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

Maud Hevink, Claire Wolfs, Rudolf Ponds, Shelley Doucet, Carrie McAiney, Isabelle Vedel, Maria Maćkowiak, Joanna Rymaszewska, Greta Rait, Louise Robinson, Marie Poole, Meredith Gresham, Yun-Hee Jeon, Lyn Phillipson, Lee-Fay Low, Henry Brodaty, Marjolein de Vugt, Frans Verhey

Research output: Contribution to journalArticleAcademicpeer-review

4 Citations (Scopus)

Abstract

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.
Original languageEnglish
Pages (from-to)e5916
JournalInternational journal of geriatric psychiatry
Volume38
Issue number5
DOIs
Publication statusPublished - 1 May 2023

Keywords

  • dementia
  • informal caregivers
  • international
  • post-diagnostic support
  • surveys

Cite this