Association between Caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Systematic Review
Affiliation(s)
Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada. School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Canada.
Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada. School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Canada.
ABSTRACT
We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers provide to their loved ones with AD. We obtained studies focusing on the care that these caregivers provide for their family members with AD. Our outcome of interest was level or quality of care and the independent variable was caregiver QoL. We extracted data in tabular form and used a narrative synthesis approach to describe our findings. Only one relevant study was included in the review. Overall, the evidence was equivocal regarding the associations between caregiver QoL and the level/quality of care in AD.
We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers provide to their loved ones with AD. We obtained studies focusing on the care that these caregivers provide for their family members with AD. Our outcome of interest was level or quality of care and the independent variable was caregiver QoL. We extracted data in tabular form and used a narrative synthesis approach to describe our findings. Only one relevant study was included in the review. Overall, the evidence was equivocal regarding the associations between caregiver QoL and the level/quality of care in AD.
Cite this paper
Hazzan, A. , Shannon, H. , Ploeg, J. , Raina, P. and Oremus, M. (2014) Association between Caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Systematic Review. Advances in Alzheimer's Disease, 3, 44-53. doi: 10.4236/aad.2014.31006.
Hazzan, A. , Shannon, H. , Ploeg, J. , Raina, P. and Oremus, M. (2014) Association between Caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Systematic Review. Advances in Alzheimer's Disease, 3, 44-53. doi: 10.4236/aad.2014.31006.
References
[1] Alzheimer’s Disease International (2011) World Alzheimer Report 2011. The Benefits of Early Diagnosis and Intervention. Alzheimer’s Disease International, London. http://www.alz.co.uk/research/world-report-2011/ [2] Burns, A. and Iliffe, S. (2009) Alzheimer’s Disease. British Medical Journal, 338, 46-471.
http://dx.doi.org/10.1136/bmj.b46 [3] Hebert, L.E., Scherr, P.A., Bienias, J.L., Bennett, D.A. and Evans, D.A. (2003) Alzheimer disease in the US Population: Prevalence estimates Using the 2000 Census. Archives of Neurology, 60, 1119-1122. http://dx.doi.org/10.1001/archneur.60.8.1119 [4] Alzheimer Society of Canada (2012) Key Facts about Alzheimer’s Disease and Related Dementia-Prevalence Figures. Alzheimer Society of Canada, Toronto.
http://www.alzheimer.ca/english/disease/stats-intro.htm [5] Canadian Study of Health and Aging (1994) Canadian Study of Health and Aging: Study Methods and Prevalence of Dementia. Canadian Medical Association Journal, 150, 899-913. [6] Prince, M. and Jackson, J. (2009) Alzheimer’s Disease International: World Alzheimer Report.
http://www.alz.co.uk/research/world-report [7] deMoraes, S.R. and da Silva., L.S. (2009) An Evaluation of the Burden of Alzheimer Patients on Family Caregivers. Cadernos de Saúde Pública, 25, 1807-1815. [8] Schulz, R., Belle, S.H., Czaja S.J, McGinnis, K.A., Stevens, A. and Zhang, S. (2004) Long-Term Care Placement of Dementia Patients and Caregiver Health and Well-Being. The Journal of the American Medical Association, 292, 961-967. http://dx.doi.org/10.1001/jama.292.8.961 [9] Port, C.L., Zimmerman, S., Williams, C.S., Dobbs, D., Preisser, J.S. and Williams, S.W. (2005) Families Filling The Gap: Comparing Family Involvement for Assisted Living and Nursing Home Residents with Dementia. Gerontologist, 1, 87-95. [10] Zarit, S.H., Orr, N.K. and Zarit, J.M. (1985) The Hidden Victims of Alzheimer’s Disease: Families under Stress. New York University Press, New York. [11] Bolge, S.C., Doan, J.F., Kannan, H. and Baran, R.W. (2009) Association of Insomnia with Quality of Life, Work Productivity, and Activity Impairment. Quality of Life Research, 18, 415-422.
http://dx.doi.org/10.1007/s11136-009-9462-6 [12] Gaugler, J.E., Yu, F., Krichbaum, K. and Wyman, J.F. (2009) Predictors of Nursing Home Admission for Persons with Dementia. Medical Care, 47, 191-198. http://dx.doi.org/10.1097/MLR.0b013e31818457ce [13] Alzheimer’s Association and National Alliance for Care Giving (2004) Families Care: Alzheimer’s Disease Care Giving in the United States. www.alz.org [14] Hazzan, A.A., Ploeg, J., Shannon, H., Raina, P., Oremus, M. (2013) Association between Caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Protocol for a Systematic. Systematic Review, 13, 17. [15] World Health Organization (WHO) (1997) Measuring Quality of Life. WHOQOL. World Health Organization, Geneva. [16] Susniene, D. and Jurkauksa, A. (2009) The Concepts of Quality of Life and Happiness—Correlation and Differences. Engineering Economics. [17] McSweeny, A.J. and Creer, T.L. (1995) Health-Related Quality-Of-Life Assessment in Medical Care. Disease-a-Month, 41, 1-71. [18] Ware, J.E. and Sherbourne, C.D. (1992) The MOS 36-Item Short-Form Health Survey (SF-36) Conceptual Framework and Item Selection. Medical Care, 30, 473-483.
http://dx.doi.org/10.1097/00005650-199206000-00002 [19] EuroQol Group (1990) EuroQol—A New Facility for the Measurement of Health-Related Quality Of Life. The Euro Qol Group. Health Policy, 16, 199-208. http://dx.doi.org/10.1016/0168-8510(90)90421-9 [20] Saxena, S. and Orley, J. (1997) Quality of Life Assessment: The World Health Organization Perspective. European Psychiatry, 12, 263s-266s. http://dx.doi.org/10.1016/S0924-9338(97)89095-5 [21] Markowitz, J.S., Gutterman, E.M., Sadik, K. and Papadopoulos, G. (2003) Health-Related Quality of Life for Caregivers of Patients with Alzheimer Disease. Alzheimer Disease and Associated Disorders, 17, 209-214. http://dx.doi.org/10.1097/00002093-200310000-00003 [22] Bédard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A. and O’Donnell, M. (2001) The Zarit Burden Interview: A New Short Version and Screening Version. Gerontologist, 41, 652-657.
http://dx.doi.org/10.1093/geront/41.5.652 [23] Ferro, M.A. and Speechley, K.N. (2009) Depressive Symptoms among Mothers of Children with Epilepsy: A Review of Prevalence, Associated Factors, and Impact on Children. Epilepsia, 50, 2344-2354.
http://dx.doi.org/10.1111/j.1528-1167.2009.02276.x [24] Radloff, L.S. (1977) The CES-D Scale: A Self-Report Depression Scale for Research in the General Population. Applied Psychological Measurement, 1, 385-401.
http://dx.doi.org/10.1177/014662167700100306 [25] Niedhammer, I., David, S. and Degioanni, S. (2006) Association between Workplace Bullying and Depressive Symptoms in the French Working Population. Journal of Psychosomatic Research, 61, 251-259. http://dx.doi.org/10.1016/j.jpsychores.2006.03.051 [26] Teri, L., McCurry, S.M., Logsdon, R. and Gibbons, L.E. (2005) Training Community Consultants to Help Family Members Improve Dementia Care: A Randomized Controlled Trial. Gerontologist, 45, 802-811. http://dx.doi.org/10.1093/geront/45.6.802 [27] McCurry, S.M. and Teri, L. (1995) Sleep Disturbance in Elderly Caregivers of Dementia Patients. Clinical Gerontologist, 16, 51-66. http://dx.doi.org/10.1300/J018v16n02_05 [28] Higgins, J.P., Altman, D.G., Gøtzsche, P.C., Jüni, P., Moher, D., Oxman, A.D., Savovic, J., Schulz, K.F., Weeks, L., Sterne, J.A., Cochrane Bias Methods Group and Cochrane Statistical Methods Group. (2011) The Cochrane Collaboration’s Tool for Assessing Risk of Bias in Randomised Trials. British Medical Journal, 343, d5928. http://dx.doi.org/10.1136/bmj.d5928 [29] Cochrane Effective Practice and Organisation of Care Group Draft Risk of Bias Tool (2011) Wiley, Oxford. http://epoccochrane.org/epocresources-review-authors [30] Hartling, L., Bond, K., Harvey, K., Santaguida, P.L., Viswanathan, M. and Dryden, D.M. (2010) Developing and Testing a Tool for the Classification of Study Designs in Systematic Reviews of Interventions and Exposures. http://www.ncbi.nlm.nih.gov/books/NBK52670/pdf/TOC.pdf [31] The Cochrane Handbook for Systematic Reviews of Intervention. (2011) The GRADE Approach. Chapter 12.2.1. http://handbook.cochrane.org/chapter_12/12_2_1_the_grade_approach.htm [32] Moher, D., Liberati, A., Tetzlaff, J. and Altman, D.G. (2010) PRISMA Group: Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. International Journal of Surgery, 8, 336-341. http://dx.doi.org/10.1016/j.ijsu.2010.02.007 [33] Gitlin, L.N., Winter, L., Corcoran, M., Dennis, M.P., Schinfeld, S. and Hauck, W.W. (2003) Effects of the Home Environmental Skill-Building Program on the Caregiver-Care Recipient Dyad: 6-Month Outcomes from the Philadelphia REACH Initiative. Gerontologist, 43, 532-546.
http://dx.doi.org/10.1093/geront/43.4.532 [34] Guyatt, G.H., Oxman, A.D., Vist, G.E., Kunz, R., Falck-Ytter, Y., Alonso-Coello, P., Schünemann, H.J. and GRADE Working Group. (2008) GRADE: An Emerging Consensus on Rating Quality of Evidence and Strength of Recommendations. British Medical Journal, 336, 924-926.
http://dx.doi.org/10.1136/bmj.39489.470347.AD [35] Canadian Study of Health and Aging Working Group. (2000) The Incidence of Dementia in Canada. Neurology, 55, 66-73. http://dx.doi.org/10.1212/WNL.55.1.66 [36] Raina, P.S., Wolfson, C., Kirkland, S.A., Griffith, L.E., Oremus, M., Patterson, C., Tuokko, H., Penning, M., Balion, C.M., Hogan, D., Wister, A., Payette, H., Shannon, H. and Brazil, K. (2009) The Canadian Longitudinal Study on Aging (CLSA). Canadian Journal on Aging, 28, 221-229.
http://dx.doi.org/10.1017/S0714980809990055
[1] Alzheimer’s Disease International (2011) World Alzheimer Report 2011. The Benefits of Early Diagnosis and Intervention. Alzheimer’s Disease International, London. http://www.alz.co.uk/research/world-report-2011/ [2] Burns, A. and Iliffe, S. (2009) Alzheimer’s Disease. British Medical Journal, 338, 46-471.
http://dx.doi.org/10.1136/bmj.b46 [3] Hebert, L.E., Scherr, P.A., Bienias, J.L., Bennett, D.A. and Evans, D.A. (2003) Alzheimer disease in the US Population: Prevalence estimates Using the 2000 Census. Archives of Neurology, 60, 1119-1122. http://dx.doi.org/10.1001/archneur.60.8.1119 [4] Alzheimer Society of Canada (2012) Key Facts about Alzheimer’s Disease and Related Dementia-Prevalence Figures. Alzheimer Society of Canada, Toronto.
http://www.alzheimer.ca/english/disease/stats-intro.htm [5] Canadian Study of Health and Aging (1994) Canadian Study of Health and Aging: Study Methods and Prevalence of Dementia. Canadian Medical Association Journal, 150, 899-913. [6] Prince, M. and Jackson, J. (2009) Alzheimer’s Disease International: World Alzheimer Report.
http://www.alz.co.uk/research/world-report [7] deMoraes, S.R. and da Silva., L.S. (2009) An Evaluation of the Burden of Alzheimer Patients on Family Caregivers. Cadernos de Saúde Pública, 25, 1807-1815. [8] Schulz, R., Belle, S.H., Czaja S.J, McGinnis, K.A., Stevens, A. and Zhang, S. (2004) Long-Term Care Placement of Dementia Patients and Caregiver Health and Well-Being. The Journal of the American Medical Association, 292, 961-967. http://dx.doi.org/10.1001/jama.292.8.961 [9] Port, C.L., Zimmerman, S., Williams, C.S., Dobbs, D., Preisser, J.S. and Williams, S.W. (2005) Families Filling The Gap: Comparing Family Involvement for Assisted Living and Nursing Home Residents with Dementia. Gerontologist, 1, 87-95. [10] Zarit, S.H., Orr, N.K. and Zarit, J.M. (1985) The Hidden Victims of Alzheimer’s Disease: Families under Stress. New York University Press, New York. [11] Bolge, S.C., Doan, J.F., Kannan, H. and Baran, R.W. (2009) Association of Insomnia with Quality of Life, Work Productivity, and Activity Impairment. Quality of Life Research, 18, 415-422.
http://dx.doi.org/10.1007/s11136-009-9462-6 [12] Gaugler, J.E., Yu, F., Krichbaum, K. and Wyman, J.F. (2009) Predictors of Nursing Home Admission for Persons with Dementia. Medical Care, 47, 191-198. http://dx.doi.org/10.1097/MLR.0b013e31818457ce [13] Alzheimer’s Association and National Alliance for Care Giving (2004) Families Care: Alzheimer’s Disease Care Giving in the United States. www.alz.org [14] Hazzan, A.A., Ploeg, J., Shannon, H., Raina, P., Oremus, M. (2013) Association between Caregiver Quality of Life and the Care Provided to Persons with Alzheimer’s Disease: Protocol for a Systematic. Systematic Review, 13, 17. [15] World Health Organization (WHO) (1997) Measuring Quality of Life. WHOQOL. World Health Organization, Geneva. [16] Susniene, D. and Jurkauksa, A. (2009) The Concepts of Quality of Life and Happiness—Correlation and Differences. Engineering Economics. [17] McSweeny, A.J. and Creer, T.L. (1995) Health-Related Quality-Of-Life Assessment in Medical Care. Disease-a-Month, 41, 1-71. [18] Ware, J.E. and Sherbourne, C.D. (1992) The MOS 36-Item Short-Form Health Survey (SF-36) Conceptual Framework and Item Selection. Medical Care, 30, 473-483.
http://dx.doi.org/10.1097/00005650-199206000-00002 [19] EuroQol Group (1990) EuroQol—A New Facility for the Measurement of Health-Related Quality Of Life. The Euro Qol Group. Health Policy, 16, 199-208. http://dx.doi.org/10.1016/0168-8510(90)90421-9 [20] Saxena, S. and Orley, J. (1997) Quality of Life Assessment: The World Health Organization Perspective. European Psychiatry, 12, 263s-266s. http://dx.doi.org/10.1016/S0924-9338(97)89095-5 [21] Markowitz, J.S., Gutterman, E.M., Sadik, K. and Papadopoulos, G. (2003) Health-Related Quality of Life for Caregivers of Patients with Alzheimer Disease. Alzheimer Disease and Associated Disorders, 17, 209-214. http://dx.doi.org/10.1097/00002093-200310000-00003 [22] Bédard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A. and O’Donnell, M. (2001) The Zarit Burden Interview: A New Short Version and Screening Version. Gerontologist, 41, 652-657.
http://dx.doi.org/10.1093/geront/41.5.652 [23] Ferro, M.A. and Speechley, K.N. (2009) Depressive Symptoms among Mothers of Children with Epilepsy: A Review of Prevalence, Associated Factors, and Impact on Children. Epilepsia, 50, 2344-2354.
http://dx.doi.org/10.1111/j.1528-1167.2009.02276.x [24] Radloff, L.S. (1977) The CES-D Scale: A Self-Report Depression Scale for Research in the General Population. Applied Psychological Measurement, 1, 385-401.
http://dx.doi.org/10.1177/014662167700100306 [25] Niedhammer, I., David, S. and Degioanni, S. (2006) Association between Workplace Bullying and Depressive Symptoms in the French Working Population. Journal of Psychosomatic Research, 61, 251-259. http://dx.doi.org/10.1016/j.jpsychores.2006.03.051 [26] Teri, L., McCurry, S.M., Logsdon, R. and Gibbons, L.E. (2005) Training Community Consultants to Help Family Members Improve Dementia Care: A Randomized Controlled Trial. Gerontologist, 45, 802-811. http://dx.doi.org/10.1093/geront/45.6.802 [27] McCurry, S.M. and Teri, L. (1995) Sleep Disturbance in Elderly Caregivers of Dementia Patients. Clinical Gerontologist, 16, 51-66. http://dx.doi.org/10.1300/J018v16n02_05 [28] Higgins, J.P., Altman, D.G., Gøtzsche, P.C., Jüni, P., Moher, D., Oxman, A.D., Savovic, J., Schulz, K.F., Weeks, L., Sterne, J.A., Cochrane Bias Methods Group and Cochrane Statistical Methods Group. (2011) The Cochrane Collaboration’s Tool for Assessing Risk of Bias in Randomised Trials. British Medical Journal, 343, d5928. http://dx.doi.org/10.1136/bmj.d5928 [29] Cochrane Effective Practice and Organisation of Care Group Draft Risk of Bias Tool (2011) Wiley, Oxford. http://epoccochrane.org/epocresources-review-authors [30] Hartling, L., Bond, K., Harvey, K., Santaguida, P.L., Viswanathan, M. and Dryden, D.M. (2010) Developing and Testing a Tool for the Classification of Study Designs in Systematic Reviews of Interventions and Exposures. http://www.ncbi.nlm.nih.gov/books/NBK52670/pdf/TOC.pdf [31] The Cochrane Handbook for Systematic Reviews of Intervention. (2011) The GRADE Approach. Chapter 12.2.1. http://handbook.cochrane.org/chapter_12/12_2_1_the_grade_approach.htm [32] Moher, D., Liberati, A., Tetzlaff, J. and Altman, D.G. (2010) PRISMA Group: Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. International Journal of Surgery, 8, 336-341. http://dx.doi.org/10.1016/j.ijsu.2010.02.007 [33] Gitlin, L.N., Winter, L., Corcoran, M., Dennis, M.P., Schinfeld, S. and Hauck, W.W. (2003) Effects of the Home Environmental Skill-Building Program on the Caregiver-Care Recipient Dyad: 6-Month Outcomes from the Philadelphia REACH Initiative. Gerontologist, 43, 532-546.
http://dx.doi.org/10.1093/geront/43.4.532 [34] Guyatt, G.H., Oxman, A.D., Vist, G.E., Kunz, R., Falck-Ytter, Y., Alonso-Coello, P., Schünemann, H.J. and GRADE Working Group. (2008) GRADE: An Emerging Consensus on Rating Quality of Evidence and Strength of Recommendations. British Medical Journal, 336, 924-926.
http://dx.doi.org/10.1136/bmj.39489.470347.AD [35] Canadian Study of Health and Aging Working Group. (2000) The Incidence of Dementia in Canada. Neurology, 55, 66-73. http://dx.doi.org/10.1212/WNL.55.1.66 [36] Raina, P.S., Wolfson, C., Kirkland, S.A., Griffith, L.E., Oremus, M., Patterson, C., Tuokko, H., Penning, M., Balion, C.M., Hogan, D., Wister, A., Payette, H., Shannon, H. and Brazil, K. (2009) The Canadian Longitudinal Study on Aging (CLSA). Canadian Journal on Aging, 28, 221-229.
http://dx.doi.org/10.1017/S0714980809990055