Dementia and Occupational Therapy - Home caregiver and senior adult woman
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Hospice care significantly benefits assisted living residents and other people living with dementia, underscoring the need to ensure access to high-quality end-of-life care for this growing population, according to the results of a new study published in Health Affairs.

With almost half of older adult hospice enrollees having a dementia diagnosis, researchers from the University of California, San Francisco, and Icahn School of Medicine at Mount Sinai compared quality of care in the last month of life between individuals with dementia on hospice and those not receiving hospice services.

Researchers questioned spouses or adult child caregivers of individuals receiving care in assisted living communities, nursing homes, individual homes or dedicated areas within a hospital or freestanding hospice facility. About 40% of study participants had dementia, and 59% of them used hospice care provided in long-term care settings, at home or in a dedicated hospital area or freestanding hospice.

According to research findings, 52% of individuals with dementia enrolled in hospice reported care to be excellent, compared with 41% not enrolled in hospice. And 67% in hospice reported having anxiety or sadness that was managed, compared with 46% not in hospice. Those in hospice also reported fewer changes in care settings in the past three days of life compared with those not in hospice (10% versus 25%). 

Because the hospice model was designed for people with cancer, researchers expected end-of-life care to be worse for individuals with dementia than for those with cancer. 

But researchers found that the hospice model — which assumes the dying person is able to participate in decision-making and that family members provide care between visits — “may result in both reduced access and paradoxically long stays, and high rates of disenrollment while still alive,” according to co-author Lauren Hunt, Ph.D., RN, a UCSF nurse practitioner and health services researcher.

People living with dementia risk disenrollment in hospice due to insurance reimbursement criteria requiring documentation of continuous decline. This risk, researchers said, may lead some people living with dementia to enroll in hospice too late to gain the full benefit of hospice — if they enroll at all.

Many hospice organizations, researchers found, are reluctant to enroll individuals with dementia for more than “brink-of-death care” due to regulatory changes and increased oversight requiring documentation of continuous decline for eligibility and insurance reimbursement.

“Hospice policies could be changed to better fit the unpredictable trajectory of dementia,” Hunt said in a statement

Assisted living’s role

Hunt and first author Krista L. Harrison, Ph.D., an associate professor in the UCSF Division of Geriatrics, told McKnight’s Senior Living that assisted living and memory care centers are important settings for people with dementia receiving hospice care. They said assisted living providers can use the knowledge that hospice reduces sadness and anxiety, and improves overall care quality, to educate residents and their families about the benefits of hospice to ensure a timely referral.

“Assisted living centers are ground zero for current debates about the fit of the hospice model for people with dementia,” Hunt and Harrison said.

But one challenge is that the hospice model requires that a person have a six-month prognosis, which can be difficult to determine for someone with dementia.

“More work, including through collaborations with memory centers and assisted living settings, is needed to adapt the hospice care model to the specific needs and disease course of people with dementia,” Hunt and Harrison said.

Rethinking hospice model

Researchers said policymakers should consider the benefits of hospice services when weighing changes to hospice policy and regulations that may impact people living with dementia. 

Researchers tracked through the National Health and Aging Trends Study 2,059 older adults aged more than 70 years who died between 2011 and 2017. Of the 40% of older adults (951) with dementia, 59% used hospice. The study was funded by the National Institute on Aging.

“Future work should examine whether removing prognostic requirements from hospice eligibility for people with dementia positively affects timely access and care quality,” said first author Krista L. Harrison, Ph.D., an associate professor in the UCSF Division of Geriatrics.

Read more about this study in the McKnight’s Clinical Daily News.