An Examination of Positive and Negative Dementia Caregiving Experiences

ABSTRACT

Objectives

We examined associations among three measures of caregiver experiences (i.e., positive aspects of caring [PAC], caregiver burden, and mutuality) in 228 dyads involving persons with dementia (PWD) and their informal caregivers. The associations between predisposing, enabling, and need factors and each of these three measures of caregiver experiences were also examined.

Methods

We used baseline data from a randomized controlled trial of a psychosocial intervention aimed at preventing aggression in PWD. Associations among PAC, caregiver burden, and mutuality were examined. The Behavioral Model of Health Services Utilization guided the selection of predisposing, enabling, and need components.

Results

Enabling characteristics (e.g., race/ethnicity, caregiver education and employment and PWD education) and most predisposing characteristics (e.g., caregiver age, PWD age, relationship type) were not associated with any caregiving experience measures. Need characteristics (e.g., levels of memory and functional impairment, behavioral problems, depression, pleasant events) were associated with the caregiving experience.

Conclusions

Bivariate correlations between PAC, caregiver burden, and mutuality were between −0.20 and −0.58. Predisposing, enabling, and need factors were differentially associated with outcomes, with need characteristics being most frequently associated with various aspects of caregiving.

Clinical implications

Assessment of both positive and negative aspects of caregiving is important. Particular attention to depression and interventions that improve depressive symptoms may increase PAC and mutuality and reduce caregiver burden.

KEYWORDS:

• Dementia
• informal care
• caregiver relationship
• caregiver burnout
• positive aspects of caregiving

Clinical implications

• Measuring caregiver burden may not be sufficient in and of itself to fully understand the caregiving experience.

• Inclusion of both positive and negative aspects of caregiving offers a more complete assessment of caregiving experiences and helps identify mutable factors for targeted interventions to improve the experiences of caregivers.

• Attention to reducing depression by increasing engagement in pleasant activities for PWD using evidence-based treatments might reduce the negative consequences of caregiving while enhancing PAC.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by National Institute of Nursing Research Grant no. 5R01NR014657 to Mark E. Kunik, MD, MPH, and partly supported by the use of facilities and resources of the Houston VA HSR&D Center for Innovations in Quality, Effectiveness and Safety (CIN13-413) and the South Central Mental Illness Research, Education and Clinical Center. The opinions expressed are those of the authors and not necessarily those of the Department of Veterans Affairs, the U.S. government, or Baylor College of Medicine.