Under the direction of a multidisciplinary team of social scientists and clinical researchers with more than two decades of experience, our INSPIRE study uses a prospective, longitudinal design focusing on informal caregivers’ involvement at the end of life of residents with advanced dementia in assisted living communities throughout Georgia. Our goal is to improve understanding of the relationships between and among informal caregiver involvement, informal caregiver health, and quality of life of assisted living residents with advanced dementia at the end of life and ultimately identify potentially modifiable factors at the individual, assisted living, and wider community-levels associated with adverse outcomes. The INSPIRE Study, which is the first to focus on these relationships in-depth or over time, will offer valuable insights to researchers, policymakers, and providers.

Unpaid caregivers such as relatives and friends of persons with Alzheimer’s disease and related dementias (ADRD) experience a range of adverse health issues such as more stress, depressive symptoms, and physical health problems, especially when the care recipients approach the end of life, when compared to non-dementia caregivers (1,2). These unpaid caregivers often choose assisted living for dementia care to help ease their burden (3-6). Assisted living uses a combination of paid (professional staff such as direct care workers) and unpaid caregivers, to which unpaid caregivers are crucial for supplementing professional care (3, 10-16). Unpaid caregivers’ support ranges from social visits and hands-on care to monitoring and managing professional care for loved ones in assisted living (3, 12, 15, 16). The effect of caregiver involvement and caregiver burden on unpaid caregivers and their care recipients over time is unknown and is the topic of this investigation. Our innovative investigation is prospective and longitudinal. Previous research has been retrospective and cross-sectional; however, these studies have shown that greater unpaid caregiver involvement is associated with greater caregiver burden. This is particularly true for those who provide more labor-intensive and emotionally taxing involvement. These studies suggest the caregiving burden may be great for unpaid caregivers in assisted living settings compared to nursing homes, especially caring for residents with advanced dementia at the end of life (3, 15, 17, 18).

Research suggests the outcomes associated with caregiver involvement may vary on multiple factors (3, 12, 15-17, 21). These factors include individual-level factors such as caregiver demographics, socioeconomic status, and access to resources, and factors at the assisted living and community levels such as staffing levels and geographical location. This investigation is vital for identifying modifiable factors to improve care among residents with ADRD and enhancing support for unpaid caregivers, assisted living staff, and policymakers.

We seek to improve our understanding of the relationships between and among unpaid caregivers’ involvement, their health, and the quality of life of assisted living residents with ADRD at the end of life, and to identify possible modifiable factors associated with adverse outcomes to better support families, friends, assisted living staff, and communities.

Our specific aims of our study are: 

• Assess unpaid caregiver involvement in assisted living end of life care and investigate how it changes over time in response to changes in residents’ care needs and examine multilevel influences on these relationships.
• Longitudinally investigate the impact of unpaid caregiver involvement on their health outcomes (i.e., perceived physical and mental health, caregiver burden, and distress) and assess the multilevel influences on these relationships.
• Examine reciprocal effects among unpaid caregiver involvement, their health outcomes, and the residents’ quality of life.