Alzheimer’s caregivers need help from Congress

Being a caregiver for a loved one living with Alzheimer’s disease is no simple task. It is emotionally challenging, time-consuming and extremely costly. I know this because I became a caregiver for my mother, Sally, when she was diagnosed with the devastating disease in 2015. And I am not alone — there are more than 280,000 of us in Massachusetts spending a combined total of more than 406 million hours each year as unpaid caregivers to those with Alzheimer’s and other dementia.

As my mother’s health care proxy, I oversaw all her doctors’ appointments, which included locating and booking every specialist I could find that might be able to help her. I coordinated all aspects of her care, managed her medications, and made more heartbreaking medical decisions than I care to remember. As a caregiver, you essentially become a full-time administrator, managing all appointments, phone calls and transportation. I was driving my mother from Western Massachusetts to Boston to get treatment, sometimes several times a week.

However, despite how many of us are Alzheimer’s caregivers, I was the exception in many ways: I was in a position to take three years off from working and lived off my personal savings so that I could take care of my mother with my dad. To this day, six years later, I am still rebuilding my life from the devastating emotional and financial tolls Alzheimer’s disease took. I cannot imagine how an elderly couple, a person living on their own or family members who don’t have the resources needed can possibly manage it.

My experience was eyeopening. I saw how many times that — without a vocal advocate — my mother would have fallen through the cracks of a health care system that’s not set up for people living with dementia. The already complex system becomes even more complicated for people living with Alzheimer’s, who may not even be able to make a phone call on their own.

At the time, I was consumed by the day-to-day tasks and overwhelmed by the devastating emotional impact of caring for my mother as she battled Alzheimer’s. With several years having elapsed since she passed away, I can more fully appreciate the economic impact that her illness had on me, which made me think about the crippling financial impact it must have on our nation as a whole. It’s no wonder that Alzheimer’s has been known as the most expensive disease in America for the better part of the last decade.

Yet, our nation’s health care system is not set up to support individuals or caregivers who must provide significant levels of health care support to people living with dementia.

Thankfully, the path to better, more efficient dementia care is within our reach. Bipartisan legislation called the Comprehensive Care for Alzheimer’s Act (S.1125/ H.R.2517) would address shortcomings in the way dementia care is currently delivered, reducing the burden on both caregivers and our health care system. This legislation would ask the Center for Medicare and Medicaid Innovation to implement a dementia care management model. The model would establish high standards of care, pay providers for the quality of patient care, ensure caregivers are supported, and require outreach to underrepresented populations.

Dementia care management allows caregivers to navigate health care and social support systems more seamlessly and helps patients obtain more timely access to care. Comprehensive dementia care has also been shown to reduce costs while providing better quality care.

I call on Sen. Elizabeth Warren to support this critical legislation that will give families and caregivers the support they need to take care of their loved ones with Alzheimer’s disease and other forms of dementia.