Dementia Caregiver Burden: a Research Update and Critical Analysis
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PURPOSE OF REVIEW: This article provides an updated review of the determinants of caregiver burden and depression, with a focus on care demands and especially the differential effects of various neuropsychiatric symptoms or symptom clusters. Moreover, studies on caregivers for frontotemporal and Lewy body dementias were referred to in order to identify differences and similarities with the mainstream literature based largely on Alzheimer caregivers. RECENT FINDINGS: As a group, neuropsychiatric symptoms are most predictive of caregiver burden and depression regardless of dementia diagnosis, but the effects appear to be driven primarily by disruptive behaviors (e.g., agitation, aggression, disinhibition), followed by delusions and mood disturbance. Disruptive behaviors are more disturbing partly because of the adverse impact on the emotional connection between the caregiver and the care-recipient and partly because they exacerbate difficulties in other domains (e.g., caring for activities of daily living). In behavioral variant frontotemporal dementia, not only are these disruptive behaviors more prominent but they are also more disturbing due to the care-recipient's insensitivity to others' feelings. In Lewy body dementia, visual hallucinations also appear to be distressing. The disturbing nature of disruptive behaviors cuts across dementia conditions, but the roles played by symptoms that are unique or particularly serious in a certain condition need to be explored further.
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ADRD caregivers suffer excessive distress from dementia symptoms that they often cannot change.
“ADRD caregivers experience excessive distress as a result of the challenging behavioral and psychological symptoms of dementia that the caregiver is often unable to change (Cheng, 2017).”
From Feasibility and acceptability of a telephone-based ACT intervention for caregivers (TACTICs) of adults with Alzheimer's disease and related dementias (ADRD): a randomized pilot during the COVID-19 pandemic. (2025) · cites this paper as Cheng, 2017
The Individual Neuropsychiatric Symptoms or Symptom Clusters section reports that disruptive behaviors and other dementia symptoms can be highly distressing to caregivers. The supplied Concluding Remarks likewise describe delusions and disruptive behaviors as distressing. Neither passage establishes that caregivers are often unable to change those symptoms. (LLM, conf=0.85)
Experimental — accuracy not yet measuredADRD caregivers report higher distress, including symptoms of anxiety and depression, caregiving burden, and existential suffering, than caregivers of people with other chronic diseases such as heart failure or cancer.
“ADRD caregivers report higher distress, including symptoms of anxiety and depression [5–9], caregiving burden [10], and existential suffering [11], than caregivers of people with other chronic diseases, such as heart failure or cancer.”
From Feasibility and acceptability of an acceptance and commitment therapy intervention for caregivers of adults with Alzheimer’s disease and related dementias (2021) · cites this paper as [10]
The Introduction (page unavailable) reports that dementia caregivers were more stressed and had more serious depressive symptoms than non-dementia caregivers. It also reports elevated anxiety symptoms among dementia caregivers, but does not establish that their anxiety is higher than that of caregivers for people with heart failure or cancer. (LLM, conf=0.86)
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Kor, P. P. K., Liu, J. Y. W., & Chien, W. T. (2021) · The Gerontologist · doi:10.1093/geront/gnaa125 · Cited by 51 · see citing works
Pinyopornpanish, M., Pinyopornpanish, K., Soontornpun, A., Tanprawate, S., Nadsasarn, A., Wongpakaran, N., & Wongpakaran, T. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02136-7 · Cited by 46 · see citing works
Fowler, N. R., Judge, K. S., Lucas, K., Gowan, T., Stutz, P., Shan, M., Wilhelm, L., Parry, T., & Johns, S. A. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02078-0 · Cited by 39 · see citing works
“ADRD caregivers report higher distress, including symptoms of anxiety and depression [5–9], caregiving burden [10], and existential suffering [11], than caregivers of people with other chronic diseases, such as heart failure or cancer.”
BackgroundAn analysis of carer burden among family carers of people with and without dementia in Ireland
Teahan, Á., Lafferty, A., Cullinan, J., Fealy, G., & O’Shea, E. (2021) · International Psychogeriatrics · doi:10.1017/s1041610220000769 · Cited by 39 · see citing works
Tan, K. P., Ang, J. K., Koh, E. B. Y., Pang, N. T. P., & Mat Saher, Z. (2023) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph20054232 · Cited by 23 · see citing works
The Differential Effects of Caregiving Intensity on Overnight Hospitalization
Meyer, K., Gassoumis, Z., & Wilber, K. (2022) · Western Journal of Nursing Research · doi:10.1177/01939459211002907 · Cited by 16 · see citing works
Risch, A. K., Lechner-Meichsner, F., & Wilz, G. (2025) · Clinical Gerontologist · doi:10.1080/07317115.2024.2393307 · Cited by 14 · see citing works
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Physician-Assisted Suicide in Dementia: Paradoxes, Pitfalls and the Need for Prudence
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Hockemeyer, N. G., Johns, S. A., Judge, K. S., Baucco, C., Gowan, T., Slaven, J. E., & Fowler, N. R. (2025) · Aging & Mental Health · doi:10.1080/13607863.2025.2453823 · Cited by 4 · see citing works
“…2007; Schulz & Martire, 2004; Vitaliano et al. 2003), including symptoms of anxiety and depression (Cooper, Balamurali, & Livingston, 2007; Crespo et al. 2005; Cuijpers, 2005; Joling et al. 2015; Pinquart & Sorensen, 2007), burden (Cheng, 2017), and existential suffering (Schulz et al. 2010).”
Cognitive fusion and treatment response to depression in caregivers of relatives with dementia
Barrera-Caballero, S., Romero-Moreno, R., Vara-García, C., Olmos, R., Márquez-González, M., & Losada-Baltar, A. (2022) · Journal of Contextual Behavioral Science · doi:10.1016/j.jcbs.2022.10.008 · Cited by 3 · see citing works
Keihani, A., McLeod, K. M., Ren, X., & Parkhouse, A. R. (2026) · Preventive Medicine Reports · doi:10.1016/j.pmedr.2026.103538
- Authors
- Cheng, S.-T.
- Affiliations
- University of East Anglia (GB)
- Corresponding author
- Cheng, Sheung-Tak
- ORCID
- Cheng, Sheung-Tak
- Venue
- Current Psychiatry Reports
- Published
- 2017-08-10
- Volume
- 19
- Issue
- 9
- Pages
- 64-64
- ISSN
- 1523-3812 (ISSN-L)
- 1535-1645
- PMC
- PMC5550537
- OpenAlex
- W2744883601
- Cited by
- 595
- References
- 77
- Citations by year
- 2026: 65 · 2025: 74 · 2024: 81 · 2023: 66 · 2022: 80 · 2021: 90 · 2020: 72 · 2019: 50 · 2018: 14 · 2017: 2
- FWCI
- 5.73
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Current Psychiatry Reports (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- UEA Digital Repository (University of East Anglia) (submittedVersion, cc-by)
- Funders
- University of East Anglia
- 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
- caregiver depression, neuropsychiatric symptoms, disruptive behavior, agitation, aggression, disinhibition, delusions, mood disturbance, behavioral variant frontotemporal dementia, dementia with Lewy bodies, Alzheimer's disease, visual hallucinations, caregiver-care recipient relationship, activities of daily living
- MeSH terms
- Adaptation, Psychological, Aged, Dementia, Depression, Female, Humans, Male, Caregivers, Cost of Illness
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