Article Text

Impact of dementia on informal care: a systematic review of family caregivers’ perceptions
  1. Patrícia Lindeza1,
  2. Mário Rodrigues2,
  3. João Costa3,
  4. Manuela Guerreiro2 and
  5. Mario Miguel Rosa4
  1. 1ISAMB, Universidade de Lisboa Instituto de Saude Ambiental, Lisboa, Lisboa, Portugal
  2. 2Instituto de Medicina Molecular, Lisboa, Lisboa, Portugal
  3. 3Universidade de Lisboa Centro de Estudos de Medicina Baseada na Evidência, Lisboa, Lisboa, Portugal
  4. 4Lab Farmacologia Clínica, Universidade de Lisboa Faculdade de Medicina, Lisboa, Portugal
  1. Correspondence to Dr Mario Miguel Rosa, Lab Farmacologia Clínica, Universidade de Lisboa Faculdade de Medicina, Lisboa 1649-028, Portugal; mrosa{at}medicina.ulisboa.pt

Abstract

Introduction Caregivers play a major role in providing all the support and care in daily activities for their relatives with dementia. To fully describe the influence of dementia caregiving on family caregivers’ life, we conducted a systematic review including caregivers’ perceptions about the positive and negative aspects of caring and the expressed factors.

Materials and methods We conducted a systematic review including articles from January 1998 to July 2020. Qualitative studies reporting family caregivers’ perceptions about their experiences and the effects/impact of dementia caregiving were eligible. Two authors extracted the data independently, and the analysis focused on the positive and negative aspects of dementia caregiving in caregivers’ life.

Results Eighty-one studies with 3347 participants were included in this review. The positive aspects of caregiving in caregivers’ life encompass personal accomplishment and strengthening relationships, which were enhanced by good medical counselling/formal care support and family/friends support. The negative aspects included emotional and social aspects experienced by caregivers. Other factors such as inappropriate medical/formal care support, illness progression and the costs of dementia contributed to negative appraisal.

Discussion and implications The findings provide insights into the holistic experience of caring for a person with dementia revelling the major positive and negative aspects underlying the caregiver role. The evidence emphasises the need ‘to focus on positive aspects’ and targeted interventions aimed at reducing the negative impact of caregiving, which has serious consequences on caregivers’ quality of life. A multicomplex intervention for dementia informal caregiving should be developed, committing the society to promote mental health, address these community needs and improve the quality of life of the person with dementia and their family caregivers.

  • quality of life
  • home care
  • family management
  • supportive care
  • end of life care
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Footnotes

  • Contributors PL and MR were responsible for study conception, design and drafting of the manuscript. JC created and tested the research strategy. MG and MMR reviewed and made critical revisions to the paper. MMR supervised the study.

  • Funding This review was funded by the 'Fundação para a Ciência e Tecnologia (FCT)' Portugal and Merck Sharp & Dohme Portugal (grant number PDE/BDE/120498/2016).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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