If everyone was more aware of dementia, it could improve comfort in a loved one's dying days, say Canadian geriatricians who found distressing medical procedures were common among nursing home residents, especially men.
The geriatric researchers published a study Friday in the journal JAMA Network Open on 27,000 nursing home residents in Ontario with advanced dementia who died. They focused on differences between men and women in receiving "burdensome interventions" in the last month of life. These included transfers to an emergency department to be mechanically ventilated and other invasive treatments.
While people with early-stage dementia can understand and communicate their needs, those in an advanced stage have profound memory impairment and are often unable to walk or recognize family members and may need help to eat, dress, groom and bathe.
Dr. Nathan Stall led the research, which he hopes will guide better care for frail, vulnerable older adults with advanced dementia.
"It really can be psychologically distressing for these individuals to be transferred out of their home to a foreign environment where all sorts of invasive things are happening to them," said Stall, a geriatrician and research fellow at Women's College Research Institute in Toronto. "It's thinking about how can we improve the quality of life for these people at the end of life."
When physicians and family members of people with dementia are asked what the goal of care should be at the end of life, more than 90 per cent say quality of life, he said.
In the last 30 days of life, the researchers' findings included:
- One in 10 nursing home residents visited a hospital emergency department.
- One in seven died in an acute-care facility.
- One in four were physically restrained.
Persistent sex difference
What was striking, Stall said, were the sex-based differences.
Almost 29 per cent of male residents were hospitalized in the last 30 days of life, compared with 19 per cent of women. About 11 per cent of men visited emergency departments, compared with eight per cent of women. Antibiotics were given to 41 per cent of men, compared with 34 per cent of women.
It's well documented that women are less likely than men to be offered invasive procedures earlier in life, such as a knee replacement, Stall said. The difference persists at end of life despite the care no longer being optimal, he added.
For Stall, the next step is to improve awareness about the terminal prognosis of advanced dementia and complications such as aspiration — having food or saliva go into the lungs that can land a patient in hospital.
Study co-author Dr. Paula Rochon, vice-president of research at Women's College Hospital, said geriatricians are an important resource to help families think about difficult questions about end of life wishes early on with families. Dementia disproportionately affects women.
Beth Kallmyer, vice-president of care and support for the Alzheimer's Association in Chicago, manages a 24-hour help line staffed by specialists and other clinicians for people with dementia and their families.
"The need for better access for palliative and hospice care really jumped off the page to me," Kallymer said of the study's findings. She was not involved in the research.
"Sometimes in the end stages of life, the family's agitation and upset and emotional distress … after a long disease can translate to the patient. If someone's supporting the family then it can be a calmer environment and a better experience."
Kallymer said general awareness of dementia is improving, for instance as high-profile people talk about going on with their lives after diagnosis in contrast to its end stages.
In the study, nursing home residents died between June 2010 and March 2015. They were 66 or older. The research was based on an analysis of long-term care databases and couldn't explore whether the end-of-life interventions and antibiotic use agreed with residents' expressed wishes.
Researchers have also found high rates of burdensome interventions among nursing home residents with advanced dementia in the U.S.