Although quality end-of-life care generally was preserved during the COVID-19 pandemic, people living with dementia in the United States were more likely to have unmet religious needs than those without dementia, according to the results of a new study.
In first-of-its-kind research examining the interaction between dementia status and the pandemic on end-of-life care quality, investigators from Tohoku University Graduate School of Medicine in Miyagi, Japan, said that their results — recently published in JAMDA, the journal of AMDA–The Society for Post-Acute and Long-Term Care Medicine — support the existing need for spiritual care for people with dementia, regardless of a healthcare crisis and restrictions.
The investigators collected data from 1,050 family members of deceased participants in the National Health and Aging Trends Study of Medicare beneficiaries. Sixty percent lived at home, and 40% lived in residential care communities. Of those participants, 423 had probable dementia.
The researchers concluded that most end-of-life quality indicators were preserved during the pandemic, but disparities in spiritual care may exist among people living with dementia. Those with dementia were less likely to talk about religion in the last month of life than were those without dementia.
Care quality preserved during pandemic
The authors noted that people living with dementia often receive suboptimal end-of-life care, including poor communication and inattention to their personal care needs as well as poor pain management. The COVID-19 pandemic further challenged care for these individuals, they said.
Family members or non-relatives such as staff members in residential care communities were asked to rate pain and symptom management, communication and decision-making, emotional support and overall care quality.
Overall, 74% to 81% of participants reported that the older adults experienced pain; 54% to 63% said that the older adults experienced breathing trouble; 58% to 67% reported anxiety / sadness in the older adults, and 47% to 52% of participants said the individuals did not talk about religion. Between 51% and 61% reported that the overall quality care rating for the older adults was not excellent.
The data also showed that those who died during the pandemic, regardless of a dementia diagnosis, were more likely to have a lower quality care rating than those who died prior to the pandemic. Researchers said that this finding suggests that pandemic-related restriction had an equal negative effect on people with and without dementia.
But in general, they found that quality of end-of-life care was preserved for older adults in the United States. The authors noted that hospice care engagement, which has been shown to improve end-of-life care in dementia patients, may have contributed to this finding.
Unmet religious needs identified
But the investigators noted that people living with dementia were more likely to have unmet religious needs than those without dementia.
“Although spiritual care for persons with dementia is recognized as being intended to help them express their faith and religious beliefs, it receives less attention than advance care planning and psychological aspects of care in recommendations for palliative care for people with dementia,” the authors concluded. “Our findings highlight the existing disparities in spiritual care between persons with and without dementia.”
