Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes

K W Hepburn, J Tornatore, B Center, S W Ostwald
Journal of the American Geriatrics Society 2001, 49 (4): 450-7

OBJECTIVES: Family caregiving is an integral part of the care system for persons with dementing disorders, such as Alzheimer's disease. This study tested role-training intervention as a way to help family caregivers appreciate and assume a more clinical belief set about caregiving and thereby ameliorate the adverse outcomes associated with caregiving.

DESIGN: Training effectiveness was tested in a trial in which family care receiver dyads were randomly assigned to training beginning immediately or were placed in a wait-list control group and assigned to receive training in 5 to 6 months, following completion of data collection.

SETTING: A community-based 14-hour training program provided in seven weekly 2-hour sessions. The training program curriculum was built on a stress and coping theory base. Recruitment and randomization were ongoing. Programs were begun every 2 months over a two and one half-year period for a total of 16 programs.

PARTICIPANTS: Community health and social service agencies referred primary caregivers and at least one other family member of community-dwelling persons with dementia to participate.

MEASUREMENTS: Data reported in this paper were gathered from each participating family at entry to the study and 5 months later. Standard measures of beliefs about caregiving, burden, depression, and reaction to care receiver behavior were administered to caregivers. A standard measure of mental status was administered to the person with dementia and standardized instruments were used to gather information from caregivers concerning care receivers' behavior and abilities to perform activities of daily living (ADLs).

RESULTS: Data were analyzed from 94 caregiver/care receiver dyads with complete sets of data. Treatment and control caregivers and care receivers were similar at baseline, and care receivers in both groups declined similarly over the 5-month period. Significant within-group improvements occurred with treatment group caregivers on measures of beliefs about caregiving (P = .044) and reaction to behavior (P = .001). When outcomes were compared, treatment group caregivers were significantly different (in the expected direction) from those in the control group on measures of the stress mediator, beliefs (P = .025), and key outcomes, response to behavior (P = .019), depression (P = .040), and burden (P = .051). There was a significant positive association between the strengthened mediator, the caregivers' having less-emotionally enmeshed beliefs about caregiving roles and responsibilities, and the outcome, namely improvements in burden (P = .019) and depression (P = .007).

CONCLUSION: A caregiver training intervention focused on the work of caregiving and targeted at knowledge, skills, and beliefs benefits caregivers in important outcome dimensions. The results suggest the benefits of providing information, linkage, and role coaching to dementia family caregivers.

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