Hospice is a key model of home care for seriously ill individuals and those with dementia represent the fastest growing group of hospice users. Hospices support patients and caregivers through interdisciplinary care with the goal of enabling individuals to remain at home at the end of life. Living in the community in the last phase of life for those with dementia has increased in the last two decades. Although site of death for decedents with dementia in both 2000 and 2015 was predominantly a nursing home, the proportion dying at home in the community almost doubled from 15% in 2000 to 26% in 2016. Community residential alternatives to long term care in nursing homes, such as assisted living facilities, are becoming more prevalent and are considered a positive phenomenon for promoting independence and improving quality of life for those with dementia. Yet research on end of life care for those with dementia is primarily focused on the nursing home setting and little is known about characteristics of those with dementia who remain in the community and the types of supportive services (e.g., personal care, medication assistance, meal preparation, transportation) that they receive. Also unknown is the extent to which hospice is added as an extra layer of support for those with dementia and their families who remain in the community. To address these gaps in knowledge, we propose a supplement to our geriatric palliative care focused Claude D. Pepper Older Adult Independent Center. We will employ the Medicare Current Beneficiary Survey, a nationally representative panel survey of Medicare beneficiaries linked to Medicare administrative data and regional characteristics, which provides a unique opportunity to examine those with dementia living in a range of settings including private residences, assisted living facilities, retirement homes, continuing care communities, and nursing homes, with a range of supportive services (e.g., personal care, medication assistance, meal preparation, transportation). We will determine patient, family, and regional characteristics associated with residential setting and associated with hospice enrollment across residential settings for those with dementia. We will also describe the trajectory of transitions across residential settings at the end of life for those with dementia. The proposed research will lay the foundation for a program of research regarding hospice use in the context of dementia and across residential care settings leading to a more comprehensive picture of the consequences of the increase in home care for those with dementia at the end of life.
This proposal is relevant to public health because it examines residential setting for the increasing number of those with dementia in the U.S. who remain in the community at the end of life. Alternatives to institutional long term care, coupled with hospice enrollment, have the potential to improve quality of life and promote function and independence for individuals with dementia.
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