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Experiences of people with dementia and informal caregivers with post-diagnostic support: data from the international COGNISANCE study

Lookup NU author(s): Maud Hevink, Dr Marie Poole

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).

Abstract

© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Publication metadata

Author(s): Hevink M, Wolfs C, Ponds R, Doucet S, McAiney C, Vedel I, Maćkowiak M, Rymaszewska J, Rait G, Robinson L, Poole M, Gresham M, Jeon Y-H, Phillipson L, Low LF, Brodaty H, de Vugt M, Verhey F

Publication type: Article

Publication status: Published

Journal: International Journal of Geriatric Psychiatry

Year: 2023

Volume: 5

Online publication date: 03/05/2023

Acceptance date: 18/04/2023

Date deposited: 22/05/2023

ISSN (electronic): 1099-1166

Publisher: Wiley

URL: https://doi.org/10.1002/gps.5916

DOI: 10.1002/gps.5916

PubMed id: 37132330

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