Despite the additional challenges that can come with caring for an older person living with dementia, both patients and their caregivers would prefer to age in the patient’s home.
Both sides cite a desire to maintain patient independence and to avoid both stories about congregate care settings and the feelings of guilt that could arise from transferring a loved one to a specialty care center. This is according to research published by the Leonard Davis Institute of Health Economics (LDI) at the University of Pennsylvania.
The study with LDI’s findings was published in the Journal of the American Geriatrics Society and includes interviews with 74 key stakeholders. The interviews included “14 people with mild cognitive impairment or mild dementia, 36 family care partners of people with mild, moderate, or severe dementia, and 24 dementia clinicians, including physicians, advanced practice providers, occupational therapists, and social workers. ” the study explained.
The findings identified that there are four core reasons why stakeholders prefer to age in place. The first is the desire to maintain the patient’s independence, while the second is rooted in the perception that the best care for dementia patients comes from loved ones within the home.
The third reason stems from a general lack of trust that families have in congregate care facilities, a sentiment that was reinforced after the initial outbreak of COVID-19 in these facilities. Finally, caregivers try to avoid feelings of guilt that might arise from transferring their loved one to these facilities.
The research included the perspectives of people with dementia, which other research projects may prefer to avoid, as cognitive impairment could make it more difficult for researchers to gain insights from this group. But the shared perspectives help amplify the expressed concerns of other patients and caregivers, the findings showed.
“I want to maintain 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 being independent, it’s fine.”
There was a clear overlap between dementia doctors’ perspectives on congregate care facilities and the perspectives shared by the patients themselves, the researchers noted.
“Our nursing home care is not great in this country,” said one doctor. “There is also a lot of inequality based on your income, the quality of care you receive, and patients and their families are concerned about being subjected to poor care.”
But an event can also occur that leads to an immediate change: from living at home to a move to a special care institution. One caregiver mentioned the need to spend more time with their own family or to correct an imbalance in work responsibilities, but other families are making a more conscious plan to include caregiving in a specific environment.
“It is generally accepted that most older adults, including people with dementia, prefer to remain in their own homes as they age,” the findings said. “However, the idea that patients make the ‘choice’ to age in place is incorrect. We found that patients and families often feel forced to follow one path or the other, and few can make the informed decision to seek care in a residential facility or make adjustments to their home.”
Researchers working on this project said that they “should not continue to report time spent at home as a positive outcome for dementia care studies or policy initiatives without also addressing caregiver well-being, patient suffering, measure the financial burden and more.”
