Quality of informal care for persons with dementia: dimensions and correlates

Abstract

Objectives: The majority of persons with dementia live in the community where most of their care is provided by family members. We aimed to expand our limited knowledge about the styles of high-quality care, such as person-centered care, and poor-quality care adopted by these informal caregivers and the characteristics of those who provide better care.

Method: We conducted a mail survey of 148 family caregivers. Caregiving styles were measured with items from existing scales that had not been analyzed together before. Factor analysis of these items was used to identify styles of caregiving, and structural equation modeling was used to identify their relationships with caregiver and care-recipient characteristics.

Results: Three high quality-of-care factors (personalized, respectful, and compensatory) and three poor quality-of-care factors (punitive, controlling, and withdrawing) were found. The personality traits of agreeableness, openness, conscientiousness, and neuroticism were related to higher quality of care, and the trait of extraversion was related to poorer quality of care. Wishful coping – an avoidance/escape strategy – was linked to poorer quality of care.

Conclusion: We discovered new dimensions of quality of care, some consistent with person-centered care and some antithetical to this model, and we identified for the first time caregiver personality traits and coping strategies associated with better quality of care. These results may be useful in targeting caregiver interventions to benefit both caregivers and care recipients.

Keywords:

• person-centered care
• dementia
• Alzheimer's disease
• personality traits
• avoidance/escape coping

Acknowledgements

This work was supported by the Alzheimer's Association (grant number IIRG-08-91014, 11/1/2008–10/31/2011). Supplemental financial support was graciously provided by Alan Lerner, MD, Director, Memory and Cognition Center, University Hospitals of Cleveland Case Medical Center. We thank project managers Linda Rechlin, Nancy Catalini, and Vanessa Farro for their outstanding assistance with recruitment, instrumentation, data entry, and other tasks. We are also grateful to the Alzheimer's Associations of Cleveland and Akron–Canton–Youngstown, and the Memory and Cognition Center, University Hospitals Case Medical Center for their assistance with recruitment.