Premium
Exploring perspectives of young onset dementia caregivers with high versus low unmet needs
Author(s) -
Millenaar Joany K.,
Bakker Christian,
Vliet Deliane,
Koopmans Raymond T.C.M.,
Kurz Alexander,
Verhey Frans R.J.,
Vugt Marjolein E.
Publication year - 2018
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.4749
Subject(s) - dementia , psychological intervention , needs assessment , coping (psychology) , psychology , gerontology , intervention (counseling) , medicine , perception , caregiver burden , clinical psychology , psychiatry , disease , social science , pathology , neuroscience , sociology
Background This study is part of the Research to Assess Policies and Strategies for Dementia in the Young project. Information about specific needs in young onset dementia (YOD) will provide the basis for the development of an e‐health intervention to assist caregivers in coping with YOD in several European countries. Objective The aim was to investigate the issues caregivers of people with YOD face. Methods A qualitative content analysis method was used to analyse interviews with YOD caregivers. Quantitative data of the Needs in Young Onset Dementia study were used to select caregivers based on a ranking of unmet needs, to capture differences and similarities between caregivers that experienced high levels of unmet needs versus those with low levels of unmet needs. Needs were assessed with the Camberwell Assessment of Needs in the Elderly. Results Findings revealed the following themes: (i) acceptance; (ii) perception of the relationship; (iii) role adaptation; (iv) Availability of appropriate services; (v) social support; and (vi) awareness in the person with dementia and acceptance of help. Several factors seemed more apparent in the caregivers who experienced few unmet needs opposed to the caregivers who experienced more unmet needs. Conclusion The current study provides an in‐depth perspective on the caregiver's experiences and emphasizes specific themes that could be addressed in future interventions. This might contribute to a caring situation in which the caregiver experiences less unmet needs. Copyright © 2017 John Wiley & Sons, Ltd.