Too little, too late: lack of uptake of outpatient care for dementia patients

New study from the Bavarian Digital Dementia Register

Primary care from a general practitioner, housekeeping assistance or adult day care centers: people increasingly require support in coping with tasks in daily life such as shopping or personal hygiene when their memory starts to deteriorate or orientation around the house becomes increasingly difficult. People with mild cognitive impairment resort less frequently to outpatient facilities than people suffering from mild to moderate dementia, but the differences are only slight. This is the conclusion reached by researchers from the Bavarian Digital Dementia Register (digiDEM Bayern) at Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU).

Compared to people suffering from mild to moderate dementia, cognitive decline is less advanced in people with mild cognitive impairment (MCI). People with MCI can largely go about daily activities such as shopping, personal hygiene or banking independently due to their only slight cognitive impairment.

However, approximately 70 percent of people with MCI develop Alzheimer’s disease within a period of five years – entailing a higher level of support. As most people with MCI or dementia are cared for at home by family caregivers, the burden on their carers steadily increases as the disease progresses.

Take heed of the first signs of cognitive impairment

It is important to take the long-term care of people with MCI into consideration. Some of the support services are aimed directly at family caregivers, for example advisory services or respite care. “Often, those affected only seek assistance once the strain of caring for their relative at home has already reached a peak,” explains Anne Keefer, first author of the study and research associate at digiDEM Bayern. It is therefore important that people find out about the various outpatient services available as soon as they notice any slight cognitive decline.

Lack of availability and fear of stigmatization

Until now, research has focused predominantly on the extent to which people with dementia and their family caregivers make use of outpatient services. “We don’t know much about which services people with MCI and their relatives actually use,” explains Anne Keefer. <In the study, Anne Keefer and her colleagues discovered that both people with MCI and people with dementia predominantly use the services “primary care from a general practitioner” (54.4 percent), “housekeeping assistance” (36.5 percent), “outpatient care” (30.4 percent) and “psychosocial intervention” (30.2 percent).

Overall, the uptake of outpatient support services is rather low.” There are a number of different reasons why this may be the case. According to Anne Keefer, “it is possible that those affected do not yet require much assistance at all. However, people may also be reluctant to seek support if there is a lack of services on offer, if they are unaware of which services are actually available, if they fear stigmatization, if they are anxious about finances or if they are held back by their own personal values and conviction.”

Differences in uptake

The results also indicate that people with MCI make use of four of the thirteen services included in the study less often than people with mild to moderate cases of dementia. For instance, people with MCI use the services “outpatient care”, “adult day care centers” and “respite care” less frequently and purchase fewer “aids” such as walking sticks, hearing aids or glasses. All other outpatient services are used equally by people with MCI and those with mild to moderate cases of dementia, including “outpatient care” , “housekeeping assistance” or “supported living and alternative housing services”.

Surprising result

In a further analysis, FAU researchers focused not on the individual offers of assistance but rather on the total number of services used. As well as differentiating between the groups “MCI vs. dementia”, the researchers considered other factors such as age, gender, place of residence, level of education, severe disability or specific level of care assigned to them within the German health system. On average, approximately two outpatient services were used in the last 30 days, with people with MCI using fewer services on average than people with mild to moderate dementia. “This result surprised us, as you would expect people with MCI to have a considerably lower requirement for support compared to people with mild to moderate dementia,” explains Prof. Dr. Elmar Gräßel, co-author and principal investigator at digiDEM Bayern. The researchers explored other possible contributory factors to explain the unexpected results of the study.

Care level a major factor

“The fact of whether or not the person has been assigned a particular care level correlates strongly with use of outpatient services,” according to the gerontologist Anne Keefer. One reason may be the comprehensive advice people in this position receive from the Bavarian Medical Service when it makes its assessment of whether or not a person should be assigned a particular level of care and determines which services ought to be covered by statutory health insurance. “Depending on the assigned level of care, anyone who is assigned a particular level of care can expect financial assistance for support services,” says co-author and principal investigator at digiDEM Bayern Prof. Dr. Peter Kolominsky-Rabas.

However, the uptake of support services does not only depend on cognitive abilities. Other contributory factors include a higher age, female gender, living alone and a subjectively low quality of life.

Early intervention is important

According to the researchers, the main focus ought to be on providing advice and support when the first symptoms of cognitive decline arise. Nursing and care services gain in importance as the disease progresses. “We recommend finding out in good time about outpatient support services, and making it easier for people to access the support services they need in order to improve the care of people with MCI and dementia and to relieve the burden on family caregivers as far as possible,” says Prof. Dr. Peter Kolominsky-Rabas.

Further information:

Ilona Hörath
digiDEM Bayern
Phone: +49 163 883 884 5
ilona.hoerath@fau.de