Adults with dementia are sometimes thought to be homogenous and presumed to use a lot of health care services, especially later in life, says geriatrician Stephanie Nothelle. But two recent studies Nothelle directed suggest that’s not the case.

“One of the things that’s hard about designing or improving care for people with dementia is that it’s a very heterogeneous group,” Nothelle says. “If you want to design something for the overall population with dementia, what you design may not be the right fit for everyone. Coming up with more tailored care improvements is likely to be important.”

In the first study, investigators analyzed data from 1,793 adults age 65 and up in the National Health and Aging Trends Study who had died and had linked 2011–2017 Medicare fee-for-service claims for at least 12 months before their death. Forty-two percent had dementia, 53% had non-dementia serious illnesses such as cancer or congestive heart failure, and 5% had neither condition. Older adults with dementia were found to have fewer emergency department visits, hospitalizations and outpatient specialty visits during the last year of life, and shorter hospitalizations, than those with non-dementia serious illness. These results were published in the Journal of the American Geriatrics Society.

The second study reviewed health care data of 1,372 older adults living in the Midwest from July 2017–June 2018, from the Rochester Epidemiology Project, to examine number of emergency department, hospital and intensive care unit stays occurring in the last six months and last 30 days of life. Approximately 41% of individuals had multiple serious illnesses. Perhaps unsurprisingly, the rates of emergency department visits, hospitalizations and intensive care unit stays were significantly higher for those who had at least two or three serious illness diagnoses compared with just one illness.

However, further analyses of people with dementia alone compared either to those with a nondementia diagnosis or to dementia plus another serious illness uncovered that those with only dementia had the lowest proportion of emergency department visits, hospitalizations and intensive care unit stays. These results also were published in the Journal of the American Geriatrics Society.

The Alzheimer’s Association has a toolkit on cognitive assessment for clinicians, Nothelle says. When caring for a patient with dementia, it’s important to acknowledge their limitations. For example, someone with a co-occurring condition such as diabetes may not have the cognitive capability to remember to check their blood sugar and/or administer insulin, she says.

Try to make disease management steps as easy as possible for family caregivers, Nothelle says. Beyond suggesting reminders or pill boxes, try to simplify regimens. Switch a twice-a-day medicine for one given once a day, for example, or have the person check blood sugar once a day if they don’t need to do it more often. “Those kinds of simplifications can be really helpful for families, who can be overwhelmed,” she says.

Nothelle and colleagues are continuing to study care improvements for this population.