The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

Abstract

Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming.

Undergraduate student-faculty collaborative research: A pilot study exploring care of a family member with dementia

“…[6] Dementia has ramifications for those affected as well as their family, [7] as approximately 70%-80% of people with dementia reside with a family caregiver. [8] Caregivers provide an estimated 18.6 billion hours of care and save the U.S. healthcare system nearly $244 billion by keeping their family members at home. [6] This cost savings alone highlights the important role that family caregivers play in dementia care.…”

“…[14] The onset of dementia is subtle which leads to assuming the role of caregiving on a gradual basis, sometimes without recognizing the process is actually occurring. [8] Roberts and Struckmeyer coined the phrase "unexpected career of caregiver", a complex, stressful role the caregiver must balance with other demands such as jobs and child-rearing. [8] Eventually, caregivers may provide care for a family member who no longer recognizes them, [7] further adding to caregiver stress.…”

“…Caregiver resilience is a framework that supports using strategies to cope with situations that focus on strength instead of burden, [8] explaining how caregivers manage the daily challenges of caring for their loved ones. Resilience is the ability to maintain normal or even enhanced daily functioning when one experiences adversity.…”

“…[17] Because of these repercussions, caregiver respite may sustain resilience throughout the continuum of care. [8] To investigate the repercussions of being the caregiver for a family member with dementia, an undergraduate nursing student-faculty collaborative research team completed a mixed-method, pilot study to (a) assess the physical, emotional, and financial effects of being a caregiver; and (b) identify the impact of using an adult day service.…”

Enhancing Engagement in Older Adults with Alzheimer's Disease at a Reminiscencce Therapy Adult Day Center

“…For most caregivers, the only respite care they have available is when their loved one is at Glenner Town Square. Respite care is defined as shortterm relief for primary caregivers (Roberts & Struckmeyer, 2018). Caregivers of participants at…”