Caregiver burden among dementia patient caregivers: A review of the literature

Journal of the American Academy of Nurse Practitioners

Volumn 20, Issue 8, 2008, Pages 423-428

  Etters, Lynn ^a   Goodall, Debbie ^b   Harrison, Barbara E ^c  

^a Huron Valley Sinai Hospital   (United States)

^b Crittenton Hospital Medical Center   (United States)

^c OAKLAND UNIVERSITY   (United States)

Author keywords

Assessment; Caregiver burden; Dementia; Interventions

Indexed keywords

ADAPTIVE BEHAVIOR; CAREGIVER; CONFLICT; COST OF ILLNESS; DEMENTIA; EDUCATION; ETHNOLOGY; EVIDENCE BASED NURSING; FAMILY; HEALTH SERVICE; HOME CARE; HUMAN; INSTITUTIONALIZATION; LONG TERM CARE; MENTAL STRESS; NURSING; NURSING ASSESSMENT; NURSING HOME; NURSING RESEARCH; PATIENT CARE PLANNING; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; RESPITE CARE; REVIEW; SOCIAL SUPPORT; STATISTICS; UNITED STATES;

ADAPTATION, PSYCHOLOGICAL; CAREGIVERS; CONFLICT (PSYCHOLOGY); COST OF ILLNESS; DEMENTIA; EVIDENCE-BASED NURSING; FAMILY; HEALTH SERVICES NEEDS AND DEMAND; HOME NURSING; HUMANS; INSTITUTIONALIZATION; LONG-TERM CARE; NURSING ASSESSMENT; NURSING HOMES; NURSING RESEARCH; PATIENT CARE PLANNING; QUALITY OF LIFE; RESPITE CARE; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; UNITED STATES;

EID: 49249122418     PISSN: 10412972     EISSN: 17457599     Source Type: Journal    
DOI: 10.1111/j.1745-7599.2008.00342.x     Document Type: Review

References (56)

1. Acton, G. J. Kang, J. (2001). Interventions to reduce the burden of caregiving for and adult with dementia: A meta-analysis. Research in Nursing and Health, 24, 349 360.
2. Adams, B., Aranda, M., Kemp, B. Takagi, K. (2002). Ethnic and gender differences in distress among Anglo American, African American, Japanese American, and Mexican American spousal caregivers of persons with dementia. Journal of Clinical Geropsychology, 8, 279 301.
3. Almberg, B., Grafström, M. Winblad, B. (1997a). Caring for a demented elderly person-burden and burnout among caregiving relatives. Journal of Advanced Nursing, 25, 109 116.
4. Almberg, B., Grafström, M. Winblad, B. (1997b). Major strain and coping strategies as reported by family members who care for aged demented relatives. Journal of Advanced Nursing, 26, 683 691.
5. Almberg, B., Jansson, W., Grafstrom, M. Winblad, B. (1998). Differences between and within genders in caregiving strain: A comparison between caregivers of demented and non-caregivers of non-demented elderly people. Journal of Advanced Nursing, 28, 840 858.
6. Alzheimer's Association 2006). National site. Retrieved August 3, 2006, from http://www.alz.org/
7. Alzheimer's Association 2007). Alzheimer's disease facts and figures. Retrieved September 5, 2007, from http://www.alz.org/
8. American Medical Association n.d Caregiver Self-Assessment Questionnaire. Retrieved March 14, 2007, from http://www.ama-assn.org/ama/upload/mm/36/ caregivertooleng.pdf
9. Annerstedt, L., Elmstahl, S., Ingvad, B. Samuelsson, S. (2000). Family caregiving in dementia. An analysis of the caregiver's burden and the "breaking-point" when home care becomes inadequate. Scandinavian Journal of Public Health, 28 (1 23 31.
10. Austrom, M. G., Damush, T. M., Hartwell, C. W., Perkins, T., Unverzagt, F., Boustani, M., et al 2004). Development and implementation of nonpharmacologic protocols for the management of patients with Alzheimer's disease and their families in a multiracial primary care setting. Gerontologist, 44, 548 553.
11. Beeri, M. S., Werner, P., Davidson, M. Noy, S. (2002). The cost of behavioral and psychological symptoms of dementia in community dwelling Alzheimer's disease patients. International Journal of Geriatric Psychiatry, 17, 403 408.
12. Belle, S. H., Burgio, L., Burns, R., Coon, D., Czaja, S. J., Gallagher-Thompson, D., et al 2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups. Annals of Internal Medicine, 145, 727 738.
13. Buhr, G. T., Kuchibhatla, M. Clipp, E. C. (2006). Caregivers' reasons for nursing home placement: Clues for improving discussions with families prior to the transition. Gerontologist, 46, 52 61.
14. Butcher, H. K., Holkup, P. A. Buckwalter, K. C. (2001). The experience of caring for a family member with Alzheimer's disease. Western Journal of Nursing Research, 23 (1 33 55.
15. Calderon, V. Tennstedt, S. (1998). Ethnic differences in the expression of caregiver burden: Results of a qualitative study. Journal of Gerontological Social Work, 30, 159 178.
16. Callahan, C. M., Boustani, M. A., Unverzagt, F. W., Austrom, M. G., Damush, T. M., Perkins, A. J., et al 2006). Effectiveness of collaborative care for older adults with Alzheimer disease in primary care. Journal of the American Medical Association, 295, 2148 2157.
17. Chumbler, N., Grimm, J., Cody, M. Beck, C. (2003). Gender, kinship, and caregiver burden: The case of community-dwelling, memory-impaired seniors. International Journal of Geriatric Psychiatry, 18, 722 732.
18. Coen, R., O'Boyle, C. A., Coakley, D. Lawlor, B. A. (2002). Individual quality of life factors distinguishing low-burden with high-burden caregivers of dementia patients. Dementia & Geriatric Cognitive Disorders, 13, 164 170.
19. Deimling, G. T., Smerglia, V. L. Schaefer, M. L. (2001). The impact of family environment and decision-making satisfaction on caregiver depression: A path analytic model. Journal of Aging and Health, 13 (1 47 71.
20. de Vugt, M. E., Riedijkb, S., Aalten, P., Tibbend, A., van Swietenc, J. C. Verhey, F. R. J. (2006). Impact of behavioural problems on spousal caregivers: A comparison between Alzheimer's disease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 35 41.
21. de Vugt, M. E., Stevens, F., Aalten, P., Lousberg, R., Jaspers, N. Verhey, F. R. J. (2005). A prospective study of the effects of behavioral symptoms on the institutionalization of patients with dementia. International Psychogeriatrics, 17, 577 589.
22. Family Caregiver Alliance 2006). Caregiver assessment: Principles, guidelines and strategies for change (Vol. I). National Center on Caregiving : San Francisco, CA.
23. Gallagher-Thompson, D., Haley, W., Guy, D., Rupert, M., Arguelles, T., Zeiss, L. M., et al 2003). Tailoring psychological interventions for ethnically diverse dementia caregivers. Clinical Psychology: Science and Practice, 10, 423 438.
24. Gallicchio, L., Siddiqi, N., Langenberg, P. Baumgarten, M. (2002). Gender differences in burden and depression among informal caregivers of demented elders in the community. International Journal of Geriatric Psychiatry, 17, 154 163.
25. Gaugler, J. E., Kane, R. L., Kane, R. A. Newcomer, R. (2005). Unmet care needs and key outcomes in dementia. Journal of the American Geriatrics Society, 53, 2098 2105.
26. Gitlin, L. N., Belle, S. H., Burgio, L. D., Czaja, S. J., Mahoney, D., Gallagher-Thompson, D., et al 2003). Effect of multicomponent interventions on caregiver burden and depression: The REACH multisite initiative at 6-month follow-up. Psychology & Aging, 18, 361 374.
27. Gonyea, J., O'Connor, M., Carruth, A. Boyle, P. (2005). Subjective appraisal of Alzheimer's disease caregiving: The role of self-efficacy and depressive symptoms in the experience of burden. American Journal of Alzheimer's Disease and Other Dementias, 20, 273 280.
28. Haley, W., Gitlin, L., Wisniewski, S., Mahoney, D., Coon, D., Winter, L., et al 2004). Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: Findings from the REACH study. Aging & Mental Health, 8, 316 329.
29. Hepburn, K. W., Tornatore, J., Center, B. Ostwald, S. W. (2001). Dementia family caregiver training: Affecting beliefs about caregiving and caregiver outcomes. Journal of American Geriatrics Society, 49, 450 457.
30. Heru, A. M. Ryan, C. E. (2006). Family functioning in the caregivers of patients with dementia: One-year follow-up. Bulletin of the Menninger Clinic, 70, 222 231.
31. Hirschman, K. B., Shea, J. A., Xie, S. X. Karlawish, J. S. (2004). The development of a rapid screen for caregiver burden. Journal of the American Geriatrics Society, 52, 1724 1729.
32. Hope, T., Keene, J., Gedling, K., Fairburn, C. G. Jacoby, R. (1998). Predictors of institutionalization for people with dementia living at home with a carer. International Journal of Geriatric Psychiatry, 13, 682 690.
33. Janevic, M. R. Connell, C. (2001). Racial, ethnic, and cultural differences in the dementia caregiving experience: Recent findings. Gerontologist, 41, 334 347.
34. Kasuya, R. T., Polgar-Bailey, P. Takeuchi, R. (2000). Caregiver burden and burnout: A guide for primary care physicians. Postgraduate Medicine, 108 (7 119 123.
35. Kim, J. M., Shin, I. S., Jeong, S. J., Gormley, N. Yoon, Y. S. (2002). Predictors of institutionalization in patients with dementia in Korea. International Journal of Geriatric Psychiatry, 17, 101 106.
36. Langa, K. M., Chernew, M. E., Kabeto, M. U., Herzog, A. R., Ofstedal, M. B., Willis, R. J., et al 2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16, 770 778.
37. Li, Y. Sprague, D. (2002). Study on home caregiving for elders with Alzheimer's and memory impairment. Illness, Crisis & Loss, 10, 318 333.
38. Marriott, A., Donaldson, C., Tarrier, N. Burns, A. (2000). Effectiveness of cognitive-behavioural family intervention in reducing burden of care in carers of patients with Alzheimer's disease. British Journal of Psychiatry, 176, 557 562.
39. Mausbach, B. T., Aschbacher, K., Patterson, T., Ancoli-Israel, S., von Kanel, R., Mills, P., et al 2006). Avoidant coping partially mediates the relationship between patient problem behaviors and depressive symptoms in spousal caregivers. American Journal of Geriatric Psychiatry, 14, 299 306.
40. Miyamoto, Y., Ito, H., Otsuka, T. Kurita, H. (2002). Caregiver burden in mobile and non-mobile demented patients: A comparative study. International Journal of Geriatric Psychiatry, 17, 765 773.
41. Neufeld, A. Harrison, M. J. (2003). Unfulfilled expectations and negative interactions: Nonsupport in the relationships of women caregivers. Journal of Advanced Nursing, 41, 323 331.
42. Pearlin, L. I., Mullan, J., Semple, S. Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30, 583 594.
43. Pinquart, M. Sörensen, S. (2006). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577 595.
44. Rinaldi, P., Spazzafumo, L., Mastriforti, R., Mattioli, P., Marvardi, M., Polidori, M. C., et al 2005). Predictors of high level of burden and distress in caregivers of demented patients: Results of an Italian multicenter study. International Journal of Geriatric Psychiatry, 20, 168 174.
45. Savundranaygam, M. Y., Hummert, M. L. Montgomery, R. S. V. (2005). Investigating the effects of communication problems on caregiver burden. Journals of Gerontology. Series B: Psychological Sciences and Social Sciences, 60B (1 S48 S55.
46. Schulze, B. Rossler, W. (2005). Caregiver burden in mental illness: Review of measurement, findings and interventions in 2004-2005. Current Opinion in Psychiatry, 18, 684 691.
47. Schulz, R., Boerner, K., Shear, K., Zhang, S. Gitlin, L. (2006). Predictors of complicated grief among dementia caregivers: A prospective study of bereavement. American Journal of Geriatric Psychiatry, 14, 650 658.
48. Sink, K. M., Holden, K. F. Yaffe, K. (2005). Pharmacological treatment of neuropsychiatric symptoms of dementia: A review of the evidence. Journal of the American Medical Association, 293, 596 608.
49. Spruytte, N., Van Audenhove, C. Lammertyn, F. (2001). Predictors of institutionalization of cognitively-impaired elderly cared for by their relatives. International Journal of Geriatric Psychiatry, 16, 1119 1128.
50. Sullivan, T. M. (2002). Caregiver Strain Index (CSI). Retrieved March 13, 2007, from the Hartford Institute of Geriatric Nursing website at http://www.geronurseonline.org/uploaded_documents/CaregiverStrainIndex.pdf
51. Torti, F. M., Gwyther, L. P., Reed, S. D., Friedman, J. Y. Schulman, K. A. (2004). A multinational review of recent tends and reports in dementia caregiver burden. Alzheimer Disease & Associated Disorders, 18 (2 99 109.
52. Wimo, A., Winblad, B., Aquero-Torres, H. von Strauss, E. (2003). The magnitude of dementia occurrence in the world. Alzheimer Disease and Associated Disorders, 17 (2 63 67.
53. Wisniewski, S. R., Belle, S. H., Coon, D. W., Marcus, S. M., Ory, M. G., Burgio, L. D., et al 2003). The resources for enhancing Alzheimer's caregiver health (REACH): Project design and baseline characteristics. Psychology & Aging, 18, 375 384.
54. Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K. Dane, K., et al 2002). Patient and caregiver characteristics and nursing home placement in patients with dementia. Journal of the American Medical Association, 287, 2090 2097, 2153 2154.
55. Zarit, S., Reever, K. E. Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20, 649 655.
56. Zarit, S., Todd, P. A. Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. Gerontologist, 26, 260 266.