Lieutenant Governor Sabrina Matos and the Rhode Island Department of Health launched an updated Alzheimer’s Disease and Related Disorders State Plan Feb. 15 that outlines state health goals pertaining to the disease from 2024 to 2029. The new plan includes nine strategic objectives focused on empowering Rhode Islanders to “embrace brain-healthy lifestyles” and “achieve an optimal quality of life.”
Currently, some 24,000 Rhode Islanders live with some form of dementia, and the state expects at least a 12.5% increase in those numbers by 2025, according to the plan.
The growing number of ADRD patients in Rhode Island is part of a national increase in those suffering from the disorders.
“In 2023, an estimated 6.7 million Americans were living with the disease. This number is expected to more than double by 2060,” Victoria O’Connor, ADRD program manager at RIDOH, wrote in an email to The Herald. ADRD diseases are chronic illnesses that are “growing in impact,” she added.
Rhode Island’s population is aging, with adults aged 60 and older constituting 23% of the state’s population in 2020. But while Alzheimer’s disease tends to be associated with older adults, people in their thirties and forties can also be diagnosed with early-onset dementia, according to a statement by Matos and Interim Director of Health Utpala Bandy that was included in the plan.
The state hopes to use this available public health data to “inform public health decision-making and build a framework to prioritize the health needs of its aging population,” the report reads.
According to Thomas Bayer, an assistant professor of geriatrics and palliative medicine, those numbers are not unexpected: “When a population ages, we expect an increase in the prevalence of dementia,” he said. Bayer serves as the representative of the adult primary care community on the Rhode Island Advisory Council on Alzheimer’s Disease and Related Disorders, the committee that drafts and edits the plan.
The plan follows increasing interest in dementia and related disorders, Bayer explained. He noted that as the baby boomer generation ages past 65, national organizations like the National Institute of Health have prioritized ADRD research.
“As a society, we are thinking about how we can better meet the needs of older persons,” he wrote in a separate email to The Herald. “Policies like the state's plan for dementia reflect that process.”
The plan “designs from the margins” — centering innovation on the most marginalized users of a product — to bolster accessibility of ADRD care regardless of patients’ socioeconomic status.
“The goal is that everything from healthcare to transportation to housing and retail will be prepared to meet the needs of persons with dementia,” Bayer wrote. That way, “people living with dementia can live with dignity even if they don't have tons of money to pay for the best services.”
In addition to establishing frameworks of care for the growing population of dementia patients, the plan aims to alleviate the toll on “care partners,” or family members who act as unpaid caregivers for their afflicted loved ones.
According to O’Connor, about 40,000 Rhode Islanders provide unpaid care to loved ones diagnosed with ADRD. These care partners invest 51 million hours of unpaid care annually, and over half must further consider their own chronic conditions, according to the plan.
The state seeks to provide care that will prevent financially disadvantaged care partners from “taking on debt, giving up assets or deprioritizing the treatment needed to manage their own health conditions.”
The updated plan has several multifold purposes, according to a press release from Matos’s office, including to increase the accessibility of care for ADRD patients, address health equity issues surrounding dementia care and promote local support systems for patients and care partners.
RIDOH identified four sectors — community, the health system, the workforce and public health — to focus on in in the implementation of the plan’s recommendations. In 2020, RIDOH received funding for ADRD programs from the Centers for Disease Control and Prevention, and the department has since launched statewide initiatives aligning with the plan’s goals, O’Connor said.
The CDC granted RIDOH’s ADRD Program a five-year funding award to support the state’s ADRD initiatives from 2023 to 2028, she added. The program will continue to “identify resources and partnerships needed to implement the State Plan.”
Success will be measured by both tangible and intangible impacts on patient lives, according to Bayer, who emphasized the importance of systemic approaches to improving healthcare. He noted that while medications have improved in the last 10 years, “the experience most patients have while navigating the healthcare system has probably gotten worse.”
RIDOH’s next step is to draft an “Implementation Plan” that will outline a timeline for implementation and provide specific benchmarks to measure success, according to O’Connor. She added that “the Implementation Plan will be consistently reviewed with the ADRD Advisory Council to ensure there is continuous progress.”
Bayer noted that “we can improve care by listening to the end users of health care and trying to meet their needs better.”
Ranjana “Jaanu” Ramesh is a Bruno Brief-er, photographer and Senior Staff Writer covering science & research. She loves service, empathetic medicine and working with kids. When not writing or studying comp neuro, Jaanu is outside, reading, skiing, or observing Providence wildlife (ie: squirrels).
