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Jill Carney is the director of Maine state government relations at the Alzheimer’s Association. If you need support, please call the Alzheimer’s Association’s free 24/7 Helpline at 800.272.3900 or visit alz.org for information and resources.
I moved back home to Maine in 2021 to be closer to my dad. He was repeating himself more often and, as a lifelong reader, was experiencing new difficulties reading books — warning signs of the same disease his father and brother died of. His primary care doctor said it was just “normal aging.” It was not. But it took four years and multiple visits to other doctors to get the true diagnosis of Alzheimer’s.
What did that delay cost us? Years we could have spent visiting family and making memories with intention. The chance to participate in clinical trials or pursue treatment when it would have been most effective. Education and support in the earliest stages of this disease. Instead, we have been playing catch-up ever since.
My story will be all too familiar to the 29,600 people living with Alzheimer’s in Maine and their 66,000 family caregivers. I hear from many of them. Those who have struggled to navigate the health care system in search of a diagnosis and help managing this disease. Those who cannot access the assistance they need to live safely.
Alzheimer’s is a devastating disease, not only because of the changes it brings to memory, behavior, and personality, but also because of what it asks of the people living with it and those who love them. Over many years, they need increasing levels of support, eventually around-the-clock care. Most of that care falls to unpaid family caregivers who carry near-constant responsibility and worry, along with physical strain, often at great financial cost.
Dementia is also a growing public health crisis, and Maine, with the oldest population in the nation and a large rural footprint, is especially exposed. Nationally, the number of Americans with Alzheimer’s is projected to nearly double by 2060. Maine must be prepared, and we are not.
The good news is that bipartisan federal investments in dementia and brain health research long championed by Sen. Susan Collins and Rep. Chellie Pingree, and landmark legislation establishing the national infrastructure to fight Alzheimer’s, authored by Collins, are yielding ground-breaking advancements that will directly improve the lives of people affected by this disease. Within the past five years, the medical landscape has changed dramatically. We now have disease-modifying treatments, simple blood tests that will help with earlier diagnosis, clinically validated means of prevention, and safer medication to help manage agitation, one of Alzheimer’s most challenging symptoms.
We are even on the cusp of screening for Alzheimer’s and intervening early, before symptoms occur. This would revolutionize the standard of care for Alzheimer’s, bringing it in line with that of other major diseases, such as cancer, heart disease and diabetes.
As scientific advancements change the Alzheimer’s landscape, states must meet this moment and take urgent action to ensure these advancements benefit those who need them.
Maine’s next governor and Legislature can start now. They can equip the Maine Center for Disease Control and Prevention to lead a strong public health response and encourage conversations about cognitive health before concerns arise. They can shorten the path to an accurate diagnosis and ensure equitable access to treatment, while helping clinicians adopt best practices in dementia care. They can ensure family caregivers are connected quickly to education and support and expand services that let people age safely at home, reducing unnecessary hospitalizations. And when around-the-clock care is needed, they can make sure a well-trained and supported essential care workforce exists in every corner of the state.
Adopting policies that reduce risk, increase access to diagnosis and treatment, and ensure quality care will not only improve the lives of Mainers affected by dementia, but also reduce the lifetime cost of this disease. This is critical to relieving rising pressure on state budgets and alleviating the strain on our hospitals and health and long-term care systems.
National progress has opened the door to a new era for Alzheimer’s care. Our next governor and Legislature must now lead Maine through it.