Understanding the needs and experiences of persons with dementia and other vulnerable older adults across care settings and throughout the trajectory of decline.
Pain, other symptoms, burdensome transitions--all of these experiences are common in vulnerable older adults with and without dementia. Our research seeks to describe and explore these experiences for vulnerable older adults in order to identify gaps and develop optimal solutions to the challenges they face.
Findings include:
Over 40% of community-dwelling older adults with dementia reported that they had pain severe enough to limit their activity, compared to 25% for those without dementia (Hunt et al. JAGS, 2015).
Almost 3 in 4 older adults with dementia experienced pain in the last month of life, and 1 in 10 had poorly managed pain. Poorly managed pain had an increase of almost 50% in Emergency Department visits in the last month of life (Hunt et al. JPSM, 2018.)
Almost 70% of all nursing home residents met criteria for palliative care eligibility, yet 0% received any palliative care services (Stephens et al., JAMA IM, 2018).
Assessing and improving quality of hospice, palliative, and other healthcare service use at end-of-life in persons with dementia.
With enormous growth in access to hospice for persons with dementia and other populations in the U.S. over the past couple of decades has also come growing concerns over cost and quality of hospice care for this population. One major concern is that the hospice model is not the best fit for persons with dementia, resulting in long lengths of stay and high rates of disenrollment (live discharge) when persons with dementia no longer meet eligibility criteria.
With funding from the National Palliative Care Research Center, UCSF Clinical and Translational Sciences Institute, and the UCSF Pepper Center, we are currently conducting a study to examine patterns, predictors and outcomes of live discharge from hospice in a Medicare Beneficiaries with dementia.
Questions we are seeking to answer include:
How many people with dementia are discharged alive from hospice?
What individual-level, hospice-level, and regional factors associated with higher rates of live discharge?
What happens to persons with dementia after they are discharged alive from hospice? For example, how many die within 6 months and how often do they visit the hospital or emergency department.
