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Quality of Life of Caregivers

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Abstract

This article is a descriptive analysis of various features of the quality of life (QoL) of the caregivers in different pathological conditions. Definitions of the concept of QoL, caregiver goals and burdens, caregiver stress and coping with factors that could contribute to or impact the QoL in caregivers are discussed both through a review of literature and an analysis of empirical evidences. The QoL in caregivers of patients with Parkinson’s disease is also discussed. An original Scale of QoL of Caregivers is described and compared with other existing measures. The concepts of patient–caregiver dyad in research and in interventions is stressed.

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REFERENCES

  • Aaronson, N. K. (1988). Quantitative issues in health-related quality of life assessment. Health Policy 10: 217–230.

    Google Scholar 

  • Bergsma, J., and Engel, G. (1988). Quality of life: Does measurement help? Health Policy 10: 267–279.

    Google Scholar 

  • Berry, R. A., and Murphy, J. F. (1995). Well-being of caregivers of spouses with Parkinson’s disease. Clin. Nurs. 4(4): 373–386.

    Google Scholar 

  • Borthwick-Duffy, S. A. (1992). Quality of life and quality of care in mental retardation. In: Rowitz, L. (ed.), Mental Retardation in the Year 2000 (pp. 52–66), Springer-Verlag, New York.

    Google Scholar 

  • Campbell, A., Converse, P., and Rogers, W. L. (1976). The Quality of American Life: Perceptions, Evaluations and Satisfactions, Russell Sage, New York.

    Google Scholar 

  • Carter, J. H., Stewart B. J., Archbold, P. G., et al. (1998). Living with a person who has Parkinson’s disease: The spouse’s perspective by stage of disease. Mov. Dis. 13(1): 20–28.

    Google Scholar 

  • Chenoweth, B., and Spencer, B. (1986). Dementia: The experience of family caregiving. Gerontologist 26: 267–272.

    Google Scholar 

  • Clarke, C. E., Zobkiw, R. M., and Gullaksen, E. (1995). Quality of life and care in Parkinson’s disease. Br. J. Clin. Pract. 49(6): 288–293.

    Google Scholar 

  • Clipp, E. C., and George, L. K. (1990). Psychotropic drug use among caregivers of patients with dementia. J. Am. Geriatr. Soc. 38: 227–235.

    Google Scholar 

  • Cohen, D., and Eisdorfer, C. (1988). Depression in family members carrying for a relative with Alzheimer’s disease. J. Am. Geriatr. Soc. 36: 885–889.

    Google Scholar 

  • Coppel, D. B., Burton, C., Becker, J., and Fiore, J. (1985). The relationship of cognition, associated with coping reactions to depression in spousal caregivers of Alzheimer’s disease patients. Cogn. Ther. Res. 9: 253–266.

    Google Scholar 

  • Delmling, G. T., and Bass, D. M. (1986). Symptoms of mental impairment among elderly adults and their effects on family caregivers. J. Gerontol. 41: 778–784.

    Google Scholar 

  • Drinka, T. J., Smith, J., and Drinka, P. J. (1987). Correlates of depression and burden for informal caregivers of patients in geriatrics referral clinic. J. Am. Geriatr. Soc. 35: 522–525.

    Google Scholar 

  • Ellgring, H., Seiler, S., Perleth, B., et al. (1993). Psychosocial aspects of Parkinson’s disease. Neurology 43: 641–644.

    Google Scholar 

  • Fahn, S., and Elton, R. (1987). Unified Parkinson’s disease rating scale. In: Fahn, S., Marsden, C., and Calne, D. (eds.), Recent Development in Parkinson’s Disease (pp. 153–163), Florran Park, New York.

    Google Scholar 

  • Felce, D., and Perry, J. (1995). Quality of life: Its definition and measurement. Res. Dev. Disabil. 16: 51–74.

    Google Scholar 

  • Fiore, J., Becker, J., and Coppel, D. B. (1983). Social network interactions: A buffer or a stress? Am. J. Community Psychol. 11: 423–439.

    Google Scholar 

  • Flanagan, J. C. (1982). Measurement of quality of life: Current state of the art. Arch. Phys. Med. Rehabil. 63: 56–59.

    Google Scholar 

  • Gallagher, D., Rose, J., Rivera, P., Lovett, S., and Thompson, L. W. (1989). Prevalence of depression in family caregivers. Gerontologist 29: 449–456.

    CAS  PubMed  Google Scholar 

  • Gallo, J. J. (1990). Depression in caregivers. J. Fam. Pract. 30(4): 430–436.

    Google Scholar 

  • Gayle, E., McGinnis, B., Marimae, L., et al. (1986). Program evaluation of physical medicine and rehabilitation departments using self report Barthel. Arch. Phys. Med. Rehabil. 67: 123–125.

    Google Scholar 

  • George, L., and Gwyther, L. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist 26: 253–259.

    Google Scholar 

  • Glozman, J. M. (1991). Social rehabilitation in brain damaged patients. In: Forchhammer, H. (ed.), Luria Lectures. Soviet Contributions of 1990 (pp. 42–62), Hans Reitsels Forlaf, Copenhagen.

    Google Scholar 

  • Glozman, J. M. (2004). Communication disorders and personality. Kluwer/Plenum, New York.

    Google Scholar 

  • Glozman, J. M., Bicheva, K. G., and Fedorova, N. V. (1997). Scale of quality of life of care-givers (SQLC). J. Neurol. 245(5): 539–541.

    Google Scholar 

  • Greene, J. G., Smith, R., Gardiner, M., and Timbury, G. (1982). Measuring behavioral disturbance of elderly demented patients in the community and its effect on relatives: A factor analytic study. Age and aging 11: 121–126.

    Google Scholar 

  • Haley, W. E., Levine, E. G., Brown, S. L., Berry, J. W., and Hughes, G. H. (1987). Psychological, social and health consequences of caring for a relative with senile dementia. J. Am. Geriatr. Soc. 35: 405–411.

    Google Scholar 

  • Harper, A. C., Harper, D. A., Chambers, L. W., Cino, P. M., and Singer, J. (1986). An epidemiological description of physical, social and Psychological problems in multiple sclerosis. J. Chronic Dis. 39: 305–310.

    Google Scholar 

  • Joyce, C. R. (1994). Requirements for the assessment of individual quality of life. In: McGee, H., and Bradley, C. (eds.), Quality of Life Following Renal Failure: Psychological Challenges Accompanying High Technology Medicine (pp. 43–54), Hardwood Academic Publishers, Switzerland.

    Google Scholar 

  • Irwin, M., and Patterson, T. L. (1994). Neuroendocrine and neural influences on stress-induced suppression of immune function. In: Light, E., Niederehe, G., and Lebowitz, B. D. (eds.), Stress Effects on Family Caregivers of Alzheimer’s Patients (pp. 76–92), Springer Publishing Company, New-York.

    Google Scholar 

  • Kiecolt-Glaser, J. K., and Glaser, R. (1994). Caregivers, mental health and immune function. In: Light, E., Niederehe, G., and Lebowitz, B. D. (eds.), Stress Effects on Family caregivers of Alzheimer’s Patients (pp. 64–76), Springer Publishing Company, New-York.

    Google Scholar 

  • Kinney, J. M., and Parris-Stephens, M. A. (1989). Caregiving hassles scale: Assessing the daily hassles of caring for a family member with dementia. Gerontologist 29: 328–332.

    CAS  PubMed  Google Scholar 

  • Kinsella, G., and Duffy, E. (1978). The spouse of the aphasic patient. In: Lebrun, G., and Hoops, R. (eds.), The Management of Aphasia (pp. 26–49), Swets and Zeitlinger, Amsterdam.

    Google Scholar 

  • Kovyazina, M. S. (1994). Factors Determining Social Readaptation of Patients with Cognitive Disturbances due to a Brain Tumor or Vascular Disorder. Doctoral Dissertation. Moscow University (Russian).

  • Lawton, M. P. (1994). Broad-spectrum service program effect on caregivers. In: Light, E., Niederehe, G., and Lebowitz, B. D. (eds.), Stress Effects on Family caregivers of Alzheimer’s Patients (pp. 138–155), Springer Publishing Company, New-York.

    Google Scholar 

  • Lazarus, R. S., and Folkman, S. (1984). Stress, Appraisal and Coping, Springer, New York.

    Google Scholar 

  • Lomas, J., Piakard, L., and Mohide, A. (1987). Patient vs. clinician item generation of quality of life measures. The case of language disabled adults. Med. Care 25: 764–769.

    Google Scholar 

  • Luria, A. R. (1973). The working brain. An Introduction to Neuropsychology, Penguin Books, London.

    Google Scholar 

  • Martinez-Martin, P. (1997). An introduction to the concept “Quality of Life in Parkinson’s disease”. In: Abstract book. Pan-European Symposium: Quality of Life in Parkinson’s Disease (p. 6), Marbella, Spain.

  • Martinez-Martin, P., Guerrero, M., Frades, B., Fontan, C., and Glozman, J. (1998). Quality of life of caregivers: A new perspective on the consequences of Parkinson’s disease. Mov. Disord. 13(2): 63.

    Google Scholar 

  • Monahan, D. J., and Hooker, K. (1997). Caregiving and social support in two illness groups. Soc. Work 42(3): 278–287.

    Google Scholar 

  • Morycz, R. K. (1985). Caregiving strain and the desire to institutionalize family members with Alzheimer disease. Res. Aging 7: 329–361

    Google Scholar 

  • Murrell, R. (1999). Quality of life and neurological illness: A review of the literature. Neuropsychol. Rev. 9(4): 209–230.

    Google Scholar 

  • Novak, M., and Guest, C. (1989). Application of a multidimensional caregiver burden inventory. Gerontologist 29: 798–803.

    Google Scholar 

  • Oleson, M., Heading, C., Shadick, K., and Bistodeau, J. A. (1994). Quality of life in long stay institutions in England: Nurse and resident perceptions. J. Adv. Nurs. 20: 23–32.

    Google Scholar 

  • O’Reilly, F., Finnan, F., Allwright, S., Smith, G. D., and Ben-Shlomo, Y. (1996). The effects of caring for a spouse with Parkinson’s disease on social, psychological and physical well-being. Br. J. Clin. Pract. 46(410): 507–512.

    Google Scholar 

  • Pearlin, L. I. (1994). Conceptual strategies for the study of caregiver stress. In: Light, E., Niederehe, G., and Lebowitz, B. D. (eds.), Stress Effects on Family caregivers of Alzheimer’s Patients (pp. 3–25), Springer Publishing Company, New-York.

    Google Scholar 

  • Pearlin, L. I., Mullan, J. T., Semple, S. J., and Skaff, M. W. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 34: 583–594.

    Google Scholar 

  • Peto, V., Jenkinson, C., Fitzpatrick, R., and Greenhall, R. (1995). The development and validation of a short measure of functioning and well being for individuals with Parkinson’s disease. Qual. Life Res. 4: 241–148.

    Google Scholar 

  • Phillips, L. R. (1993). The role of nursing in care of the elderly. In: Lieberman, F., and Collen, M. (eds.), Aging in Good Health. A Quality of Lifestyle for the Later Years (pp. 115–129), Plenum Press, New York.

    Google Scholar 

  • Pruchno, R., and Potashnik, S. (1989). Caregiving spouses: Physical and mental health in perspective. J. Am. Geriatr. Soc. 37: 697–705.

    Google Scholar 

  • Salek, S. (Ed.) (2004). Compedium of Quality of Life Instruments, Vol. 6 (pp. 1–5). Euromed Communications, UK.

    Google Scholar 

  • Schalock, R. L. (1996). The concept of quality of life and its current applications in the field of mental retardation/developmental disabilities. In: Goode, D. A. (ed.), Quality of Life for Persons with Disabilities: International Perspectives and Issues (pp. 266–284), Brookline Books, Cambridge, MA.

    Google Scholar 

  • Schipper, H. (1990). Guidelines and caveats for quality of life measurement in clinical practice and research. Oncology 4: 51–57.

    Google Scholar 

  • Schulz, R., Visintainer, P., and Williamson, G. M. (1990). Psychiatric and physical morbidity effects of caregiving. J. Gerontol. Psychol. Sci. 45: 181–191.

    Google Scholar 

  • Schulz, R., and Williamson, G. M. (1994). Health effects on caregiving: Prevalence of mental and physical illness in Alzheimer’s caregivers. In: Light, E., Niederehe, G., and Lebowitz, B. D. (eds.), Stress Effects on Family caregivers of Alzheimer’s Patients (pp. 38–64), Springer Publishing Company, New-York.

    Google Scholar 

  • Shklovsky, V. M. (1982). Social psychological aspects of aphasics’ rehabilitation. J. Neuropatologii i psychiatrii im. Korsakova 82(2): 248–253 (Russian).

    Google Scholar 

  • Silverstone, B. (1993). Families of the aged. An overview of family caregiving. In: Lieberman, F., and Collen, M. (eds.), Aging in Good Health. A Quality of Lifestyle for the Later Years (pp. 149–164), Plenum Press, New-York.

    Google Scholar 

  • Snyder, B., and Keefe, K. (1985). The unmet needs of family caregivers for frail and disabled adults. Social Work and Health Care 10: 1–14.

    Google Scholar 

  • Stuifbergen, A. K. (1995). Health-promoting behaviors and quality of life among individuals with multiple sclerosis. Sch. Inq. Nurs. pract. An Int. J. 9: 31–50.

    Google Scholar 

  • Tuokko, H., and Hadjistavropoulos, Th. (1998). An Assessment Guide to Geriatric Neuropsychology. Lawrence Erlbaum Assoc, NJ.

    Google Scholar 

  • Turner, R. J. (1983). Direct, indirect and moderating effects of social support on psychological distress and associated conditions. In: Kaplan, H. B. (ed.), Psychological Stress (pp. 105–155), Academic Press, New-York.

    Google Scholar 

  • Veenhoven, R. (1991). Is happiness relative? Social Indicators Research 24: 1–34.

    Google Scholar 

  • Vitaliano, P. P., Russo, J., Young, H., Becker, J., and Maiuro, R. D. (1991). The screen for caregiver burden. Gerontologist 31: 76–83.

    Google Scholar 

  • Wallhagen, M. I., and Brod, M. (1997). Perceived control and well-being in Parkinson disease. West J. Nurs. 19(1): 11–25.

    Google Scholar 

  • Whetten-Goldstein, K., Sloan, F., Kulas, E., Cutson, T., and Schenkman, M. (1997). The burden of Parkinson’s disease on society, family and the individual. J. Am. Geriatr. Soc. 45(7): 844–849.

    Google Scholar 

  • Woodend, A. K., Nair, R. C., and Tang, A. S.-L. (1997). Definition of quality of life from a patient vs. health care professional perspective. Int. J. Rehabil. Res. 20: 71–80.

    Google Scholar 

  • World Health Organization (WHO). (1947). Constitution of the World Health Organization, Geneva, Switzerland.

  • Wright, L. K., Clipp, E. C., and George, L. K. (1993). Health consequences of caregiver stress. Med. Exerc. Nutr. Health 2: 181–195.

    Google Scholar 

  • Zarit, S. H., Reever, K. E., and Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feeling of burden. Gerontologist 20: 649–655.

    Google Scholar 

  • Zarit, S. H., Todd, P. A., and Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 26(3): 260–266.

    Google Scholar 

  • Zarit, S. H., and Zarit, J. M. (1982). Families under stress: Interventions for caregivers of senile dementia patients. Psychother. Theory, Res. Pract. 19: 461–471.

    Google Scholar 

  • Zautra, A., and Goodhart, D. (1984). Quality of life indicators: A review of the literature. Community Ment. Health Rev. 4: 2–10.

    Google Scholar 

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Correspondence to Janna M. Glozman.

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Glozman, J.M. Quality of Life of Caregivers. Neuropsychol Rev 14, 183–196 (2004). https://doi.org/10.1007/s11065-004-8158-5

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