moderate to advanced dementia

Hannah Sugarman

Research output: ThesisDoctoral Thesis

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Dementia is a progressive neurodegenerative condition resulting in global cognitive and functional impairments. People living with dementia have complex care needs and are at high risk of adverse outcomes, yet they tend to be excluded from providing feedback about their experiences of care due to dementia-related impairments which preclude them from using the feedback tools available. This is particularly true for people in the moderate-advanced stages of dementia. This study aimed to develop and trial a patient-reported experience measure (PREM) for people living with moderate-advanced dementia. A draft PREM was refined through focus groups and cognitive interviews. Healthcare professionals in an older peoples’ community team then trialled the draft PREM with sixteen people living with moderate-advanced dementia. Seven professionals were then interviewed to explore their experiences of using the PREM, and the results were analysed using Thematic Analysis (Braun & Clarke, 2006). Four major themes were identified: ‘The right tool for the job’, ‘Communicating with the person’, ‘How dementia can get in the way’ and ‘What worked well?’. The findings suggested that times when the PREM was successfully used to elicit feedback were characterised by flexible, person-centred approaches. There were several challenges in using the PREM, including symptoms affecting engagement and practical obstacles posing a challenge to the implementation of tools in services. The results indicated that a stepped approach to the collection of feedback is preferable to support everyone in the client group to participate. Implications for how feedback processes could be further developed through clinical practice and future research are discussed.
Original languageEnglish
Awarding Institution
  • Royal Holloway, University of London
  • Theodore, Kate, Supervisor
Award date1 Nov 2016
Publication statusUnpublished - 2016

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