Dementia and Institutionalization

A recent study featured in NeurologyLive highlights serious gaps in dementia care that often lead to unnecessary nursing home placement. Researchers interviewed individuals with dementia, family caregivers, and healthcare professionals in New York City and identified seven key unmet needs: help with daily activities, access to services, treatment-related care, social interaction, respect for personal preferences, home safety modifications, and support for caregivers.

Barriers such as financial constraints, lack of service awareness, workforce shortages, and complex Medicaid rules prevent families from accessing needed care. These challenges are even more severe for Black and Latino communities, who often face language barriers, limited culturally appropriate services, and systemic mistrust of the healthcare system.

The study also found that the current healthcare system tends to favor institutional care over community-based services like PACE and CAPABLE, which are often difficult to access due to long waitlists and administrative hurdles. To reduce unnecessary nursing home admissions, the researchers recommend expanding Medicaid support for home care, improving cultural competency in caregiving, increasing community-based services, and streamlining access to support programs.