Older adults living with dementia need to be given more and earlier opportunities to discuss their care-related wishes as they approach the end of their lives, according to the authors of a recent study published in the Journal of Palliative Care.
Older adults living with dementia and receiving palliative care in assisted living communities or at home had significantly more hospitalizations and emergency department visits in the last year of life compared with skilled nursing facility residents, according to the study.
Approximately 80% (80.2%) of older adults living in assisted living or home visited an emergency department, compared with 58% of nursing home residents. And 70.7% of older adults living in assisted living or at home were hospitalized, compared with 50.8% of nursing home residents.
The skilled nursing group, on the other hand, had more frequent primary care visits and higher rates of advanced care planning documentation than the older adults living in assisted living or at home.
The authors, Mayo Clinic researchers, said the retrospective study’s goals were to guide palliative care practice changes and improve care in all settings.
“Our study findings … may be used to highlight areas of priority for palliative care practice change within primary care,” they wrote. “Among the lessons learned is the need for practitioners to provide patients who have dementia with more and earlier opportunities for advance care plan discussions.”
The researchers studied the cases of 1,203 older adults with dementia who died in an assisted living community, the home or a skilled nursing facility between 2013 and 2018. In addition to comparing the number of hospitalizations and emergency department visits in the last year of life between the settings, they compared advance care plans, hospice enrollment, time in hospice, practitioner visits and intensive care unit admissions.
“In our study, home/assisted living facility residents were more likely to have had a hospitalization or ED visit than skilled nursing facility residents, a finding that may have been influenced by the frequent practitioner visits, high advance care plan rates for the skilled nursing residents, and potential differences in disease trajectory of older adults living in the community versus in skilled nursing facilities,” the authors wrote.
The researchers noted that interventions and care transitions are common near the end of life for those with dementia, but many in the study didn’t receive adequate relief of pain and neuropsychiatric symptoms.
“Palliative care is an important part of care delivery for people with life-limiting illness, including dementia, because it offers opportunities for symptom control, advance care planning and psychosocial support,” the authors wrote. “However, people living with dementia have less access to palliative care than patients with other conditions.”
Advance care plans can improve care decisions
No advance care plan was documented for 12.2% of the assisted living/community group, compared with 4.6% of the skilled nursing group. The authors found that positive outcomes were found that support advance care plans for people living with dementia, particularly those in assisted living care homes, including improved satisfaction scores with care, improved distress markers and reduced acute care use.
The authors pointed to data from the Health and Retirement Study that showed advance directives affected care more for those in the community (including assisted living) than for those in skilled nursing facilities.
“In the community, patients with advanced dementia who did not have an advanced directive received end-of-life care that was as aggressive as care provided to persons with normal cognition, whereas those with advanced dementia who had an advanced directive received much less aggressive care.”
Researchers also found that more assisted living/community residents (57%) were enrolled in hospice compared with skilled nursing residents (68.3%). But time spent in hospice was shorter than the 55-day national median, with assisted living/community residents spending 30 days in hospice compared with 26.5 days for skilled nursing residents.
