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Cited by 294Dementia and Cognitive Impairment ResearchNursing care and researchFamily Caregiving in Mental Illness

The problem with “problem behaviors”: a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient–caregiver dyad

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Ornstein, Katherine, Gaugler, Joseph E.·2012·International Psychogeriatrics
DOI 10.1017/s1041610212000737PMC PMC5769475
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Abstract

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSDs) are routinely cited as important predictors of caregiver burden and depression. Although BPSDs include a wide variety of patient behaviors, they are routinely grouped together as one construct to differentiate them from cognitive symptoms of dementia. Determining the specific BPSDs that result in increased depression and burden for caregivers may elucidate the stress process for caregivers and facilitate the development of effective interventions for caregivers. METHODS: We conducted a systematic review of English-language articles published from 1990 to 2010 to determine whether there are known symptoms or symptom clusters which exert undue negative impact on caregiver depression and burden. Additionally, we review systems used for classifying BSPD symptom clusters and determine whether there have been any mechanisms studied by which individual BPSD symptoms negatively affect caregivers. Finally, we examine how the role of timing of symptoms has been examined within the literature. RESULTS: Thirty-five original research articles examined the impact of an individual behavior symptom on caregiver burden or depression/depressive symptoms. The studies had no consistent system for categorizing symptoms. Although depression, aggression, and sleep disturbances were the most frequently identified patient symptoms to impact negatively on caregivers, a wide range of symptoms was associated with caregiver burden and depression. CONCLUSIONS: The evidence is not conclusive as to whether some symptoms are more important than others. The studies reviewed were largely exploratory relative to the differential impact of individual BPSDs and did not focus on testing causal mechanisms by which specific symptoms exert more impact on caregiver mental health than others. Future research may benefit from the re-conceptualization of BPSDs from the perspective of their impact on the caregiver to examine hypothesis-driven differences among BPSD symptom clusters.

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  • Burden is greater for those managing someone with dementia.

    “where it has been found that burden is greater for those managing someone with dementia (Brodaty & Donkin, 2009; Tremont, 2011; Ornstein & Gaugler, 2012).”

    From Dementia and family burden of care in Lebanon (2017) · cites this paper as Ornstein & Gaugler, 2012

    The Introduction (page unavailable) says dementia caregiving has well-documented negative effects and discusses caregiver burden. It does not establish that burden is greater for dementia caregivers than for another group; its comparisons concern symptoms within dementia care. (LLM, conf=0.83)

    Experimental — accuracy not yet measured

  • The personality and behavior of a person with Alzheimer's are affected, and these changes are often among the most challenging for family caregivers.

    “The personality and behavior of a person with Alzheimer's are affected as well, and these changes are often among the most challenging for family caregivers.[460][461][462]”

    From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [460]

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Research works printed but not linked: 1

  1. Molloy DW Lever R Bedard M Guyatt G Butt G 1996 Burden in care-givers of older adults with impaired cognition: the relationship with dysfunctional behaviors, daily living and mood Annals of the Royal College of Physicians and Surgeons of Canada 29 151 154

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Authors
Ornstein, K., & Gaugler, J. E.
Affiliations
  • Mount Sinai Hospital (US)
  • University of Minnesota (US)
Corresponding author
Ornstein, Katherine
ORCID
Venue
International Psychogeriatrics
Publisher
Elsevier BV
Published
2012-10
Volume
24
Issue
10
Pages
1536-1552
ISSN
1041-6102 (ISSN-L)
DOI
10.1017/s1041610212000737
PMC
PMC5769475
OpenAlex
W2020183497
Cited by
294
References
61
Citations by year
2026: 17 · 2025: 14 · 2024: 17 · 2023: 26 · 2022: 23 · 2021: 30 · 2020: 20 · 2019: 22 · 2018: 32 · 2017: 30 · 2016: 17 · 2015: 20 · 2014: 10 · 2013: 14
FWCI
1.89
Type
journal article
Language
en
Open access
Licence
Locations
  • International Psychogeriatrics (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Institute of Mental Health (T32MH013043)
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
behavioral and psychological symptoms of dementia, caregiver depression, caregiver burden, dementia caregiving, aggression, sleep disorders, symptom clusters, caregiver mental health, patient-caregiver dyads
MeSH terms
Dementia, Depression, Humans, Caregivers, Cost of Illness

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