Over the past 25 years, significant strides have been made in shifting services for people with dementia and Alzheimer’s disease to home and community settings. Home and community-based services (HCBS) enable people with various forms of dementia to receive care in a familiar setting while promoting their independence, well-being, and overall quality of life. As Americans get older, this shift is vital.
Shifting care to home and community
In recent years, there has been a shift in how dementia care is provided. Twenty-five years ago, nursing homes were commonly chosen for individuals with dementia. However, recognizing the advantages of person-centered care and the importance of maintaining community connections, a paradigm shift occurred. This shift paved the way for the development and expansion of HCBS options tailored to the needs of people with dementia.
Making more services available
Over time, the variety of HCBS options for individuals with dementia has grown. Nowadays, people and their families can choose from services like home health care, personal care assistance, respite care, and adult day programs. For example, programs like CAPABLE have shown how help with home modifications and transportation can help people stay in their homes longer. These services are meant to provide support in various areas of daily life, including personal care, medication management, meal preparation, social engagement, and cognitive stimulation.
Moreover, one of the notable advancements in HCBS for dementia is the increased emphasis on personalization. Service providers have recognized that each person’s experience with dementia is unique. This has led to greater adoption of person-centered approaches. These approaches focus on tailoring care plans to meet the specific needs, preferences, and goals of the individual. This shift has resulted in more meaningful and empowering care experiences, and promotes autonomy and dignity for people living with dementia. But gaps remain in understanding cost, quality and equity.
Supporting HCBS research networks
An ongoing challenge in improving HCBS is the need for better data and quality measures. To help fill the gap in measurement and understanding of HCBS, the National Institute on Aging is launching the Community Care Network for Dementia. First conceived in 2022, the mission is to advance dementia HCBS through collaboration, research, and greater diversity. The Network connects researchers and practitioners in the field to advance the measurement of care. It will generate data tools that enable the analysis of the structure, process, and outcome measures of dementia HCBS. These tools can guide evidence-based decision-making and contribute to policy advancements.
Additionally, the Network supports the development of home and community service researchers. It aims to recruit scholars from Black, Hispanic, Asian, Native American, Hawaiian/Pacific Islander, and other underrepresented groups. Dementia researchers must address known dementia disparities. To do so, the Network has mentorship programs that provide guidance to early stage researchers. Furthermore, the Network commits to building an infrastructure that reflects NIH’s strategic plan for diversity, equity, and inclusion (DEI). Network initiatives, products, and mentorship activities will be developed through a DEI lens, ensuring that all voices are heard and valued. The National Institute on Aging provides ongoing grant opportunities to people interested in studying care for people living with dementia.
Progress in delivering home and community-based services for people with dementia in the last 25 years has been impressive. The shift to a person-centered approach has led to significant improvements in dementia care. Personalization, technology integration, and caregiver support have all contributed to these advancements. These changes not only enhance the lives of individuals with dementia but also offer crucial assistance to their families and caregivers. The Community Care Network for Dementia will help advance research to support future work that improves HCBS.
People interested in participating in the Network can join at this website.