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Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs

Published online by Cambridge University Press:  08 August 2014

Travonia B. Hughes ,
Betty S. Black ,
Marilyn Albert ,
Laura N. Gitlin ,
Deirdre M. Johnson ,
Constantine G. Lyketsos  and
Quincy M. Samus
Travonia B. Hughes
Affiliation:
Department of Mental Health, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
Betty S. Black
Affiliation:
Department of Psychiatry and Behavioral Sciences, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
Marilyn Albert
Affiliation:
Department of Neurology, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
Laura N. Gitlin
Affiliation:
Department of Community-Public Health, School of Nursing, The Johns Hopkins University, Baltimore, Maryland, USA
Deirdre M. Johnson
Affiliation:
Department of Psychiatry and Behavioral Sciences, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
Constantine G. Lyketsos
Affiliation:
Department of Psychiatry and Behavioral Sciences, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
Quincy M. Samus*
Affiliation:
Department of Psychiatry and Behavioral Sciences, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
*
Correspondence should be addressed to: Dr Quincy Miles Samus, PhD, MS, Assistant Professor of Psychiatry, Department of Psychiatry and Behavioral Sciences, The Johns Hopkins School of Medicine, 5300 Alpha Commons Drive, 4th Floor, Baltimore, MD 21224, USA. Phone: 410-550-6744. Email: [email protected].
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Abstract

Background:

This study examines the relationship of unmet dementia-related care needs of community-dwelling persons, and their caregivers (CGs), to measures of caregiver burden.

Methods:

Cross-sectional baseline data were analyzed from participants in a dementia care coordination trial of community-residing persons with dementia (PWD) (n = 254) and their caregivers (n = 246). Participants were recruited from Northwest Baltimore, Maryland. The Zarit Burden Inventory (ZBI) was used to measure subjective caregiver burden. Objective burden was measured by estimating the total hours per week spent doing things for the PWD and/or how many hours CGs missed paid work in the prior month due to caregiving responsibilities. The Johns Hopkins Dementia Care Needs Assessment was used to identify unmet dementia-related care needs. Bivariate and multivariate linear regressions examined the relationship of unmet needs, demographic, clinical, or functional characteristics with caregiver burden measures.

Results:

In adjusted multivariable models, patient neuropsychiatric symptoms and caregiver unmet emotional needs explained 22% of the variance in ZBI scores. In adjusted multivariable models, caregiver need for respite, patient functional dependency, and caregiver unmet specialty medical needs explained 26% of the variance in the hours per week spent caregiving. PWD's level of functional dependency was the sole correlate of missed time at work, explaining 11% of the variance.

Conclusions:

Addressing potentially modifiable unmet caregiver needs may reduce subjective and objective caregiver burden.

Keywords

caregiverssubjective caregiver burdenobjective caregiver burdendementia caredementia care coordinationcommunity care
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Issue 11 , November 2014 , pp. 1875 - 1883
Copyright
Copyright © International Psychogeriatric Association 2014 

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References

Alexopoulos, G. S., Abrams, R. C., Young, R. C. and Shamoian, C. A. (1988). Cornell Scale for Depression in Dementia. Biological Psychiatry, 23, 271–284. doi:10.1016/0006-3223(88)90038-8.CrossRefGoogle ScholarPubMed
Alzheimer's Association. (2012). 2012 Alzheimer's disease facts and figures. Alzheimer's & Dementia: the Journal of the Alzheimer's Association, 8, 131–168. doi:10.1016/j.jalz.2012.02.001.CrossRefGoogle Scholar
American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: American Psychiatric Association.Google Scholar
Black, B., et al. (2008). Manual for the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Baltimore, MD: Johns Hopkins University.Google Scholar
Brandt, J., Spencer, M. and Folstein, M. (1988). The telephone interview for cognitive status. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 1, 111–117.Google Scholar
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A. and Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308–2314. doi:10.1212/WNL.44.12.2308.CrossRefGoogle ScholarPubMed
Etters, L., Goodall, D. and Harrison, B. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. doi:10.1111/j.1745-7599.2008.00342.x.CrossRefGoogle ScholarPubMed
Folstein, M., Folstein, M. and McHugh, P. (1975). “Mini-Mental State.” A practical method for grading the cognitive state of patients for the clinician. The American Journal of Psychiatric Residents,12, 189–198. doi:org/10.1016/0022-3956(75)90026-6.CrossRefGoogle ScholarPubMed
Gaugler, J. E., et al. (2011). Does caregiver burden mediate the effects of behavioral disturbances on nursing home admission? American Journal Geriatric Psychiatry, 19, 497–506.CrossRefGoogle ScholarPubMed
Hurd, M. D., Martorell, P., Delavande, A., Mullen, K. J. and Langa, K. M. (2013). Monetary costs of dementia in the United States. New England Journal of Medicine, 368, 1326–1334.CrossRefGoogle ScholarPubMed
Jorm, A. (2004). The informant questionnaire on cognitive decline in the elderly (IQCODE): a review. International Psychogeriatrics, 16, 275–293. doi:http://dx.doi.org/10.1017/S1041610204000390.CrossRefGoogle ScholarPubMed
Lyketsos, C. G., Galik, E., Steele, C., Steinberg, M., Rosenblatt, A., Warren, A., Sheppard, J. M., Baker, A. and Brandt, J. (1999). The General Medical Health Rating: a bedside global rating of medical comorbidity in patients with dementia. Journal of the American Geriatrics Society, 47, 487–491.CrossRefGoogle ScholarPubMed
Matsuda, O. (1999). Reliability and validity of the subjective burden scale in family caregivers of elderly relatives with dementia.International Psychogeriatrics, 11, 159–170. doi:http://dx.doi.org/10.1017/S1041610299005712.CrossRefGoogle ScholarPubMed
Mohamed, S., Rosenbeck, R., Lyketsos, C. G. and Schneider, L. S. (2010). Caregiver burden in Alzheimer's disease: cross-sectional and longitudinal patient correlates. American Journal of Geriatric Psychiatry, 18, 917–927. doi:10.1097/JGP.0b013e3181d5745d.CrossRefGoogle ScholarPubMed
Pinquart, M. and Sorensen, S. (2004). Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: a meta-analytic comparison. Aging & Mental Health, 8, 438–449. doi:10.1080/13607860410001725036.CrossRefGoogle Scholar
Pinquart, M. and Sorensen, S. (2011). Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychology and Aging, 26, 1–14. doi:10.1037/a0021863.CrossRefGoogle ScholarPubMed
Rabins, P. V. (1998). The caregiver's role in Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 9 (Suppl 3), 25–28.CrossRefGoogle ScholarPubMed
Richardson, T. J., Lee, S. J., Berg-Weger, M. and Grossberg, G. T. (2013). Caregiver health: health of caregivers of Alzheimer's and other dementia patients. Current Psychiatry Reports, 15, 367. doi:10.1007/s11920-013-0367-2.CrossRefGoogle ScholarPubMed
Sink, K. M., Covinsky, K. E., Barnes, D. E., Newcomer, R. J. and Yaffe, K. (2006). Caregiver characteristics are associated with neuropsychiatric symptoms of dementia. Journal of the American Geriatric Society, 54, 796–803. doi:10.1111/j.1532-5415.2006.00697.CrossRefGoogle ScholarPubMed
Stommel, M., Collins, C. E. and Given, B. A. (1994). The costs of family contributions to the care of persons with dementia. Gerontologist, 34, 199–205.CrossRefGoogle Scholar
Thies, W. and Bleiler, L. (2013). 2013 Alzheimer's disease facts and figures. Alzheimer's & Dementia: the Journal of the Alzheimer's Association, 9, 208–245. doi:http://dx.doi.org/10.1016/j.jalz.2013.02.003.Google Scholar
Wilkinson, I. and Graham-White, J. (1980). Psychogeriatric dependency rating scales (PGDRS): a method of assessment for use by nurses. British Journal of Psychiatry, 137, 558–565. doi:10.1192/bjp.137.6.558.CrossRefGoogle ScholarPubMed
Wolfs, C. A., Kessels, A., Severens, J. L., Brouwer, W., de Vugt, M. E., Verhey, F. R. and Dirksen, C. D. (2012). Predictive factors for the objective burden of informal care in people with dementia: a systematic review. Alzheimer Disease and Associated Disorders, 26, 197–204. doi:10.1097/WAD.0b013e31823a6108.CrossRefGoogle ScholarPubMed
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649–655. doi:10.1093/geront/20.6.649.CrossRefGoogle ScholarPubMed