Fall 2021 Newsletter
Article published in the Journal of Patient Experience: May 19, 2021. Caregiver Burden: Caregiving Workshops Have a Positive Impact on Those Caring for Individuals with Dementia in Arkansas. doi.org/10.1177/23743735211018085
Summarized by the original authors: Robin E. McAtee, PhD, RN; Laura Spradley, MS; Leah Tobey, PT, DPT, MBA; Whitney Thomasson, MAP; Gohar Azhar, MD; Cynthia Mercado, EMBA, MA (University of Arkansas for Medical Sciences).
Millions of Americans live with dementia. Caregivers of this population provide countless hours of multifaceted, complex care that frequently cause unrelenting stress which can result in immense burden. However, it is not fully understood what efforts can be made to reduce the stress among caregivers of persons with dementia (PWD). Therefore, the aim of this pretest–posttest designed study was to evaluate changes in caregiver burden after providing an educational intervention to those caring for PWD in Arkansas.
The data collection tool, the short ZBI (ZBI-12) consists of 12 questions in 2 main domains, personal strain and role strain and 4 subscales of sacrifice/strain, inadequacy, embarrassment/anger, and loss of control. Scoring of the item responses are based on a 5-point Likert-type scale ranging from 0 = never, 1 = rarely, 2 = sometimes, 3 = quite frequently, and 4 = nearly always. A cumulative score of 48 is possible and the higher scores represent higher feelings of burden. The ZBI-12 classifies cumulative scores 0 to 10 as “no to mild burden,” 10 to 20 as “mild to moderate burden,” and scores above 20 as “high burden.” The ZBI-12 was chosen for this study since it produces comparable results to those of the full version and leads to easier administration and completion of the questionnaire.
Participants to dementia caregiver workshops that are offered across Arkansas were invited to participant in the survey study. After the participants completed the pretest, they attended the workshop. The caregiver dementia workshop is a half-day workshop offered throughout rural Arkansas and covers many facets of dementia and caregiving. It begins with a review of dementia and Alzheimer’s disease and then moves to discuss the complexity and multifaceted aspects of caregiving and why it can be a hidden burden. Basic rules of caregiving are reviewed and time is spent in assisting the participants to understand the changes in physical functions and behaviors that occur with a PWD. They are taught various techniques about how to respond or adjust to the altered behaviors and needs of the PWD and time is spent role playing various verbal and physical communication approaches.
They are also given information about expectations regarding how they may feel as a caregiver, details about caregiver stress, and the importance of self-care. They are provided with tips about how to manage each of their roles, and how to care for themselves. Ample time is also allowed to discuss alternative options for caregiving such as respite, paid caregivers, residential dementia specialty units, and nursing homes. They are provided with printed and virtual resources to refer to later.
The participants were contacted 45-60 days via phone after their workshop to complete the post test. Matched pre- and posttest survey (ZBI) data from 41 respondents were used for the analysis. Eighty-three percent were women, and the ages ranged from 30 to 79 years. Twenty-seven percent (n = 11) were 50 to 59 years old and a few (12%, n = 5) were younger than 50 years. More than a third of the respondents (68%, n = 28) identified as white/Caucasian, 20% (n = 8) as African-American/black, and 12% (n = 5) were of various other ethnicities.
Knowledge and confidence level: After attending the workshop, the participants increased both their levels of knowledge and confidence in caregiving. Comparisons of the pretest versus posttest (mean ± standard deviation) for the knowledge level rose from 2.78 ± 0.79 to 3.98 ± 0.65 and for the confidence level from 3.02 ± 0.91 to 4.02 ± 0.72. Likewise, the paired samples t test showed a significant increase in the posttest means for both the caregiver’s knowledge level, t(40) = −7.61, P = .001, α = 0.95, and confidence level, t(40) = −5.845, P = 0.001, α = 0.95. The cohen’s d values indicated a large effect size in the 2 variables: knowledge (d = 1.656) and confidence (d = 1.218) suggesting that participation in the workshop was beneficial to the improvement of these 2 caregiving attributes.
For the pretest, the ZBI total scores ranged from 7 to 47, while the posttest scores ranged from 4 to 31. The higher ZBI total scores in the pretest suggested the participants’ higher family caregiver burden perception. In contrast, the lower posttest scores after the workshop indicated an improvement and a positive effect on the participant’s family caregiver burden perception. Similarly, the paired samples t test scores showed a statistically significant change between the pretest and posttest values, t(38) = 6.97, P = .0001, α = 0.95, of the ZBI total perception score means. This change was also evident in the large effect size of the Cohen’s d = 0.78. In 6 of the 12 statements asked in the ZBI-12 survey, participants indicated statistically significant improvements on the following subscales: 2 each for the sacrifice/strain and inadequacy subscale and 1 each for the embarrassment/anger and loss of control subscale.
Finally, although caregiver burden is described in many ways, it is basically the mental, emotional, and physical state of exhaustion when caring for someone else. A caregiver can begin the day or week being positive and upbeat but after a while, they can become depressed and even apathetic not just about their own personal health but the health of their loved one as well. The work is hard and seemingly never ending. The stress of spending their time, energy, and money providing care takes a monumental toll on the most dedicated caregiver. They need help. As has been previously demonstrated in studies of those individuals caring for a PWD, interventions including educating the caregivers have been shown to increase caregiver knowledge, decrease depression and improve their moods, reduce stress, and even delaying nursing home placement for the PWD (1, 2). This study showed how education can decrease caregiver burden, so we at the AGEC want to urge providers to also care for the caregiver. Talk to them and see what tools they need to help them adapt. Explore the available resources in your geographic area (and online) and share with the families, it really does help!
- Selwood, A, Johnston, K, Katona, C, Lyketsos, C, Livingston, G. A systematic review of the effect of psychological interventions on family caregivers of people with dementia. J Affect Disord. 2007;101:75–89.
- Pinquart, M, Sorensen, S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006;18:577–95. doi:10.1017/S1041610206003462