Factors of Dementia Caregiver Burden Differentially Contribute to Desire to Institutionalize

Abstract

The experience of dementia caregiver burden is multidimensional. Little is known about how different aspects of burden contribute to the consideration of moving a loved one to a structured living facility. In the present study, caregiver burden (Zarit Burden Interview; ZBI) and consideration of structured living arrangements (Desire to Institutionalize Scale; DIS) were self-reported by 339 caregivers. Exploratory factor analysis was used to determine the ZBI factor structure; these factors were then examined via hierarchical linear regression for prediction of DIS. Factor analysis indicated a 4-factor ZBI solution: Impact on Life, Guilt, Embarrassment/Frustration, and Escape/Uncertainty. Regression analyses indicated that only Escape/Uncertainty ( p < .001) was associated with DIS. Of the 4 identified factors of caregiver burden, desire to escape the caregiving role was most related to consideration of structured living arrangements. Future work should explore longitudinal contribution of this factor to determine its role in actual changes made in living arrangements.

Specific agitation behaviours in dementia differentially contribute to aspects of caregiver burden

“…Results from the current study's factor analysis of the ZBI are generally consistent with past studies showing dimensions of direct impact of caregiving on the caregiver's life, embarrassment/frustration, uncertainty about the future, and guilt 10,12,13,38 . While the Overwhelm dimension did not align directly with prior work, Ankri and colleagues' factor analysis 12 yielded a factor including the three items loading on the current study's Overwhelm factor (‘Do you feel that your relative asks for more help than he/she needs?’, ‘Do you feel your relative is dependent on you?’, ‘Do you feel that your relative seems to expect you to take care of him/her as if you were the only one he/she could depend on?’).…”

“…Caregiver burden is also a multi‐faceted construct, but commonly incorporates dimensions of emotional, social/relationship, and physical health strain 3 . Prior research demonstrates that the multidimensional construct of caregiver burden generally shows at least two factors (personal versus role strain), 8,9 but commonly three or more, in which affective aspects of burden (e.g., guilt, embarrassment frustration, uncertainty) do not consistently align with one another) 10–14 …”

“…3 Prior research demonstrates that the multidimensional construct of caregiver burden generally shows at least two factors (personal versus role strain), 8,9 but commonly three or more, in which affective aspects of burden (e.g., guilt, embarrassment frustration, uncertainty) do not consistently align with one another). [10][11][12][13][14] Exploration of relationships between agitation and aspects of burden would facilitate greater understanding of whether specific presentations or types of agitation elicit distinctive patterns of caregiver burden. For example, it is possible that physically non-aggressive agitation behaviours (e.g., inappropriate dress, disrobing) lead to embarrassment, whereas physically aggressive behaviours (e.g., hitting, throwing things) or verbal agitation (e.g., negativism; constant, unwarranted requests for attention or help; repetitive questions) are more likely to elicit a response of frustration in the caregiver.…”

Mental Health Status among Individuals with Spouses Residing in Long-term Care Facilities: Using Propensity Score Matching

“…About 50% of people with dementia transition from home to long-term care facilities within five years [9]. Despite the objective decrease in the burden of family caregivers following the admission of the older adult with dementia to long-term care facilities, caregivers may experience increased feelings of guilt and depression [10,11]. Even after a person with dementia enters a longterm care facility, their family or spouse's participation in their care does not completely end.…”