Families Caring for Elders in Residence: Issues in the Measurement of Burden
Abstract
This paper examines the concept of caregiving burden and urges a multidimensional perspective in which burden is viewed as a mediating force between the elders' impairments and the impact that caregiving has on the lives of caregivers and their families. The analysis underscores the need to apply the concept of burden to subjective interpretations by caregivers of the elders' different kinds of impairments including impairment of activities of daily living, cognitive incapacity, disruptive behavior, and lack of sociability. The analysis also demonstrates that a variety of less subjective effects of caregiving are important and measureable. These issues are elaborated and illustrated using data and findings from the Benjamin Rose Institute's survey of 614 families in which impaired elders resided with and were provided care by family members.
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Psychological morbidity in ADRD caregivers is strongly associated with caregivers' coping strategies, such that support and healthy coping strategies are associated with less stress and burden.
“This psychological morbidity is strongly associated with caregivers’ coping strategies [12, 13], such that support and healthy coping strategies are associated with less stress and burden [14–16].”
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 [14]
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“Perceived burden was shown to have a major impact on the lives of caregivers.(15,16)”
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Living with the mentally ill: Effects on the health and functioning of other household members
Gallagher, S. K., & Mechanic, D. (1996) · Social Science & Medicine · doi:10.1016/0277-9536(95)00296-0 · Cited by 110 · see citing works
Psychotropic Drug Use among Caregivers of Patients with Dementia
Clipp, E. C., & George, L. K. (1990) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.1990.tb03496.x · Cited by 111 · see citing works
Psychoeducational interventions for family caregivers: Preliminary efficacy data
Lovett, S. B., & Gallagher-Thompson, D. E. (1988) · Behavior Therapy · doi:10.1016/s0005-7894(88)80005-4 · Cited by 111 · see citing works
Life Events as Correlates of Burden in Spouse Caregivers of Persons with Alzheimer's Disease
Russo, J. E., & VITALIANO, P. P. (1995) · Experimental Aging Research · doi:10.1080/03610739508253985 · Cited by 106 · see citing works
Bédard, M., Kuzik, R., Chambers, L. A., Molloy, D. W., Dubois, S. J., & Lever, J. A. (2005) · International Psychogeriatrics · doi:10.1017/s1041610204000857 · Cited by 104 · see citing works
“The functional status of the care-recipient, and especially its multidimensional nature (Poulshock and Deimling, 1984), is a key determinant of caregiver burden.”
BackgroundHwang, C., Weng, H.-H., Wang, L.-F., Tsai, C., & Chang, H. (2014) · Journal of Motor Behavior · doi:10.1080/00222895.2014.891970 · Cited by 103 · see citing works
“The Caregiver Burden Scale (CBS) is a validated questionnaire for caregivers (Poulshock & Deimling, 1984; Robinson, 1983; Zarit, Reever, & Bach-Peterson (1980).”
MethodStresses and Satisfactions of Family Caregivers to Older Stroke Patients
Kinney, J. M., Stephens, M. A. P., Franks, M. M., & Norris, V. K. (1995) · Journal of Applied Gerontology · doi:10.1177/073346489501400101 · Cited by 103 · see citing works
Multidimensional determinants of family caregiver burden in Alzheimer's disease
Park, M., Sung, M., Kim, S. K., Kim, S., & Lee, D. Y. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000460 · Cited by 101 · see citing works
“…dementia and their influence have been explained by several models, for example, the Lazarus and Folkman (1984) stress-appraisal-coping model, the Poulshock and Deimling (1984) two-dimensional model of psychosocial morbidity, the Haley et al. (1987) stress and coping model, or the Pearlin et al.…”
MethodKramer, B. J. (1993) · Family Relations · doi:10.2307/585336 · Cited by 100 · see citing works
Stress is in the eye of the beholder:reconceptualizing the measurement of carer burden
Nolan, M., Grant, G. G., & Ellis, N. C. (1990) · Journal of Advanced Nursing · doi:10.1111/j.1365-2648.1990.tb01853.x · Cited by 99 · see citing works
Phipps, S. (2005) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsi002 · Cited by 98 · see citing works
“It was adapted from a measure designed for use with families providing care to elderly relatives suffering from Alzheimer’s disease or other dementia (Poulshock & Deimling, 1984) but is applicable to any situation in which a family member is caring for a chronically ill loved one.”
Method
- Authors
- Poulshock, S. W., & Deimling, G. T.
- Affiliations
- Benjamin Rose Institute on Aging (US)
- Case Comprehensive Cancer Center (US)
- ORCID
- Deimling, G. T.
- Venue
- Journal of Gerontology
- Publisher
- Oxford University Press (OUP)
- Published
- 1984-03-01
- Volume
- 39
- Issue
- 2
- Pages
- 230-239
- ISSN
- 0022-1422 (ISSN-L)
- OpenAlex
- W2016101351
- Cited by
- 582
- References
- 0
- Citations by year
- 2026: 3 · 2025: 5 · 2024: 4 · 2023: 5 · 2022: 7 · 2021: 5 · 2020: 4 · 2019: 4 · 2018: 8 · 2017: 9 · 2016: 12 · 2015: 6 · 2014: 12 · 2013: 13 · 2012: 9
- FWCI
- 50.47
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Gerontology (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Aging, Elder Care, and Social Issues
- Keywords
- caregiver burden, family caregivers, older adults, activities of daily living, cognitive impairment, disruptive behavior, sociability, family caregiving
- MeSH terms
- Activities of Daily Living, Aged, Attitude, Behavior, Cognition, Family, Home Nursing, Humans
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
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