Family doctor visits, home help services, or day care: When memory fades or orientation at home becomes increasingly difficult, the need for support to manage daily tasks like shopping or personal care rises. People with mild cognitive impairments use outpatient support services less often than those affected by mild to moderate dementia, though the differences are small. This is the conclusion reached by researchers at the Digital Dementia Register of Bavaria (digiDEM Bayern) at Friedrich-Alexander-Universität Erlangen-Nürnberg.
Compared to people with mild to moderate dementia, people with mild cognitive impairment (MCI) experience less pronounced cognitive decline. Everyday activities – such as shopping, personal hygiene, or managing finances – can largely be managed independently by individuals with MCI due to their only slight cognitive limitations.
However, approximately 70 percent of people with MCI develop Alzheimer's dementia within five years – which leads to an increased need for support. Since most people with MCI or dementia are cared for at home by their partners and relatives, this means a steadily increasing burden for caregivers.
Don't ignore the first signs of cognitive impairment
Therefore, it is important to consider the long-term care situation for people with MCI. Some support services are also aimed directly at caregivers and relatives, such as counseling services or what is known as respite care. „Often, those affected only seek support when the burden of home care is already severe."
“is pronounced," says Anne Keefer, lead author of the study and research associate at digiDEM Bavaria. Therefore, affected individuals should be informed about the various outpatient support services as early as possible at the first signs of cognitive impairment.
Lack of availability and fear of stigmatization
Previous research has mainly focused on the extent to which people with dementia and their family members and caregivers have utilized outpatient support services. „However, we know little about which services people with MCI and their caregivers actually use,“ says Anne Keefer. In the study, Anne Keefer and her colleagues found: Both people with MCI and people with dementia most frequently use the support services „General Practitioner Care“ (54.4%), „Household Help“ (36.5%), „Outpatient Care“ (30.4%), and „Psychosocial Interventions“ (30.2%).
“Overall, the use of outpatient support services is rather low.„ The reasons for this can be diverse. “Affected individuals may have had little need for support so far,„ says Anne Keefer. “But the lack of availability of support services, a lack of knowledge that such services even exist, fear of stigmatization, financing issues, or personal values and beliefs can also lead to support not being utilized despite existing need."
Differences in utilization
The results also show that individuals with MCI use four out of thirteen support services considered less frequently than individuals with mild to moderate dementia. For example, individuals with MCI are less likely to use the support services „outpatient care services,“ „daycare,“ and „respite care,“ and are less likely to acquire „assistive devices“ such as walking aids, hearing aids, or visual aids. All other outpatient support services examined are used by individuals with MCI and mild to moderate dementia at the same rates, including „outpatient care services,“ „domestic help,“ and „alternative living arrangements,“ among others.
Surprising result
In a further analysis, FAU researchers no longer considered only individual support services, but also the total number of services utilized. In addition, besides the group distinction “MCI vs. Dementia,” other factors such as age, gender, place of residence, educational attainment,
disability or the presence of a care level. On average, about two outpatient support services were used within the last 30 days, with individuals with MCI also using fewer services on average than individuals with mild to moderate dementia. „This result surprised us, because one would expect individuals with MCI to have a significantly lower need for support than individuals with mild to moderate dementia,“ explains Prof. Dr. Elmar Gräßel, co-author and project leader of digiDEM Bavaria. To explain these unexpected study results, the researchers examined further possible influencing factors.
Care level as an essential factor
„Above all, the existence of a care level is particularly strongly associated with the use of outpatient support services,“ says gerontologist Anne Keefer. One reason for this could be the comprehensive advisory services offered by the Medical Service Bavaria in the context of his assessments to determine long-term care needs and benefit claims for individuals covered by statutory insurance. „Anyone who has received a care level can expect financial assistance for support services, depending on their care level,“ says co-author and digiDEM Bavaria project manager Prof. Dr. Peter Kolominsky-Rabas.
However, the use of support services is not only related to cognitive abilities. Other contributing factors include older age, being female, living alone, and a subjectively perceived low quality of life.
Early support is important
In the case of initial symptoms of cognitive impairment, the researchers advise that the focus should be particularly on offers of counseling and support. Offers of care and supervision only become increasingly important as the illness progresses. „We recommend informing oneself in a timely manner about outpatient support services and facilitating access to these services in order to improve the care of people with MCI and dementia and to keep the burden on caregivers and relatives as low as possible,“ says Prof. Dr. Peter Kolominsky-Rabas.
The digiDEM Bavaria study included 913 individuals with cognitive impairments whose data were collected in the digiDEM Bavaria dementia research project. Of these, 389 had MCI and 524 had mild to moderate dementia. A total of thirteen support services from the „The Dementia Assessment of Service Needs (DEMAND)“ questionnaire were considered. The online questionnaire digiDEM Bavaria DEMAND® helps caregivers and relatives recognize their own care needs and was primarily developed by Dr. Nikolas Dietzel, a research associate at digiDEM Bavaria.
Original Study
You can access the online questionnaire digiDEM Bayern DEMAND® here.
