Hearing Their Voice: A Systematic Review of Dementia Family Caregivers' Needs

Gerontologist. 2016 Oct;56(5):e70-88. doi: 10.1093/geront/gnw078. Epub 2016 Apr 21.


Purpose: The number of Australians living with dementia is expected to increase from currently 332,000 to 900,000 by 2050. Around 200,000 unpaid caregivers are caring for community-dwelling people living with dementia, and therefore, supporting the caregivers' needs is of paramount importance. The aim of this systematic review was to understand the perceived needs of immediate family caregivers of community-dwelling older adults with dementia.

Design and methods: We examined qualitative studies that reported on the self-perceived needs of partner and/or offspring caregivers who were caring for community-dwelling older adults with dementia.

Results: Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers' personal needs. The first theme further included four subthemes: information and knowledge needs; activities of daily living, instrumental activities of daily living and Behavioural and Psychological Symptoms of Dementia support needs; formal care support needs; and informal care support needs. The second theme consisted of two subthemes: the need to address caregivers' physical and psychological health and the need to manage caregivers' own lives.

Implications: The findings have important implications for the development of interventions that comprehensively address caregivers' individual needs. Caregivers' unmet needs highlight key areas for improvement in policy and service provision. The findings demonstrate the need for more rigorous qualitative studies exploring the perceived needs of partner and offspring caregivers respectively. Furthermore, examining the underlying relationships between different caregiver needs is warranted.

Keywords: Community dwelling; Dementia caregiving; Immediate families; Perceived needs; Synthesis of qualitative studies.

Publication types

  • Review
  • Systematic Review

MeSH terms

  • Activities of Daily Living*
  • Australia
  • Caregivers*
  • Consumer Health Information*
  • Dementia / nursing*
  • Health Status*
  • Humans
  • Mental Health*
  • Needs Assessment
  • Social Support*