A little more than a decade ago, my siblings and I joined the ranks of adult children who were caring for a parent impacted by dementia. Though we didn’t define ourselves as caregivers, Webster’s dictionary did. And so we were added to the list of 11 million Alzheimer’s caregivers providing an estimated 18 billion hours of unpaid care each year. The 2023 Alzheimer’s Disease Facts and Figures report, released last month, provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, and care costs. This year’s report also examines the capacity of the specialty workforce essential for diagnosis and ongoing care. The number of people aged 65 and older with Alzheimer’s continues to grow. An estimated 6.7 million Americans in this age group are living with Alzheimer’s dementia, up from 6.5 million a year ago.
In New York, 410,000 people over 65 are living with Alzheimer’s today, and that number is expected to increase to 460,000 within the next two years. With fewer than 570 geriatricians practicing statewide, it is anticipated that 44 percent more specialists will be needed by 2050 to meet the demand. In 2020 there were 510,870 home health and personal care aides in New York state. More than 39 percent more direct care workers will be needed if the expected increase is realized. These numbers are staggering and, frankly, hard to fathom. But what do they really mean? They mean that the shortage of dementia care specialists will be a barrier to a timely and accurate diagnosis. In addition, a lack of diagnosis will translate to a delay in treatment, care delivery, and supportive services.
They also mean that with more than half of primary care physicians caring for patients living with Alzheimer’s, there won’t be enough dementia care specialists to meet patient demands. Direct care workers, including nurse’s aides, nursing assistants, home health aides, and personal care aides, play a vital role in caring for people living with Alzheimer’s in private homes, community-based settings such as adult day services, and residential care, skilled nursing homes, and elsewhere. Nationwide, an additional 1.2 million direct care workers will need to be recruited between 2020 and 2030 – more new workers than in any other single occupation in the United States. And while more direct care workers will be needed, according to the Facts and Figures report, the long-term care field is already struggling to fill existing direct care vacancies.
In addition, turnover rates are high in this workforce – estimated at 64 percent annually for those providing home care and 99 percent for nursing assistants within nursing homes. Our own family experienced some of the direct care workforce issues identified in the report. However, after countless sleepless nights and missteps because of turnover issues, absenteeism, and dishonesty, ultimately, we were fortunate enough to find three kind and trustworthy angels who, because of their tender care and devotion, afforded my dad the opportunity to celebrate his final birthday in his own home.
The Alzheimer’s Association advocates for public policy reforms to strengthen and stabilize the direct care workforce. Low wages lead to turnover and understaffing. The most recent national data shows that the median wage for direct care workers is just $14.27 per hour. Due to low wages and the high prevalence of part-time positions, median annual earnings are less than $22,000. Fortunately, many organizations in our community have raised the minimum wage for direct care workers to stem turnover and entice individuals to enter and stay in the direct care field. Given the enormous impact Alzheimer’s has on individuals living with the disease, their families, and our nation as a whole, it must remain a public health priority. With a robust National Plan in place to address Alzheimer’s disease, and annual research funding guidance provided to the United States Congress by the National Institutes of Health (NIH), it is imperative that the federal government renew its commitment to the fight against Alzheimer’s.
Much progress has been made over the last decade, thanks in large part to the National Alzheimer’s Project Act and the Alzheimer’s Accountability Act, with both pieces of legislation set to expire in 2025. But updated legislation is critically needed for people living with Alzheimer’s and those who care about them. The advocacy efforts of the Alzheimer’s Association and the Alzheimer’s Impact Movement have been instrumental in influencing Congress to pass major annual funding increases at the NIH. But still, more work remains. There is a role for all Americans to play in supporting public policy efforts aimed at enhancing care and support services for people living with Alzheimer’s and their families and the call to bolster funding for research that can advance treatments that will one day lead to a cure. I will continue to beat the drum for my dad and the 6.7 million other people living with dementia until Alzheimer’s is just a distant memory. Won’t you join me?
