title: Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Department of Psychiatry and Neuropsychology,Maastricht University Medical Center,Maastricht,the Netherlands.
authors.forename: Lizzy M M
authors.initials: LM
authors.lastname: Boots
authors.affiliation: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Department of Psychiatry and Neuropsychology,Maastricht University Medical Center,Maastricht,the Netherlands.
authors.forename: Claire A G
authors.initials: CA
authors.lastname: Wolfs
authors.affiliation: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Department of Psychiatry and Neuropsychology,Maastricht University Medical Center,Maastricht,the Netherlands.
authors.forename: Frans R J
authors.initials: FR
authors.lastname: Verhey
authors.affiliation: CAPHRI School for Public Health and Primary Care,Department of Health Services Research,Maastricht University,Maastricht,the Netherlands.
authors.forename: Gertrudis I J M
authors.initials: GI
authors.lastname: Kempen
authors.affiliation: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Department of Psychiatry and Neuropsychology,Maastricht University Medical Center,Maastricht,the Netherlands.
authors.forename: Marjolein E
authors.initials: ME
authors.lastname: de Vugt
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000523:psychology / Q000628:therapy*; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D036301:Qualitative Research; D013240:Stereotyping
keywords: focus group