Dementia Services Coordinator

People with dementia and their caregivers face service barriers.

In 2022, 4% of people 65+ in the United States reported ever having a dementia diagnosis (Kramarow 2024). In MO, 112,000 (11%) people 65+ had Alzheimer’s in 2024 (Alzheimer’s Association (AA)). MO has 223,000 caregivers for Alzheimer’s, with 350 million hours of unpaid care (AA).

Barriers to dementia services in the healthcare system include (Waymouth et al. 2023)

• Difficulty getting formal assessments and diagnoses
• Lack of training and knowledge among healthcare workers
• Need for a family caregiver even with home and community-based services
• Lack of dementia-related education for communities and caregivers

There are national guides and financial support for dementia.

The Guiding and Improved Dementia Experience (GUIDE) Model helps people with dementia and their unpaid caregivers to navigate healthcare and social support systems (Centers for Medicaid & Medicare Services (CMS) 2024). The GUIDE Model provides:

• A defined standard approach to care
• 24/7 access to a support line
• Caregiver training, education, and support
• Pay for respite services
• Alternative payment methods
• Screenings for health-related social needs

CMS seeks out people living with dementia in underserved communities for participation in the GUIDE model with financial and technical support (CMS 2024).

The Centers for Disease Control and Prevention (CDC) provides the Healthy Brain Initiative’s Road Map which gives public health efforts a framework for action (CDC 2024). The Road Map focuses on strengthening partnerships and policies, measuring and using data, building a diverse and skilled workforce, and engaging and educating the public. The Building our Largest Dementia (BOLD) Infrastructure grants establish and support regional dementia centers, increase awareness of dementia issues among providers and the public, and identify and share scientific findings (BOLD Infrastructure for Alzheimer’s Act).

Existing State Dementia Services Coordinators have varying responsibilities.

A State Dementia Services Coordinator is an individual or team in state government that coordinates the state’s dementia programs and policies (Alzheimer’s Impact Movement 2024). Their responsibilities can include:

• Implement and update the state dementia plan
• Coordinate dementia work groups and task forces
• Work with state agencies and community organizations to meet needs and avoid service duplication
• Evaluate current services, identify gaps, recommend policies
• Increase awareness and help people access care

There are 28 states with a State Dementia Services Coordinator (Rosen personal communication, Figure 1). Several of these states have only recently passed bills to create a Dementia Services Coordinator and therefore do not have data available.

SC has the Alzheimer’s Resource Coordination Center which provides grants every year (SC Department on Aging). In 2022-23, SC funded respite care services, caregiver training, in-home activities promoting independence, support group meetings, and technology to locate and help return people with dementia that have wandered from home. They also reduced duplication in respite services.

NY’s Alzheimer’s Disease Caregiver Support Initiative provides grants to programs focusing on community infrastructure and education. (NY Department of Health 2018). In 2016-17, these programs met 90-270% of their goals for community support services, diagnostic processes, patient management and care, and physician training. For primary care physician training and respite services, these programs met 44% and 58% of their goal respectively.

WA’s Dementia Action Collaborative has staff in four state agencies and has started projects for dementia education for primary care providers, public awareness campaigns, and free legal assistance for people with dementia (WA State Department of Social and Health Services).

Figure 1. States with a Dementia Services Coordinator. Twenty-eight states have a Dementia Services Coordinator. Data from Rosen, personal communication.

References

Alzheimer’s Association (n.a.) 2024 Missouri Alzheimer’s Statistics. https://www.alz.org/media/Documents/missouri-alzheimers-facts-figures.pdf.

Alzheimer’s Impact Movement (2024) State Dementia Services Coordinator. https://portal.alzimpact.org/media/serve/id/5d23af73d75ae.

BOLD Infrastructure for Alzheimer’s Act, P.L. 115 § 406 (2018) https://uscode.house.gov/statutes/pl/115/406.pdf.

Centers for Disease Control and Prevention (2024) National Healthy Brain Initiative state and local road map. Accessed October 8, 2024. https://www.cdc.gov/aging-programs/php/nhbi/roadmap.html.

Centers for Medicaid & Medicare Services (n.a.) Guiding and Improved Dementia Experience (GUIDE) Model. Accessed June 17, 2024. https://www.cms.gov/priorities/innovation/innovation-models/guide.

Kramarow EA (2024) Diagnosed dementia in adults 65 and older: United States, 2022. National Health Statistic Reports. 203. https://www.cdc.gov/nchs/data/nhsr/nhsr203.pdf.

New York Department of Health (2018) Alzheimer’s Disease Caregiver Support Initiative. https://www.health.ny.gov/diseases/conditions/dementia/docs/eval_rpt_y1.pdf.

Rosen, Jennifer (2024) Vice President of the Alzheimer’s Association. Personal communication.

SC Department on Aging (n.a.) Alzheimer’s Resource Coordination Center (ARCC). https://aging.sc.gov/programs-initiatives/alzheimers-resource-coordination-center-arcc.

WA State Department of Social and Health Services (n.a.) Washington State Plan to Address Alzheimer’s Disease and Other Dementias 2023-2028. link.

Waymouth M, Siconolfi D, Friedman EM, Saliba D, Ahluwalia SC, Shih RA (2023) Barriers and facilitators to home- and community-based services access for persons with dementia and their caregivers. Journals of Gerontology: Social Sciences. 78(6):1085-1097. link.