The Florida Senate BILL ANALYSIS AND FISCAL IMPACT STATEMENT (This document is based on the provisions contained in the legislation as of the latest date listed below.) Prepared By: The Professional Staff of the Committee on Children, Families, and Elder Affairs BILL: SB 398 INTRODUCER: Senator Burgess SUBJECT: Awareness Program for Alzheimer’s Disease and Dementia-related Disorders DATE: March 3, 2025 ANALYST STAFF DIRECTOR REFERENCE ACTION 1. Rao Tuszynski CF Pre-meeting 2. AHS 3. FP I. Summary: Alzheimer’s disease is a type of dementia that causes an individual to lose cognitive and bodily function. It is estimated that the prevalence of Alzheimer’s disease in Florida has increased significantly, with over 580,000 individuals over the age of 65 having Alzheimer’s disease. The Department of Elder Affairs (DOEA) oversees the Alzheimer’s Disease Initiative (ADI) that provides services for individuals with Alzheimer’s disease and their family members. Services include memory disorder clinics, respite, and support services for caregivers. SB 398 requires the DOEA to contract for the development and implementation of the Alzheimer’s Disease Awareness Program. The bill specifies requirements for the program and conditions for the DOEA-contracted entity. The bill requires the Alzheimer’s Disease Advisory Committee to annually evaluate the program and determine if future funding is needed. The bill has a significant, negative impact on state expenditures and provides an appropriation to implement the bill. See Section V., Fiscal Impact Statement. The bill takes effect July 1, 2025. REVISED: BILL: SB 398 Page 2 II. Present Situation: Alzheimer's Disease and Dementia-Related Disorders Dementia is a general term for an individuals’ decline in memory, language, and problem- solving capabilities. 1 Common causes of dementia include: 2 • Alzheimer’s disease; • Cerebrovascular disease; • Frontotemporal degeneration; • Hippocampal sclerosis; • Lewy body disease; • Mixed pathologies; and • Parkinson’s Disease. Alzheimer’s disease is the most common type of dementia and is considered a progressive disease, which means symptoms worsen with time. 3 Alzheimer’s disease causes damage to the brain’s neurons, which can lead to decreased cognitive functioning and an increased need for assistance in performing daily tasks. 4 Individuals with Alzheimer’s disease may develop changes in their mood or engage in behaviors that could be dangerous, such as wandering from a safe location and being unable to retrace their steps back to safety. 5 Due to the damage to the brain’s neurons, individuals lose the ability to engage in bodily functions such as walking or swallowing and require continual care. 6 On average, individuals live with Alzheimer’s disease four to eight years after a diagnosis. 7 However, the lifespan of an individual with Alzheimer’s disease is contingent on factors such as age and co-occurring health conditions. Some individuals have lived over twenty years after receiving an Alzheimer’s disease diagnosis. 8 It is estimated that there are more than six million Americans that currently live with Alzheimer’s disease. 9 Research predicts that by 2060, there will be an expected 13 million individuals living with Alzheimer’s disease nationwide. 10 1 Alzheimer’s Association, 2024 Alzheimer’s Disease Facts and Figures, available at: https://www.alz.org/getmedia/76e51bb6-c003-4d84-8019-e0779d8c4e8d/alzheimers-facts-and-figures.pdf (last visited 2/17/25). 2 Alzheimer’s Association, 2024 Alzheimer’s Disease Facts and Figures, available at: https://www.alz.org/getmedia/76e51bb6-c003-4d84-8019-e0779d8c4e8d/alzheimers-facts-and-figures.pdf (last visited 2/17/25). 3 U.S. Department of Health and Human Services National Health Statistics Reports, Diagnosed Dementia in Adults Age 65 and Older: United States, 2022, available at: https://www.cdc.gov/nchs/fastats/alzheimers.htm (last visited 2/17/25) and Alzheimer’s Association, 2024 Alzheimer’s Disease Facts and Figures, available at: https://www.alz.org/getmedia/76e51bb6- c003-4d84-8019-e0779d8c4e8d/alzheimers-facts-and-figures.pdf (last visited 2/17/25). 4 Alzheimer’s Association, 2024 Alzheimer’s Disease Facts and Figures, available at: https://www.alz.org/getmedia/76e51bb6-c003-4d84-8019-e0779d8c4e8d/alzheimers-facts-and-figures.pdf (last visited 2/17/25). 5 Id. 6 Id. 7 Id. 8 Id. 9 U.S. Department of Health and Human Services, National Plan to Address Alzheimer’s Disease: 2024 Update, available at: https://aspe.hhs.gov/collaborations-committees-advisory-groups/napa/napa-documents/napa-national-plan (last visited 2/17/25). 10 Id. BILL: SB 398 Page 3 There are an estimated 580,000 Floridians over the age of 65 that are living with Alzheimer’s disease. 11 Due to Florida’s high population of individuals over the age of 65 (21% of Florida’s population), this number is expected to grow in the coming years. 12 The Department of Elder Affairs The Department of Elder Affairs (DOEA) is charged with administering programs and services for elders across the state of Florida, including services for those affected by Alzheimer’s disease. 13 The DOEA contracts with Area Agencies on Aging 14 that are required to ensure prevention, early intervention, and long-term care services to the elderly population in Florida. 15 There are currently 11 Area Agencies on Aging across the state, which operate as Aging and Disability Resource Centers (ADRCs). 16 The ADRCs provide residents with information about state, federal, and local programs and benefits. 17 The picture below displays the Area Agencies on Aging throughout Florida. 18 11 Florida Department of Elder Affairs, Alzheimer’s Disease Advisory Committee Annual Report (2023), available at: https://elderaffairs.org/programs-services/bureau-of-elder-rights/alzheimers-disease-initiative/ (last visited 2/17/25). 12 Id. 13 Chapter 430, F.S.; Florida Department of Elder Affairs, About Us, available at: https://elderaffairs.org/ (last visited 2/14/25). 14 Florida law defines an “area agency on aging” as a public or nonprivate private agency or office designated by the DOEA to coordinate and administer the DOEA’s programs and to provide, through contracting agencies, services within a planning and service area. Area Agencies on Aging serve as both the advocate and the visible focal point in its planning and service area to foster the development of comprehensive and coordinated service systems to serve older individuals. 15 Section 20.41, F.S. 16 Florida Department of Elder Affairs, About Us, available at: https://elderaffairs.org/ (last visited 2/14/25). 17 Id. 18 Id. BILL: SB 398 Page 4 Alzheimer’s Disease Initiative In 1985, the Legislature established the Alzheimer’s Disease Initiative (ADI), intended to provide services for individuals and families that have been affected by Alzheimer’s disease. 19 The Dementia Director, appointed by the Secretary of Elder Affairs, is responsible for providing support to memory disorder clinics throughout the state, facilitating coordination for services between a variety of providers, and monitoring data on the impact of Alzheimer’s disease in Florida. 20 Services for Individuals and Families affected by Alzheimer’s Disease Memory disorder clinics throughout the state provide diagnostic and therapeutic settings for individuals with Alzheimer’s disease. These settings allow for the research of Alzheimer’s disease and training of professionals that care for individuals with Alzheimer's disease. 21 Respite care provides temporary relief for caregivers and may be provided in conjunction with a memory disorder clinic. 22 Respite options for caregivers of individuals with Alzheimer’s disease may include: 23 • In-home care. • Facility-based care. • Specialized adult day care. • Emergency respite care. • Extended care up to 30 days. Other supportive services for caregivers may include: 24 • Case management. • Specialized medical equipment and supplies. • Caregiver counseling and support groups. • Caregiver training and relief. Alzheimer’s Disease Advisory Committee The Alzheimer’s Disease Advisory Committee (committee) is composed of stakeholders, including Ph.D. researchers, caregivers of persons with Alzheimer's disease, medical professionals, and legislative representatives. 25 Each year, the committee submits a report that details the current state-funded efforts in Alzheimer’s disease research and provides recommendations for improving Alzheimer’s disease policy. 26 19 Florida Department of Elder Affairs, Alzheimer’s Disease Initiative (ADI), available at: https://elderaffairs.org/programs- services/bureau-of-elder-rights/alzheimers-disease-initiative/ (last visited 2/17/25); Ch. 85-145, L.O.F. 20 Section 430.5015, F.S. 21 Section 430.502, F.S. 22 Section 430.502, F.S. 23 Florida Department of Elder Affairs, Alzheimer’s Disease Initiative (ADI), available at: https://elderaffairs.org/programs- services/bureau-of-elder-rights/alzheimers-disease-initiative/ (last visited 2/17/25). 24 Id. 25 Section 430.501, F.S. 26 Id. BILL: SB 398 Page 5 The committee makes various recommendations surrounding policy, research, clinical care, institutional care, and home and community-based services for Alzheimer’s disease policy. 27 In 2023, one of the committee’s recommendations identified a need for improving the distribution of information on Alzheimer’s disease research findings. 28 Alzheimer’s Disease and Related Dementias Resource Guide The DOEA is required to provide public education on Alzheimer’s disease and related forms of dementia. 29 The DOEA compiles information for the public and publishes the Alzheimer’s Disease and Related Dementias Resource Guide. 30 Information provided in the resource guide includes information such as: 31 • Warning signs of Alzheimer’s; • Protecting and improving brain health; • Next steps after an Alzheimer’s diagnosis; and • Service providers in each area throughout the state. This information is published online and is available to the public. 32 III. Effect of Proposed Changes: Section 1 of the bill creates s. 430.5016, F.S., to require the Department of Elder Affairs to contract for the development and implementation of the Alzheimer’s Disease Awareness Program. The program is intended to assist Florida residents that are affected by Alzheimer's disease and dementia-related disorders with obtaining reputable national research. At a minimum, the program is required to: • Include a website and other related electronic resources that address: o The advantages of early detection and diagnosis; o Methods for reducing risk factors; o The importance of brain health; o Scheduling screenings and assessments for Alzheimer’s disease and dementia-related disorders with a licensed health care provider; o Healthy aging; o Recent developments in Alzheimer's research and dementia-related disorders and the availability of clinical trials; o Community resources available for those affected by Alzheimer's disease and dementia- related disorders; and o Any related topics as deemed appropriate by the DOEA. 27 Florida Department of Elder Affairs, Alzheimer’s Disease Advisory Committee Annual Report (2023), available at: https://elderaffairs.org/programs-services/bureau-of-elder-rights/alzheimers-disease-initiative/ (last visited 2/17/25). 28 Id. 29 Section 430.5025, F.S. 30 Department of Elder Affairs State Health Improvement Plan, Alzheimer’s Disease and Related Dementias Resource Guide, available at: https://www.floridahealth.gov/provider-and-partner-resources/research/florida-health-grand- rounds/SHIPPA9ADRDResourceGuide_final.pdf (last visited 2/17/25). 31 Id. 32 Id. BILL: SB 398 Page 6 • Use the DOEA’s Alzheimer's Disease and Related Dementias Resource Guide as part of the program materials. • Promote health care provider education in partnership with the Department of Health to help improve care for patients with Alzheimer's disease and dementia-related disorders. • Include print and digital advertising. • Include a statewide, mobile, in-person outreach program that prioritizes those in underserved communities and provides information on issues relating to Alzheimer's disease and dementia-related disorders. The bill allows the program to provide referrals to the DOEA and provide information regarding available community resources for Alzheimer's disease or dementia-related disorders. The bill sets requirements for the entities that the DOEA can contract with for the development and implementation of the program. The statewide nonprofit organization must have a history of focusing on those affected by Alzheimer's disease and dementia-related disorders and have the organizational capacity to successfully manage a statewide program. The entity is required to collaborate with other relevant state agencies and private organizations to develop and implement the program. The bill requires the Alzheimer’s Disease Advisory Committee to annually evaluate the program and make recommendations to the DOEA and the Legislature concerning the need for future funding for the program. Section 2 of the bill appropriates $1.5 million in nonrecurring General Revenue funds to the DOEA to administer the Alzheimer's Disease Awareness Program for the 2025-2026 fiscal year. Section 3 of the bill provides an effective date of July 1, 2025. IV. Constitutional Issues: A. Municipality/County Mandates Restrictions: The bill does not appear to require cities and counties to expend funds or limit their authority to raise revenue or receive state-shared revenues as specified by Article VII, s. 18, of the State Constitution. B. Public Records/Open Meetings Issues: None. C. Trust Funds Restrictions: None. D. State Tax or Fee Increases: None. BILL: SB 398 Page 7 E. Other Constitutional Issues: None Identified. V. Fiscal Impact Statement: A. Tax/Fee Issues: None. B. Private Sector Impact: None. C. Government Sector Impact: The bill appropriates $1.5 million in nonrecurring General Revenue funds to the DOEA to administer the Alzheimer's Disease Awareness Program for the 2025-2026 fiscal year. VI. Technical Deficiencies: None. VII. Related Issues: None. VIII. Statutes Affected: This bill creates s. 430.5016, Florida Statutes. IX. Additional Information: A. Committee Substitute – Statement of Changes: (Summarizing differences between the Committee Substitute and the prior version of the bill.) None. B. Amendments: None. This Senate Bill Analysis does not reflect the intent or official position of the bill’s introducer or the Florida Senate.