October 22, 2008

Caregivers of Older Clients with Severe Mental Illness: A Look at Perception of Burdens and Rewards

Principal Investigator:  Sherry Cummings, PhD

This study included caregivers of older clients (55 years +) who had been diagnosed with major depression, bipolar disorder, schizophrenia or schizoaffective disorder. Caregivers were recruited through clients attending Centerstone and a community mental health center in Alabama. Its results suggested that caregiver burden was associated with increased patient symptoms, increased needs of the patient, and decreased social support. Its results also suggested that a greater experience of the presence of God, decreased client symptoms, and being female were associated with caregiver rewards. One surprise from this study was that a higher family income actually was associated with a greater caregiver burden. This might be related to the families being eligible for less community assistance and support.

The act of caregiving for older adults with severe mental illness can be as simple as helping to shop and doing laundry, or as complex and time-consuming as providing transportation, managing money and medications, and caring for the person’s bathing, grooming and dressing needs. The same needs a person with schizophrenia or bipolar has at age 20 are not the same needs as they have at 55, 65 or 87. Adding on the factor of severe mental illness to the same needs that all adults face as they age gives another layer of complexity to caregiving. This can create a "double demand for care," as mental disability and illness combines with physical disability and illness (Cummings, 2008, p. 56).

A previous study suggested that family caregiver rewards were increased with providing increased care (Prouchno et al., 1997). The results from this research study contradict that conclusion. The researchers found that the more care needed, the more likely that caregivers would feel burdened. One explanation for this contradiction may be that Prouchno’s study looked specifically only at mothers of schizophrenics.  In this study of older adults with severe mental illness, there were no parental caregivers. Forty percent of the caregivers were adult children of the patient, and the next largest group of caregivers was siblings. The people cared for also had a diversity of diagnoses, which could affect the caregiver relationship.

Most of the caregivers who were in this study did not feel burdened by most of the things that they did to help their relative. Over 80% of people said that they felt no burden from shopping, cooking, doing laundry, or providing transportation or help with money management. The most burden expressed by caregivers came from tasks that involved giving personal physical care – grooming, bathing and dressing.

In spite of the amount of help provided most caregivers reported experiencing significant rewards from their caregiving activities. Caregiver rewards were correlated to several factors – including feeling appreciated for their work and having contact with the patient’s mental health professionals.


References
Cummings, S.M. & MacNeil, G. (2008). Caregivers of older clients with severe mental illness: perceptions of burdens and rewards. Families in Society: The Journal of Contemporary Social Services.  89(1): 51-59.