Alzheimer Law Allows Younger Patients to Gain Eligibility for Grants, Programs

Alzheimer disease (AD) affects more than 6 million individuals in the United States and is emotionally and financially demanding for caretakers.¹ The Older Americans Act (OAA) was passed in 1965 because of concern by policy makers and the public for the lack of community social services available to individuals 60 years and older.² This law focuses on delivering community and home-based support for individuals in need, including those with low incomes, members of certain minority groups, patients with limited proficiency in English, residents of rural areas, and those who are at risk of entering a nursing home facility.³ Support provided under this legislation includes “nutritional programs, in-home services, transportation, legal services, elder abuse prevention, and caregiver support.”³

Under the OAA, those with younger-onset AD or those diagnosed before the age of 60 were unable to use services covered by this law because of age restrictions, even if they had been deemed in need.³ This was a huge gap in care for those affected by younger-onset AD and other types of dementia, placing further burdens on caretakers, as there was little to no government or privately funded assistance available for these patients.²

An estimated 200,000 individuals in the United States have younger-onset AD, with an average age of 49 years.^2,3 Many individuals with this diagnosis may even begin to show symptoms as early as their 30s.² Individuals with younger onset AD may be in the early, middle, or late stage of disease progression. Previously, as symptoms progressed, caretakers, family, and friends could not receive assistance to help these patients.² Individuals who lived with younger-onset AD faced many unique challenges related to careers, finances, and relationships. In addition, receiving a diagnosis of younger onset AD can often be stigmatizing, affecting quality of life and self-esteem.² Further, because of the disease’s early onset, other individuals often do not believe these patients have AD. These challenges can quickly pile up without a strong support system in place, contributing to an accelerated decline in overall health.³

To combat the disparity in assistance for those with younger-onset AD, Congress passed the Supporting Older Americans Act of 2020 in March 2020, which had included provisions of the Younger Onset Alzheimer’s Disease Act, which Congress did not pass.⁴ Under this legislation, individuals with younger-onset AD became eligible to receive and use certain federal grants and programs that previously only supported older adults with this illness.⁵

Through this reauthorization of the OAA, those affected by younger-onset AD now have access to services such as “nutritional services, supportive services, and respite care through the National Family Caregiver Support Program.”³

Gaining access to these programs can drastically improve the quality of life for both patients and caregivers affected by younger-onset AD, helping to relieve potential stressors in their lives. The implementation of the law drew attention to health care disparities, which are defined as “differences between groups in health insurance coverage, access to and use of care, and quality of care,” according to the CDC.⁶

Previously under the OAA, many care and support services were completely inaccessible to those with younger-onset AD and other types of dementia because of the age restrictions.² An additional barrier was that there are relatively fewer individuals affected by younger-onset AD, so community and private services largely did not exist for this population.²

Pharmacists should familiarize themselves with resources designed to serve individuals with younger-onset AD so they can provide this information to patients. The passage of this act was a great step toward a brighter, more equitable future for patients of all ages.

References

1. 2022 Alzheimer’s disease facts and figures. Alzheimer’s Association. Accessed October 10, 2022. https://www.alz.org/media/Documents/alzhei-mers-facts-and-figures-infographic.pdf

2. Older Americans Act. Administration for Community Living. Updated July 5, 2022. Accessed October 10, 2022. https://acl.gov/about-acl/authoriz-ing-statutes/older-americans-act

3. The Supporting Older Americans Act of 2020 signed into law. News release. Alzheimer’s Association. March 25, 2020. Accessed October 24, 2022. https://www.alz.org/news/2020/the-supporting-older-americans-act-of-2020-signed

4. Younger-Onset Alzheimer’s Disease Act of 2019 introduced in Congress. News release. Alzheimer’s Association. March 27, 2019. Accessed October 10, 2022. https://www.alz.org/news/2019/younger-onset-alzheimer-s-dis-ease-act-of-2019-intr

5. Younger Onset Alzheimer’s Disease Act, S. 901, 116th Cong (2019-2020). Accessed October 10, 2022. https://www.congress.gov/bill/ 116th-congress/senate-bill/901#:~:text=This%20bill%20makes%20individuals%20with, only%20individuals %2060%20and%20older

6. Barriers to equity in Alzheimer’s and dementia care. CDC. Updated June 2, 2021. Accessed October 10, 2022. https://www.cdc.gov/aging/publications/features/barriers-to-equity-in-alzheimers-dementia-care/index.html

About the Authors

Hannah S. Mercado is a PharmD candidate at the University of Kentucky College of Pharmacy in Lexington.

Joseph L. Fink III, JD, DSC (HON), BSPHARM, FAPHA, is professor emeritus of pharmacy law and policy at the University of Kentucky College of Pharmacy in Lexington.