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Cited by 247Dementia and Cognitive Impairment ResearchNursing care and researchFamily Caregiving in Mental Illness

Prevalence of depression and burden among informal care-givers of people with dementia: a meta-analysis

Open access
Collins, Rebecca N., Kishita, Naoko·2020·Ageing and Society
DOI 10.1017/s0144686x19000527
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Abstract

This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so.

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  • A meta-analysis (43 studies, 19,911 participants) found a pooled prevalence of family carer depression of 31.2% (27.7-35.0).

    “A meta-analysis (43 studies, 19911 participants) found a pooled prevalence of family carer depression of 31.2% (27.7 - 35.0).(481)”

    From Dementia prevention, intervention, and care: 2024 report of the Lancet standing Commission (2024) · cites this paper as [481]

    The Study characteristics section reports 43 included studies but 16,911 participants, not 19,911. The Risk of bias across studies section reports a trim-and-fill-adjusted depression prevalence of 31.24% (95% CI 27.70–35.01%), matching the cited estimate after rounding; the unadjusted pooled estimate was 33.6%, based on 38 studies with depression estimates (Prevalence of depression). (LLM, conf=0.92)

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  • The prevalence of anxiety and depressive symptoms in unpaid family carers of people living with dementia is around 32%.

    “Previous systematic reviews demonstrate that the prevalence of anxiety and depressive symptoms in unpaid family carers of people living with dementia is around 32 % [1,2].”

    From The clinical and cost effectiveness of internet-delivered self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): Study protocol for a randomised controlled trial with ethnically diverse family carers (2024) · cites this paper as [1]

    The Discussion reports a trim-and-fill adjusted depression prevalence of 31.24% among informal caregivers of people with dementia, supporting the approximate 32% figure for depression. The paper does not report a corresponding prevalence of anxiety, so it does not support applying that figure to both anxiety and depressive symptoms. Page numbers were not provided in our copy. (LLM, conf=0.90)

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  • The pooled prevalence of depression in family carers of people with dementia is 31.2%.

    “Recent systematic reviews demonstrated that the pooled prevalence of depression and anxiety in family carers of people with dementia are 31.2% and 32.1% respectively (Collins & Kishita, 2019; Kaddour & Kishita, 2020).”

    From Exploring the impact of carer stressors and psychological inflexibility on depression and anxiety in family carers of people with dementia (2020) · cites this paper as Collins & Kishita, 2019

    The Risk of bias across studies section reports a trim-and-fill-adjusted pooled depression prevalence of 31.24%, which supports the quoted figure when rounded. But the Prevalence of depression section gives 33.6% as the overall pooled estimate; the citing sentence omits that 31.2% is an adjusted estimate. (LLM, conf=0.87)

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  • Caring for a family member with dementia is a chronic stressor associated with high rates of depression and anxiety in family caregivers.

    “Caring for a family member with dementia presents a chronic stressor, leading to profound psychological strain, as evidenced by high rates of depression and anxiety in family caregivers (Collins & Kishita, Citation2020; Kaddour & Kishita, Citation2020).”

    From How do care-related beliefs contribute to depression and anxiety in family caregivers of people with dementia? Testing a cognitive vulnerability-stress model. (2025) · cites this paper as Collins & Kishita, 2020

    The Introduction describes psychological difficulties associated with dementia caregiving, and the Prevalence of depression section reports a pooled depression prevalence of 33.6% among informal caregivers. The paper does not establish high rates of anxiety or show that chronic caregiving stress causes either condition; its analysis focuses on depression and perceived burden. (LLM, conf=0.87)

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  • Absence of sufficient institutional, financial, and psychological support increases the risk of caregiver burden.

    “Absence of sufficient institutional, financial, and psychological support increases the risk of caregiver burden [7, 8].”

    From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [7]

    The Burden section discusses financial impacts and psychological health as aspects or predictors of caregiver burden, but does not link a lack of financial or psychological support to increased risk. The Discussion and Conclusion call for interventions to reduce burden; they do not establish that insufficient institutional support increases it. Searched for institutional, financial, psychological and formal support in relation to burden. (LLM, conf=0.72)

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Cites

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Research works printed but not linked: 4

  1. [28]28. Jorm AF (2004) The Informant Questionnaire on cognitive decline in the elderly (IQCODE): a review. International Psychogeriatrics, 16, 275-293.
  2. [53]53. Munn Z, Moola S, Lisy K and Riitano D (2014) The Joanna Briggs institute reviewer's manual 2014: The systematic review of prevalence and incidence data. South Australia: The Joanna Briggs Institute.
  3. [68]68. Reisberg B, Ferris SH, de Leon MJ and Crook T (1982) The Global Deterioration Scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139, 1136-1139.
  4. [78]78. Simpson CE (2010) Sleep: effect on dementia caregiver mastery, perceived stress and depression (unpublished doctoral dissertation). The University of Texas at Austin, Austin, TX.

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Authors
Collins, R. N., & Kishita, N.
Affiliations
University of East Anglia (GB)
Corresponding author
Collins, Rebecca N.
ORCID
Venue
Ageing and Society
Publisher
Cambridge University Press (CUP)
Published
2019-06-06
Volume
40
Issue
11
Pages
2355-2392
ISSN
  • 0144-686X (ISSN-L)
  • 1469-1779
DOI
10.1017/s0144686x19000527
OpenAlex
W2938077275
Cited by
244
References
118
Citations by year
2026: 39 · 2025: 55 · 2024: 43 · 2023: 37 · 2022: 41 · 2021: 20 · 2020: 9
FWCI
2.95
Type
journal article
Language
en
Open access
Licence
www.cambridge.org/core/terms (unspecified)
Locations
  • Ageing and Society (publishedVersion)
  • UEA Digital Repository (University of East Anglia) (acceptedVersion)
Funders
  • U.S. Department of Health and Human Services
  • American Psychiatric Publishing
  • American Association of Nurse Practitioners
  • American Psychiatric Nurses Association
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords
depression, caregiver burden, informal caregivers, dementia, prevalence, spousal caregivers, gender differences, caregiver interventions

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