For an individual diagnosed with dementia or experiencing a severe decline in mental abilities that interferes with daily life, a daunting list of immediate questions, concerns and challenges emerges. Is living at home safe? What about work? Is medication effective? How quickly will symptoms progress? What services can help the person adjust and cope with the condition, especially given the complexity of each issue?
Many patients, their families and caregivers in the Merrimack Valley turn for guidance to the Alzheimer’s Association, whose Massachusetts/New Hampshire Chapter is headquartered in Waltham with regional offices in Springfield, Worcester, Raynham and Bedford, N.H. The Association’s mission, according to its website, is “To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.” Note that Alzheimer’s disease and dementia are not synonymous. Dementia is not a disease but a group of symptoms associated with memory loss and cognitive impairment. According to AZT.org, “Alzheimer’s is the most common type of dementia.”
In addition to offering an abundance of free resources, including a 24/7 helpline, the nonprofit organization is spearheading landmark legislation and research. The timing of these advancements is critical, according to Susan Antkowiak, vice president of programs and services for the Alzheimer’s Association’s Massachusetts/New Hampshire Chapter.
“Dementia is the most serious health care epidemic of the 21st century, and the most expensive,” she says. According to the Alzheimer’s Association, an estimated 5.7 million Americans are living with dementia, including more than 130,000 Massachusetts residents. The associated costs borne by the country exceed $277 billion annually, with a projected increase to $1.1 trillion by 2050.
“If left uninterrupted,” Antkowiak says, “dementia has the potential to devastate our health care system and economy while destroying millions of lives. It can’t get any more dire than that.”
To combat such a scenario, the Alzheimer’s Association advocated for the an Alzheimer’s and related dementias law in Massachusetts, with local support from state Sen. Bruce Tarr and former state Sen. Barbara L’Italien. The Mass Alzheimer’s and Related Dementias Act (H.4116) created a state plan to ensure coordinated government resources for an estimated 15 percent increase in Alzheimer’s cases by 2025. It was signed into law on August 9.
The new legislation also creates an advisory council and addresses issues in health care settings. At least 50 percent of Americans with the illness are not diagnosed, and of those who are, less than half are told of their diagnosis according to the Alzheimer’s Association. Antkowiak, who serves on the Alzheimer’s and Related Dementias Acute Care Advisory Committee, says these gaps rob individuals with dementia and their families of a window of empowerment during which they can employ symptom management strategies and discuss longer term planning options while living safe and more satisfying lives.
The law makes Massachusetts the first state in the country to require dementia-specific continuing education training for physicians, physician assistants, registered nurses and nurse practitioners as a condition of licensure and renewals. It further allows health care providers to share the diagnosis with a patient’s family (within existing state and federal privacy guidelines) to ensure that help is available in planning and managing the devastating impact of the disease.
According to the Centers for Medicare & Medicaid Services, Massachusetts has the sixth-highest rate of hospital readmissions for patients with dementias, including Alzheimer’s disease. To improve the cost effectiveness and quality of care, hospitals are now required to develop and implement an operational plan for specialized training of clinical and nonclinical staff.
As a result of recommendations from the Elder Protection Services Special Commission Report, training standards are additionally mandated to assist caseworkers in protecting elders with dementias from neglect or financial, physical and emotional abuse.
Another potential game changer is the increase in federal funding for research at the National Institutes of Health in Bethesda, Maryland. In what Antkowiak calls “an incredible success story in terms of the power of bipartisanship and advocacy,” annual funding has soared over the past five years from $562 million in 2014 to $2.3 billion.
In 2018, preliminary results from the federally funded SPRINT MIND Study showed significant reductions in the risk of mild cognitive impairment — often a precursor to dementia — by lowering systolic blood pressure.
Still underway is the Alzheimer’s Association’s U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER), a two-year clinical trial launched last year to evaluate whether older adults can reduce the risk of cognitive decline through lifestyle interventions such as exercise, nutrition, cognitive and social stimulation and management of clinical conditions.
“For the first time, we are testing preventative measures in the fight against Alzheimer’s disease through lifestyle intervention,” Antkowiak says. “This is vitally important in dispelling the misconception that memory loss is a normal part of aging, because it is not. Believing otherwise causes us to miss opportunities to understand, prevent and ultimately cure this horrific disease while supporting those with dementia in living their most vibrant life possible.”
The Alzheimer’s Association offers a free, 24/7 helpline at (800)272-3900. For more information about educational conferences, coping strategies, support groups, meetups and other support services, visit ALZ.org/manh.
Check back as we continue our series on Dementia in the MV all month-long, or pick up the March/April issue of Merrimack Valley Magazine.