105 Perceptions of Caregiving and Family Caregivers’ Desires to Institutionalize

Faculty Mentor: Rebecca Utz (Sociology, University of Utah)

Introduction

Family caregivers provide unpaid care and support for older adults or chronically ill or disabled family members. With limitations of long-term health services including a lack of healthcare workers, caregivers prevent the healthcare system from being overburdened. Due to an aging population with overall worse health, caregivers are increasingly crucial to the healthcare system (Hoffman and Zucker, 2016 & Centers for Disease Control and Prevention [CDC], 2019). For instance, one of the largest groups provide care to those with Alzheimer’s Disease and Related Dementias, with over 16 million family caregivers providing more than 17 billion hours of unpaid care (CDC, 2023).

Although family caregivers often express positive perceptions of caregiving, such as meaning, satisfaction, and closer interpersonal relationships with the care recipient, caregivers also face immense burden and stress, which can lead to worsened mental and physical health compared to non-caregivers of the same age (CDC, 2019 & Schulz and Sherwood, 2008). Furthermore, there is a lack of financial, mental, and physical support for caregivers (Schulz and Sherwood, 2008). When caregiving becomes too overwhelming or demanding, families may desire to institutionalize the care recipient in nursing homes or assisted living homes. Previous research on dementia family caregivers has found that caregiver burden is positively associated with the desire to institutionalize, whereas positive aspects of caregiving are negatively associated (Vandepitte et al., 2018 & Fields, Xu, and Miller, 2019). Other cultural or personal factors, such as religion or race/ethnicity, may also influence a caregiver’s desire to institutionalize (Fields, Xu, and Miller, 2019 & Cho, Ory, and Stevens, 2016).

For example, when comparing the caregiving experience by sex, it was found that while there is no significant relationship between caregiver burden and positive aspects of caregiving, there were different effects of each variable on the desire to institutionalize by each sex (Wong, Ng, and Zhuang, 2019). The purpose of this project is to understand how characteristics of dementia family caregivers’, particularly perceived aspects of caregiving, caregiver burden, and sex, influence their desire to institutionalize.

Methods

163 dementia family caregivers enrolled in the Time for Living and Caring study, a 16-week intervention aimed to improve respite time-use satisfaction funded by the National Institutes of Aging. At baseline, participants completed surveys including those used to measure positive aspects of caregiving, caregiver burden, desire to institutionalize, and other demographic variables.

Caregiver burden was measured using the Caregiver Burden Inventory, which consists of 24 statements measured on a 0-4 scale. The five dimensions of caregiver burden are time-dependence, developmental, physical, social, and emotional burden. For each participant, the scores for all items were averaged and multiplied by 24 for a final score ranging from 0-96, with a higher score indicating greater burden. Desire to institutionalize was measured six yes/no questions, which were scored from 1-2. For each participant, the scores for all items were averaged and multiplied by 6 for a final score ranging from 6-12, and the data was recoded so a higher score would indicate less desire to institutionalize. Lastly, positive aspects of caregiving was measured using the Positive Aspects of Caregiving scale, which consists of 9 statements measured on a 1-5 scale about a caregiver’s mental and emotional perception of the caregiving experience. For each participant, the scores for all items were averaged and multiplied by 9 for a final score ranging from 1-45, with a higher score representing a more positive appraisal of caregiving.

Four regression models were used to understand the relationship between these variables on the desire to institutionalize. Model 1 was a bivariate regression comparing caregiver burden and desire to institutionalize, model 2 comparing positive aspects of caregiving and desire to institutionalize, and model 3 used both caregiver burden and positive aspects of caregiving to predict desire to institutionalize. Model 4 was a multivariate regression that also controlled for age, sex, race/ethnicity, caregiver health, caregiver employment, adequacy of income, relationship between caregiver and care recipient, and number of children in the household. Independent t-tests were also used to compare the average caregiver burden, positive aspects of caregiving, and desire to institutionalize scores between males and females.

Results

Positive aspects of caregiving and caregiver burden have a moderately weak negative relationship (r=-0.44). As shown in Figure 1, there is a moderately weak, positive association between caregiver burden and the desire to institutionalize (r=0.43). On the other hand, as shown in Figure 2, there is a very weak, negative association between positive aspects of caregiving and the desire to institutionalize (r=-0.17).