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Systematic review
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
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

http://dx.doi.org/10.1136/bmjspcare-2020-002242

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    Footnotes

    • Correction notice This article has been updated since it was first published. The article type has been changed to Systematic review.

    • 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.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.