Date Presented 04/05/19
OT interventions for informal caregivers of people with dementia were effective in improving burden, depression, and confidence to provide care currently and for the next six months. The interventions included illness education, training for transfers, organization, and exercise methods.
Primary Author and Speaker: Jillian Meidenbauer
Additional Authors and Speakers: Kaylee Lynch, Jennifer Thill, Lauren Gantz
Faculty Advisor: Machiko Tomita
PURPOSE: In 2017, 16.1 million informal caregivers (ICGs) provided 18.4 billion hours of unpaid care to people with dementia. ICGs of people with dementia experience high caregiver burden and depression, and worsening health. As care recipients (CR)’ cognition declines, ICGs’ negative psychological effects increase. Nearly 80% of older adults with dementia receive help with a daily personal care activity, but training for ICGs to support CRs’ activities of daily living (ADL) in the community hardly exists. The purpose of this study was to determine if the provision of individualized OT supports for ICGs would (1) reduce, caregiver burden, depression, and fatigue compared to ICGs who receive only education material, and (2) increase confidence in caregiving.
DESIGN: This is a pilot mixed method study using 20 ICGs of participants in three Programs of All-inclusive Care for the Elderly (PACEs) in Western New York. The quantitative part used a randomized controlled trial (RCT). The intervention was about three months, and assessments were conducted at baseline, 1.5, and 3 months. This study comprised 11 treatment ICGs and 9 controls.
METHOD: First, challenges were identified through a home interview and individualized OT solutions were delivered at ICGs’ or CRs’ homes by OT graduate students under the supervision of and suggestions by OTs and a gerontologist. Outcome measures were Global Deteriorations Scale (GDS) determining CRs’ cognitive level, Zarit Burden Interview (ZBI), and Center for Epidemiology Study-Depression, as well as confidence to provide care currently and for the next six months, measuring ICGs’ psychological and physical condition.
RESULTS: The two groups were comparable (p>.05) in all demographic characteristics. However, initial GDS for CRs was much worse for the treatment group (p=.016); therefore, initial and 3 and 6 month assessments showed the treatment group was worse than the control group for most outcome measures. At 3 months, after adjusting to the initial difference, the treatment was significantly better for depression (p=.036) and mental fatigue (p=.011). For confidence to provide care currently, the treatment was more confident than the control group (p=.017). The difference was even wider for confidence to provide care for the next 6 month (p<.001). At 1.5 months, no measures were significantly different between the two groups. Caregiver burden gradually improved for the treatment and worsened for the control group, and at 3 months, these groups’ ZBI scores were similar. The same pattern was found for physical fatigue.
Regarding OT supports, 16 tailored supports were provided to 11 ICGs. Eleven supports (68.8%) were accepted and utilized during the study period, and 9 supports were very successful (81.8%) and 1 each (9%) was successful and somewhat successful.
CONCLUSION: For both groups, CRs’ cognition and functional status declined significantly at 3 months; despite this, the ICGs in the treatment group improved in all measures. We conclude that individualized OT supports were effective in reducing negative psychological caregiving impacts while increasing positive caregiving impacts. Education only interventions were somewhat effective for about 1.5 months, but without OT interventions, the effects faded away at 3 months.
Limitations of the study were a small sample size and difficulty separating causes of the success between the intervention and personal attention and interaction that ICGs received. In addition, the nature of ICGs’ challenges will change over time. We suggest large RCTs with a longer intervention period, incorporating innovative ideas for efficient and continuous ICG support.
References
Austrom, M. G., & Lu, Y. (2009). Long term caregiving: helping families of persons with mild cognitive impairment cope. Current Alzheimer Research, 6 (4), 392-398.
Kamiya, M., Sakurai, T., Ogama, N., Maki, Y., & Toba, K. (2014). Factors associated with increased caregivers’ burden in several cognitive stages of Alzheimer’s disease. Geriatrics & Gerontology International, 14(2), 42-55.
Etters, L., Goodall, D., & Harrison, B.E. (2007). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423-428.
