Providing caregivers with the tools they need

We all forget things from time to time. But for some, it’s not just a quick slip of the mind; it’s the initial symptom to a life-changing diagnosis of Alzheimer’s and a new and uncertain reality. I know, because I watched and helped care for my mother as this disease slowly took her memories, independence, and life away from her. 

My mother’s story isn’t unique. Today, more than five million Americans have Alzheimer’s, and a new person develops the disease every 66 seconds. I also know that means the number of people stepping up – just as I did – to devote their time and attention to their loved one’s care will continue to rapidly rise.

Last year, 15.9 million families and friends across the United States provided 18.2 billion hours of unpaid care to those with Alzheimer’s and other dementias.

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Statistically, that care is valued at $230.1 billion – but this number does not accurately represent the substantial emotional, financial and physical toll caregivers experience while taking care of the person they love. It’s a fact that I will highlight at this week’s “Cost of Caring” event, which is focused on shining a much needed light on the impact this disease has on families across the country.

In addition to providing round-the-clock care, caregivers also have to deal with their everyday family, career, financial and personal obligations. The unfortunate reality is that balancing all of these responsibilities is nearly impossible, and families end up making huge sacrifices. 

The burden of caregiving has forced families to cut back on necessities such as food, employment, transportation, housing and medical care. A report from the Alzheimer’s Association found that, on average, families spend more than $5,000 of their own money to provide resources, while losing more than $15,000 in annual income as a result of reducing their employment to meet the demands of caregiving.

The financial strain expands past the caregiving years, with nearly half of families having had to tap into hard-earned savings and retirement funds to make ends meet. I exhausted my savings myself. While I’m thankful to have been able to provide for my mother, I understand the burden and stress this creates as people look ahead to the future, especially those nearing or at retirement age.

Many caregivers also sacrifice their health while providing support for others. Incidences of high stress levels and increased cases of chronic conditions like heart disease and depression are common among caregivers. In 2016, it was found that Alzheimer's caregivers incurred $10.9 billion in additional health costs due to the physical and emotional impact of caring for someone. 

More and more families will experience these challenges. Projections estimate that by 2050 there will be 13.8 million Americans with Alzheimer’s, with a potential cost to our nation of $1.1 trillion. We must do more to cure this disease, while also shining a light on the needs of caregivers.

This goal will be discussed at Thursday’s “Cost of Caring” event sponsored by The Hill. Representatives from both sides of the aisle will come together to talk about the impact of Alzheimer’s, as well as policies Congress can pass to help people and families impacted by this deadly disease.

One such solution is the Credit for Caring Act of 2017, legislation I co-sponsored that will provide working family caregivers with a tax credit to assist with the burdensome out-of-pocket costs associated with caring for someone with a debilitating disease at home. Whether it’s helping to pay for medication, housing or lost income – every little bit of financial support will help ease the burden felt by families who selflessly ensure their loved one has the care they need each day.

The healthcare system rightfully focuses on patients and their health – but we can’t forget the unforeseen impact this disease has on families. Statistics show that Alzheimer’s will continue to have devastating consequences – and the fact is that sooner or later we will all be impacted by this disease somehow. Congress can’t create a cure to this deadly disease, but we can put in place innovative policies that provide caregivers and families with the tools they need to support their loved one through this difficult journey until we find a cure.

Donovan represents New York’s 11th District.