BOSTON, Mass. (SHNS)–Advocates are calling for the state to take steps to increase the dementia caretakers workforce, coordinate a clearer public health infrastructure for those living with the disease, and to remove the age requirement for those with early-onset Alzheimer’s to qualify for certain in-home services.

There are over 130,000 people in Massachusetts living with Alzheimer’s disease, and case counts are expected to climb in the coming years. The Alzheimer’s Impact Movement (AIM) predicts that the prevalence of the disease will increase by 25 percent in Massachusetts over the next decade.

Meanwhile, as with most other home care and health care services, the workforce serving those with Alzheimer’s and dementia has been depleted since the onset of the COVID-19 pandemic. Workforce shortages are currently causing wait lists for geriatrician appointments, home-based services and long-term care.

Health care worker shortages have increased the burden on the 284,000 Massachusetts residents who take care of a family member with the disease, AIM said, who are already clocking in 411 million hours of unpaid work.

“The need is really to start thinking about Alzheimer’s disease and dementia as a public health issue,” said Jim Wessler, CEO of the Massachusetts/New Hampshire Chapter of the Alzheimer’s Association, at a legislative briefing about advocates’ priorities on Tuesday afternoon.

In 2020 MassHealth spent over $1.75 billion assisting families with the cost of caring for someone with Alzheimer’s disease, according to AIM. That figure is expected to rise by over 15 percent by 2025, when the state expects over 150,000 people will be living with the disease.

The Alzheimer’s advocacy group is throwing its weight behind four bills that they say would lessen the financial burden of care, and improve the health outcomes for Massachusetts residents living with the disease.

A bill introduced by Sen. Jason Lewis of Winchester (SD 945) and Rep. Danielle Gregoire of Marlborough (HD 830) would require MassHealth to offer a “dementia care coordination” program to those with a Massachusetts Senior Care Options health plan who have been diagnosed with Alzheimer’s disease or dementia. The program, developed by the Alzheimer’s Association, provides guidance to family caregivers, including symptom management strategies, communication techniques, legal and financial issues, safety recommendations and referrals to support services, the bill says.

Similar legislation filed by Gregoire and Lewis last session died in the House Ways and Means Committee.

The fiscal year 2023 state budget included $100,000 for dementia care coordination for the first time, after the pandemic maxed out the Alzheimer’s Association’s capacity to meet demand for the program. Gov. Maura Healey did not include funding for the program in her fiscal year 2024 state budget, and the Alzheimer’s Association is asking for $300,000 toward the program next fiscal year. They say this increased funding would help over 1,000 families.

Chelsea Gordon of the Alzheimer’s Association said dementia-related programs are often included later in the budget process, and the organization hopes to see the House and Senate prioritize dementia care coordination “as they are relatively low cost and can have a huge impact on families.”

In addition to expanding this guidance program, the Alzheimer’s Association is asking the Legislature to incentivize careers and create pathways for advancement in the direct care workforce.

A Rep. Tram Nguyen (xxx HD 634) of Andover and Sen. Paul Mark of Becket (SD 1909) bill to address this problem would establish a certified nursing assistant pilot program to offer free training and testing to up to 1,000 individuals in three areas of the state experiencing high levels of direct care workforce shortages.

The program would also connect nurses with employers and offer $1,000 bonuses to employed care providers a year after working in a long-term care facility or with home- and community-based service providers.

“When the workforce is how it is now, that burden falls further on families and family caregivers,” Gordon said. “When caregivers are further burdened and are hurting more, because they already are, this also hurts other areas of our economy and our workforce.”

One in six people caring for a family member with Alzheimer’s or dementia had to quit their jobs, she said. There are currently more than 82,000 home health and personal care aides in Massachusetts and dementia advocates predict the state will need to increase the number of workers by 20 percent by 2028.

State lawmakers have also submitted bills aimed at mitigating the home health care strain by introducing legislation to reform rate-setting for care workers.

Rep. Denise Garlick of Needham and Sen. Adam Gomez of Springfield filed legislation (HD 3108 / SD 1078) to develop a public awareness campaign on brain health and to create a new position within the Executive Office of Health and Human Services to direct dementia care and coordination. The dementia director would be tasked with coordinating the implementation of the state’s 2021 Alzheimer’s Disease State Plan and coordinate access to services across organizations.

The last piece of legislation that advocates highlighted during their briefing on Tuesday afternoon is a bill that Rep. Bruce Ayers of Quincy has filed for the last four consecutive legislative sessions. The bill would remove the requirement that a person be at least 60 years old to qualify for the MassHealth frail elderly waiver for anyone diagnosed with early-onset Alzheimer’s disease. The waiver makes home- and community-based services available to people who require the level of care a nursing facility could provide but prefer to remain in the community.

Ayers told the News Service last year when he filed the same bill that he first proposed the legislation after hearing from a constituent, a Quincy firefighter whose wife had been diagnosed with early-onset Alzheimer’s at the age of 51. He told Ayers he needed the kind of around-the-clock care that a memory care unit could provide.

“Alzheimer’s is not just an older person’s disease that it is often thought of,” Gordon said. “It can be uniquely challenging when it happens to someone in their 40s, 50s, 60s versus someone in their 80s or 90s. They might be in a very different stage of life when it comes to family and work and finances.”