Joany K Millenaar1, Christian Bakker2,3, Deliane van Vliet3, Raymond T C M Koopmans3,4, Alexander Kurz5, Frans R J Verhey1, Marjolein E de Vugt1. 1. School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands. 2. Florence, Mariahoeve Center for Specialized Care in Young-Onset Dementia, Den Haag, The Netherlands. 3. Department of Primary and Community Care: Center for Family Medicine, Geriatric Care and Public Health, Radboudumc Alzheimer Centre Nijmegen, Radboud University, Nijmegen, The Netherlands. 4. Joachim en Anna Center for Specialized Geriatric Care, Nijmegen, The Netherlands. 5. Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany.
Abstract
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.
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.