A distrust and fear of assisted living communities and other residential care facilities is among the top reasons given by people living with dementia and their family caregivers for choosing to age in place, according to a recent study published in the Journal of the American Geriatrics Society.
To better understand how decisions about aging in place are made, a team of researchers from the University of Pennsylvania, in partnership with the Penn Memory Center, interviewed 74 stakeholders about their preferences. The stakeholders were people living with mild cognitive impairment or mild dementia, family members caring for those individuals, as well as dementia clinicians, including physicians, advanced practice providers, occupational therapists and social workers.
In addition to a distrust and fear of residential facilities, the investigators found that preferences for aging in place are driven by a desire to preserve the independence of the person with dementia, perceptions that the best care is delivered by loved ones in the home, and caregiver guilt.
The distrust of residential care facilities was not just among individuals living with dementia and their family members; it also was seen in clinicians, the authors said. One clinician respondent, for instance, said that families are worried that due to inequity of care based on income, their loved ones will be subjected to “poor care.”
When families see residential care facilities only as a “last resort,” however, they are hindered in their planning to improve care in the home and in finding acceptable facilities in the future, the authors noted. Many decisions to move, they said, were reactive and triggered by safety events, physical dependency or the loss of a caregiver. This finding makes such decisions reactive and made in imperfect conditions, not choices.
By contrast, those who made proactive decisions about a move to residential care often were familiar with the challenges of caring for a person with advanced dementia in the home, and they had substantial financial resources to provide major home adaptations or had the ability to avoid “lower quality” settings, according to the researchers.
As interest in promoting aging-in-place for people living with dementia increases, clinical and policy interventions should consider factors to advance resident and family agency and equity, the authors said. Interventions are needed to promote more informed decision-making for care settings for individuals with dementia, along with improved financial support across care settings, they added.
“Dementia is a disease that impacts families, and it requires multidisciplinary care teams,” the authors concluded. “It is vital to incorporate these varied perspectives when studying complex decisions, such as if and when to change care settings.”
