Home, but homebound: The impact of caregiving, financial, and community resources on the lives of individuals with dementia Summary/Abstract Individuals with dementia live for many years at home in the community. Even though the community is the overwhelming preference for site of care, the experience of living with dementia in the community is not always optimal for patients and their caregiving families. Our previous work using data from the 2011 National Health and Aging Trends Study estimated that one million persons with dementia are homebound (i.e., rarely or never leave the home), the majority of whom also have other serious medical illnesses. This homebound population with dementia is larger than the number of individuals with dementia currently living in nursing homes. Although being homebound is likely to have a profound impact on the lived experience of individuals with dementia, we currently do not know the frequency of transitions in or out of homebound status or the implications of homebound status for patients' quality of life and access to care. Furthermore, an individual's ability to leave the home is not only determined by the cognitive and functional decline associated with dementia progression. Social resources including caregiving networks (social support, caregiver availability and well-being), financial factors (income, insurance, economic well-being), and community context (cohesion, walkability, service availability) also are likely to contribute. To achieve the study aims, we will use the longitudinal, nationally representative National Health and Aging Trends Study and the companion National Study of Caregivers with linkages to Medicare claims, the U.S Census and other geographic data. Through rigorous analysis of these data, we will examine how social resources impact if and when individuals with dementia become homebound, adverse consequences of homebound status, and critically, factors that help protect patients against homebound status. In addition to characterizing the timing of transitions to homebound status and nursing home placement among individuals living with dementia (Aim 1), we will also examine the impact of one's caregiving network, financial resources, and community/neighborhood context on transitions to homebound status among individuals with dementia (Aim 2), and evaluate the consequences of homebound status on valued life activities, unmet care needs, and potentially avoidable health care use (Aim 3). In summary, this project will critically enhance our understanding of the lived experience of patients with dementia by documenting the frequency and duration of episodes of being homebound, evaluating modifiable factors that predict homebound status, and quantifying the consequences of homebound status.
Utilizing a longitudinal cohort of patients and caregivers, this project will examine how social resources (caregiving, financial, and community) impact the ability of individuals with dementia to safely live in the community. By better understanding homebound status, evaluating its modifiable predictors, and quantifying its consequences, this project will enhance our understanding of the lived experience of patients with dementia and their caregiving families.