Dr. Glen R. Finney, a Pennsylvania-based neurologist, has a grim assessment of the state of existing infrastructure to treat and care for dementia patients: “The state is poor.” Courtesy photo

A critical shortage of clinicians and front-line workers to support increasing numbers of Alzheimer’s patients is impacting dementia care, advocates say, leaving families with limited options and raising concerns about the health care system’s ability to care for an aging population.

Experts say there is a desperate need to find more primary care physicians, neurologists, home health aides and personal care aides to support the increase in Alzheimer’s patients expected by the end of the decade.

The rising demand comes on top of an existing staffing shortage exacerbated by the COVID-19 pandemic, when a number of long-term care workers left the profession.

While workforce shortages are affecting the entire health care sector, the impact has been particularly hard for the dementia care industry, said Doug Pace, senior director of long-term and community-based care at the Alzheimer’s Association, a Chicago-based advocacy group.

“The prevalence of Alzheimer’s disease is increasing and along with it the need for the paid workforce — whether that’s in diagnosing and treating or caring for those people living with the disease,” he said. “Right now, both of those groups are facing significant shortages.”

More than 6 million Americans are living with Alzheimer’s. By 2050, this number is projected to rise to nearly 13 million, according to the association.

Meanwhile, an estimated 1.2 million additional direct care workers will be needed by 2030 to care for the growing population of people living with dementia.

“That’s more new workers than any other single occupation in the U.S.,” Pace said, “so the needs are obviously great.”

‘Poor’ state

There at least 20 states with dementia neurology deserts, where the ratio of neurologists to patients is expected to be 10 per 10,000 people with dementia by 2025.

“We know that dementia care physicians are critical for making sure that people to get that timely and accurate diagnosis,” Pace said. “A lack of those folks could mean a delay in treatment or care.”

In Alabama, there were 33 geriatricians in 2021. That number will need to increase by nearly 600% by 2050 in order to meet the care demands of the 10% of the projected number of people 65 and older with Alzheimer’s and other forms of dementia, according to the Alzheimer’s Association.

Indiana had 66 geriatricians in 2021, but will need to increase that number to 897 by 2050 to meet demands, the group said.

Texas will need another 3,400 geriatricians by 2050 to meet the demand over the next three decades, while Pennsylvania will need to add another 1,500 geriatricians, according to the association.

Dr. Glen R. Finney, a Pennsylvania-based neurologist, has a grim assessment of the state of existing infrastructure to treat and care for dementia patients.

“The state is poor,” said Finney, a board member of the Alzheimer’s Association Greater Pennsylvania Chapter and director of the Geisinger Memory and Cognition Program.

There aren’t enough memory centers to provide a clinical diagnosis of dementia, Finney said. The biggest needs are in care and support, he said.

Pennsylvania had 175,140 home health and personal care workers in 2020 but will need to increase that by 22% by the end of the next decade, according to the Alzheimer’s Association.

Texas, which had 320,780 home health and personal care aides in 2020, will need to increase that by 30.5% by 2030 to meet the expected demand, according to the Association.

Michigan will need to boost its personal care workforce by 25% to nearly 90,000 workers, the data shows.

Working for ‘little money’

Janice Guzman put her dreams of a career in criminal justice on hold to care for her 83-year-old mother, who has Alzheimer’s and Parkinson’s disease. She said the pay is low and personal care workers don’t get much support for the care they provide to loved ones.

“We’re doing this for very little money,” the Massachusetts woman said. “That’s why there’s a shortage of PCAs (personal care aides), why people are leaving the field because they’re not paid enough.”

The long-term dementia care field has been struggling for years to fill existing direct care positions, Pace said, with an estimated 64% leaving the profession annually.

In nursing homes, the percentage is much higher, averaging 99%, he said. The average personal care worker is paid about $14.25 per hour, he said.

“It’s affecting the ability for some of these nursing homes, assisted living facilities and home health care to admit new patients,” Pace said. “Or in some places, closing whole portions of their buildings if they don’t have enough staff.”

Other advocacy groups echo those concerns and are calling on Congress to take steps to boost the nation’s dementia care workforce.

“The entire long-term care industry is facing a workforce crisis, which was exacerbated by the pandemic,” the American Health Care Association and National Center for Assisted Living said in a statement. “Caregivers are burned out, and long-term care providers have limited resources to compete for workers.

“To prepare for a growing elderly population, many of whom will be living with dementia, we need supportive measures from policymakers that will increase workforce recruitment and retention,” the groups said.

A 2020 report by the American Public Health Association said a failure to strengthen the dementia care workforce “will increasingly limit the ability of people living with dementia to access quality services and supports, adding to health, social and economic burdens for individuals, families and society.”

In Congress, lawmakers have filed legislation that would boost wages for long-term care workers, establish a pipeline of foreign-born workers to fill existing vacancies, and expand direct care workforce training and advancement opportunities through existing federal programs, among other recommendations.

Nick LaMalfa, operations manager for Maxim Healthcare Services, which provides personal care workers in Texas, Pennsylvania and other states, said the staffing crisis in home care work has reached a crisis level.

“I can say with certainty that I’ve never experienced the workforce shortage like the one we’re dealing with today. Home care workers are leaving the sector at a faster pace than they are entering,” he said during a recent legislative hearing in Massachusetts.