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.
Similar content being viewed by others
REFERENCES
Aaronson, N. K. (1988). Quantitative issues in health-related quality of life assessment. Health Policy 10: 217–230.
Bergsma, J., and Engel, G. (1988). Quality of life: Does measurement help? Health Policy 10: 267–279.
Berry, R. A., and Murphy, J. F. (1995). Well-being of caregivers of spouses with Parkinson’s disease. Clin. Nurs. 4(4): 373–386.
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.
Campbell, A., Converse, P., and Rogers, W. L. (1976). The Quality of American Life: Perceptions, Evaluations and Satisfactions, Russell Sage, New York.
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.
Chenoweth, B., and Spencer, B. (1986). Dementia: The experience of family caregiving. Gerontologist 26: 267–272.
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.
Clipp, E. C., and George, L. K. (1990). Psychotropic drug use among caregivers of patients with dementia. J. Am. Geriatr. Soc. 38: 227–235.
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.
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.
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.
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.
Ellgring, H., Seiler, S., Perleth, B., et al. (1993). Psychosocial aspects of Parkinson’s disease. Neurology 43: 641–644.
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.
Felce, D., and Perry, J. (1995). Quality of life: Its definition and measurement. Res. Dev. Disabil. 16: 51–74.
Fiore, J., Becker, J., and Coppel, D. B. (1983). Social network interactions: A buffer or a stress? Am. J. Community Psychol. 11: 423–439.
Flanagan, J. C. (1982). Measurement of quality of life: Current state of the art. Arch. Phys. Med. Rehabil. 63: 56–59.
Gallagher, D., Rose, J., Rivera, P., Lovett, S., and Thompson, L. W. (1989). Prevalence of depression in family caregivers. Gerontologist 29: 449–456.
Gallo, J. J. (1990). Depression in caregivers. J. Fam. Pract. 30(4): 430–436.
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.
George, L., and Gwyther, L. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist 26: 253–259.
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.
Glozman, J. M. (2004). Communication disorders and personality. Kluwer/Plenum, New York.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Lazarus, R. S., and Folkman, S. (1984). Stress, Appraisal and Coping, Springer, New York.
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.
Luria, A. R. (1973). The working brain. An Introduction to Neuropsychology, Penguin Books, London.
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.
Monahan, D. J., and Hooker, K. (1997). Caregiving and social support in two illness groups. Soc. Work 42(3): 278–287.
Morycz, R. K. (1985). Caregiving strain and the desire to institutionalize family members with Alzheimer disease. Res. Aging 7: 329–361
Murrell, R. (1999). Quality of life and neurological illness: A review of the literature. Neuropsychol. Rev. 9(4): 209–230.
Novak, M., and Guest, C. (1989). Application of a multidimensional caregiver burden inventory. Gerontologist 29: 798–803.
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.
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.
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.
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.
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.
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.
Pruchno, R., and Potashnik, S. (1989). Caregiving spouses: Physical and mental health in perspective. J. Am. Geriatr. Soc. 37: 697–705.
Salek, S. (Ed.) (2004). Compedium of Quality of Life Instruments, Vol. 6 (pp. 1–5). Euromed Communications, UK.
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.
Schipper, H. (1990). Guidelines and caveats for quality of life measurement in clinical practice and research. Oncology 4: 51–57.
Schulz, R., Visintainer, P., and Williamson, G. M. (1990). Psychiatric and physical morbidity effects of caregiving. J. Gerontol. Psychol. Sci. 45: 181–191.
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.
Shklovsky, V. M. (1982). Social psychological aspects of aphasics’ rehabilitation. J. Neuropatologii i psychiatrii im. Korsakova 82(2): 248–253 (Russian).
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.
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.
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.
Tuokko, H., and Hadjistavropoulos, Th. (1998). An Assessment Guide to Geriatric Neuropsychology. Lawrence Erlbaum Assoc, NJ.
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.
Veenhoven, R. (1991). Is happiness relative? Social Indicators Research 24: 1–34.
Vitaliano, P. P., Russo, J., Young, H., Becker, J., and Maiuro, R. D. (1991). The screen for caregiver burden. Gerontologist 31: 76–83.
Wallhagen, M. I., and Brod, M. (1997). Perceived control and well-being in Parkinson disease. West J. Nurs. 19(1): 11–25.
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.
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.
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.
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.
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.
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.
Zautra, A., and Goodhart, D. (1984). Quality of life indicators: A review of the literature. Community Ment. Health Rev. 4: 2–10.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Glozman, J.M. Quality of Life of Caregivers. Neuropsychol Rev 14, 183–196 (2004). https://doi.org/10.1007/s11065-004-8158-5
Issue Date:
DOI: https://doi.org/10.1007/s11065-004-8158-5