Study Highlights Gaps in Dementia Care That May Lead to Unnecessary Nursing Home Placement

Jasmine L. Travers, PhD, RN, AGPCNP-BC, CCRN

(Credit: LinkedIn)

A qualitative descriptive study recently published in Alzheimer's & Dementia identified distinct categories of unmet needs and barriers that could contribute to avoidable nursing home placements among Black, Hispanic/Latino, and White patients living with dementia. Study authors noted that the need for applying strategies that aim to address these unmet needs and improve community-based services to reduce nursing home placements in this diverse patient population.¹

In the study, researchers recognized 7 distinct categories of unmet needs in patients living with dementia from 61 interviews conducted in New York. These included assistance with activities of daily living and basic home maintenance; access to resources and services; treatment-related services; opportunities for socialization; recognition of individual preferences; home function, such as unaddressed modification needs; and the availability, capability, and support of family caregivers. Notably, barriers to addressing these needs were reported as limited awareness, knowledge, availability, affordability, and acceptability of existing resources, services, and supports.

"Many people struggled to find the help they needed, such as connecting with home health aides or housekeeping services, did not receive enough hours of care, or could not afford the help they needed. Even when services were available, limitations from insurance, high costs, a lack of available workers, and scheduling at preferred times often left people without sufficient support to stay safely at home," coauthors Jasmine L. Travers, PhD, RN, AGPCNP-BC, CCRN, assistant professor of nursing, and Aasha Raval, MPH, BDS, research associate, both at NYU Rory Meyers College of Nursing, told NeurologyLive^® in a recent interview. "This gap in finding reliable help was a major reason for the nursing home placement. Clinical teams might recognize this gap and be ready to ask their patients these questions and serve as liaison to connect patients with the services that they need."

The research involved interviews with patients living with dementia (n = 19), their family care partners (n = 17), and key informants which were nursing home staff from 2 New York facilities (n = 25) and aging policy experts (n = 10). Authors noted that 11% (n = 2), 12% (n = 2), and 8% (n = 2) of patients with dementia, family care partners, and key informants, respectively, identified as Black, whereas 32% (n = 6), 47% (n = 8), and 32% (n = 8) of patients with dementia, family care partners, and key informants, respectively, identified as Hispanic/Latino. All 1-on-1 interviews with each of the participants were conducted by researchers between March 2022 and November 2022.

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"Clinicians face significant challenges because the entire system still favors nursing home care over home- and community-based services, which often have long waitlists, excessive paperwork, and workforce shortages. Even programs designed to help people stay at home, such as Money Follows the Person or the Program of All-Inclusive Care for the Elderly (PACE), are not available everywhere or to everyone who needs them," Travers and Raval said in the interview. "Additionally, the services covered often depend on complex Medicaid rules rather than what is best for the individual. For Black and Latino families, there is an added layer of disparities and fewer culturally tailored services, making it even more difficult for clinicians to connect them with necessary support. Furthermore, gaps in affordable housing and community resources limit clinicians’ options to keep people safe and supported at home."

Aasha Raval, MPH, BDS

(Credit: Hartford Institute for Geriatric Nursing)

Based on the identified distinct categories of unmet needs and barriers from the interviews, the results emphasized that with appropriate support, many patients with dementia could remain at home rather than enter nursing homes. However, the participants in the study and previous studies have underscored that both paid and unpaid assistance options for patients with dementia can be limited, and navigating available community services could remain a significant challenge.²

Authors also noted that the study’s limitations included potential recall bias in interviews and limited generalizability despite a diverse sample from New York City. Although the sample size exceeded recommendations and included aging policy experts, researchers noted that only nursing home residents with dementia were interviewed. Furthermore, the small sample across racial and ethnic groups may prevent conclusions about differences in unmet needs, though future research could address this.

"We are currently researching the differences across racial and ethnic groups in more detail. We found that when we spoke with families of Black and Latino older adults, caregivers face bigger barriers such as fewer culturally tailored services, financial challenges, and deep-rooted distrust in healthcare stemming from historical disparities," Travers and Raval added. "It is not just that care is hard to find, often the available care does not meet their language or cultural needs. Additionally, insurance rules and a shortage of bilingual aides make things even more difficult. This results in families taking on more care themselves on top of full-time jobs, which can be overwhelming and eventually lead to earlier nursing home placements."

"To support these families, we need: Increased Medicaid-funded home care hours to ensure services to keep loved ones safely at home. Enhanced training in cultural competence for home health aides and clinical teams (i.e., bilingual communication skills and understanding cultural values). Expanded community-based programs tailored to Black and Latino caregivers, such as culturally specific dementia education workshops, caregiver support groups in preferred languages, and programs like PACE and Community Aging in Place - Advancing Better Living for Elders (​​CAPABLE), which can help families navigate care and avoid crises. Simplified process to sign up for programs such as PACE and CAPABLE by reducing paperwork, clarifying eligibility rules, and providing information in multiple languages and culturally appropriate formats, so families/older adults know what help exists and how to get it," Travers and Raval told NeurologyLive.

REFERENCES
1. Travers Altizer J, Shenoy S, Balaji A, Bergh M, Raval A, Jimenez A. Unmet needs and nursing home placements in Black, Latino, and White people living with dementia. Alzheimers Dement. 2025;21(6):e70265. doi:10.1002/alz.70265
2. Jutkowitz E, Mitchell LL, Bardenheier BH, Gaugler JE. Profiles of Caregiving Arrangements of Community-dwelling People Living with Probable Dementia. J Aging Soc Policy. 2022;34(6):860-875. doi:10.1080/08959420.2021.1927613