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Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help

Published online by Cambridge University Press:  08 January 2015

Lizzy M. M. Boots
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands
Claire A. G. Wolfs
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands
Frans R. J. Verhey
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands
Gertrudis I. J. M. Kempen
CAPHRI School for Public Health and Primary Care, Department of Health Services Research, Maastricht University, Maastricht, the Netherlands
Marjolein E. de Vugt*
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, the Netherlands
Correspondence should be addressed to: Marjolein E. de Vugt, Maastricht University Medical Center, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, P.O. Box 616, 6200 MD Maastricht, The Netherlands, Phone: +31 433877445, Fax: +31 433875444, Email:



Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.


Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.


Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.


Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.

Research Article
Copyright © International Psychogeriatric Association 2015 

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