Despite additional challenges that may come with caring for an older person afflicted with dementia, both patients and their caregivers would prefer to age in place within the home of the patient.

Both parties cite a desire to preserve the patient’s independence, and to avoid both concerning stories of congregate care facilities and the guilt that could come from transferring a loved one to a dedicated care center. This is according to research published by the University of Pennsylvania’s Leonard Davis Institute of Health Economics (LDI).

The study featuring LDI’s findings was published in the Journal of the American Geriatrics Society and includes interviews with 74 key stakeholders. The interviews include “14 people living with mild cognitive impairment or mild dementia, 36 family care partners of persons living with mild, moderate, or severe dementia, and 24 dementia clinicians, including physicians, advance practice providers, occupational therapists, and social workers,” the study explained.

The findings determined that there are four core reasons that the involved stakeholders prefer to age in place. The first is the desire to maintain the patient’s independence, while the second is rooted in a perception that the best care for dementia patients comes from loved ones inside the home.

The third reason stems from a general lack of trust that families have for congregate care facilities, sentiment that was amplified following the initial outbreak of COVID-19 in these facilities. Finally, caregivers seek to avoid feelings of guilt that could come from transferring their loved one into these settings.

The research included the perspectives of people living with dementia, which other research projects might tend to avoid since cognitive impairments could make it more difficult for researchers to gain insights from this group. But the perspectives shared help to reinforce the stated concerns of other patients and caregivers, the findings showed.

“I want to keep my independence as long as I can,” one person with dementia told the researchers. “I want to be able to do what I want to do when I want to do it. … So, as long as we can be here [at home] and be independent, it’s fine.”

There was a clear overlap between dementia clinicians’ perspectives on congregate care facilities and those shared by the patients themselves, the researchers noted.

“Our nursing home care is not great in this country,” one clinician said. “There’s also a lot of inequity based on your income, the quality of care that you receive, and patients and their families worry about subjecting them to poor care.”

But there could also be an event that prompts an immediate change — from living at home to moving into a dedicated care facility. One familial caregiver cited a need to be able to devote more time to their own family or repair an imbalance with work responsibilities, but other families make a more deliberate plan to include care in a dedicated setting.

“It’s widely accepted that most older adults, including those with dementia, prefer to remain in their own homes as they age,” the findings noted. “However, the notion that patients make the ‘choice’ to age in place is flawed. We found that patients and families often feel forced to pursue one path or the other, and few can make the informed decision to seek care in a residential facility or make home adaptations.”

Researchers working on this project said they should not “continue to report time spent at home as a positive outcome for studies or policy initiatives in dementia care, without also measuring caregiver wellbeing, patient distress, financial burdens, and more.”