Patients' and carers' views on communication and information provision when undergoing assessments in memory services.

Clare Abley, Jill Manthorpe, John Bond, John Keady, Kritika Samsi, Sarah Campbell, Sue Watts, Louise Robinson

    Research output: Contribution to journalArticlepeer-review


    OBJECTIVES: To explore patients' and carers' views on what constitutes high-quality communication and information provision during diagnostic assessment in memory clinic services in three areas of England. METHODS: Interviews with 27 people with cognitive impairment (13 with confirmed dementia) and 26 carers (20 matched pairs). Interviews continued until theoretical saturation was reached. Interview transcripts were subject to constant comparative analysis; data interpretation occurred in 'data clinics'. RESULTS: People with memory problems undergoing assessment often have unmet information needs, especially patients with a diagnosis other than Alzheimer's disease and those who do not receive a diagnosis. Patients wish to be kept informed about both the assessment and its outcomes. Some have unrealistic expectations of the process (expecting assessment and diagnosis to be complete in two weeks) and some experience what appear to be long delays (over 12 months) in receiving results. Most appreciated clear and honest communication about any diagnosis. Post-diagnostic groups, organized by local memory services, afford opportunities to learn practical strategies and gain informal peer support. Voluntary organizations may be an essential source of information. CONCLUSIONS: Communication and information need improvement for patients undergoing assessment for possible dementia, especially for those considered unlikely to benefit from medication and those with mild cognitive impairment.
    Original languageEnglish
    JournalJournal of health services research & policy
    Issue number3
    Publication statusPublished - Jul 2013


    • communication
    • information
    • memory clinics

    Research Beacons, Institutes and Platforms

    • Dementia@Manchester


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