Between Home and Nursing Home: The Challenge of Dementia Care

In the debate on the care of dementia patients, a recent study by the Leonard Davis Institute of Health Economics at the University of Pennsylvania shows that both those affected and their caregivers prefer aging in their own homes—despite the associated challenges. The focus is on the desire to preserve patient independence and avoid negative experiences in care facilities as well as potential guilt from relocating a relative to a nursing home. The study, published in the Journal of the American Geriatrics Society, includes discussions with 74 key stakeholders, among them individuals with mild cognitive impairment, their family members, and professionals from the caregiving sector. Four main reasons were identified for the preference of aging in place. In addition to independence, personal care by family members is considered the best possible care. At the same time, the lack of trust in nursing facilities, particularly after the negative experiences during the first wave of the coronavirus pandemic, is acknowledged. The feeling of failure, should family members be placed in institutional care, reinforces these preferences. However, the researchers emphasized the importance of also considering the well-being of caregivers and financial burdens in future studies. The analysis of the discussions reveals that the chosen path of aging in a familiar environment is often not a self-determined decision-making process but rather a forced direction. Many families find it difficult to decide whether to provide care at home or to use an appropriate facility. The study also cautions that the time patients spend at home cannot be regarded as the sole positive indicator of success in dementia care as long as other factors, such as caregiver well-being and financial burdens, remain unaddressed. These insights reinforce the call to apply broader criteria in the evaluation of care programs.