Why Ed Markey’s Commitment to Ending Alzheimer’s Disease Matters
This is my dad. He’s 64 years old. He loves classical music, beer, and the Patriots. He’s also been living with Alzheimer’s disease for the last ten years, and likely has less than a year left to live.
Alzheimer’s disease is a type of dementia that currently affects 5 million people in the United States, and that number is only increasing; by 2050, it’s estimated that more than 14 million people will be diagnosed. The progression of the disease is devastating, and causes gradual loss of memory and cognitive decline.
It’s not often talked about in popular culture or the media, but Alzheimer’s disease is a serious issue and a public health crisis, and we need to fight it head on, with financial resources on the national level and a coordinated plan. And we need Medicare for All, a healthcare system that values people over capitalism, to ensure that Alzheimer’s patients (and all people) are treated with the respect and dignity they deserve. US Senator Ed Markey understands this, and has put both issues at the center of his campaign. He’s also spent his entire career advocating for people with Alzheimer’s: he created the Congressional Task Force on Alzheimer’s, co-authored the successful National Alzheimer’s Project Act, and has been one of the strongest Congressional advocates for increasing Alzheimer’s research and funding for decades. His work is motivated by personal experience, too; his mother passed away from the disease in 1999.
But for a disease that is so widespread and has such debilitating effects, Alzheimer’s and other forms of dementia are hardly talked about. It’s something I rarely talk about, even with the people closest to me, and even when it’s such a huge part of my family’s life.
I was nine years old when I found out my father had early onset Alzheimer’s, which is what it’s called when Alzheimer’s affects people under 65; he was only 55 at the time. I had known for a while that there was something unusual going on, but wasn’t quite sure what it was. He had trouble remembering things, like where he put the keys, then started having problems with coordination and balance. His ability to go grocery shopping and drive a car declined, and he had more and more trouble with simple everyday activities like tying his shoes, brushing his teeth, or helping me with my homework. Within the next year, he went on long-term disability at work, and we started to have tough conversations about what the future would look like for our family.
It’s been over ten years since his diagnosis now, and I know that my family has been extremely privileged to have had the resources to deal with my father’s disease so well. There have been ups and downs, and nothing will stop the dementia’s progression, but we have financial stability, a good healthcare plan under MassHealth, and the ability to care for my father at home instead of in a nursing home. Although he’s now in the final stages of the disease, we’re able to keep his quality of life as high as possible.
But many families don’t have the same resources, and are forced to make impossible decisions about the health care and lives of people they love. Nursing homes are extraordinarily expensive without a long term care policy, and once somebody is diagnosed with Alzheimer’s, they’re no longer allowed to apply for long term care insurance at all. And not every family can afford to have somebody quit their job to act as a full time caretaker, although 16 million Americans, including my mother, are currently doing this without compensation. Medicare for All would mean high quality care without restriction for every Alzheimer’s patient, but our current healthcare system is more focused on profit than taking care of people.
Alzheimer’s also doesn’t affect all Americans equally. Racial disparities stemming from on socio-economic discrimination and institutionalized racism exist for Alzheimer’s as they do for many other conditions, most recently apparent in the COVID-19 crisis. According to the Department of HHS, “Reported Alzheimer’s disease prevalence rates range from 14% to 500% higher among African Americans than among Whites.” It’s impossible to think about diseases like Alzheimer’s without also considering the people it affects, and how as with almost all issues, marginalized communities are hurt the most; nothing exists in a vacuum.
It’s hard to describe what it’s like to live with a close family member who has severe dementia, especially since every case is different, and even for one person, each day brings new challenges. In the beginning, it was my father forgetting a few things at the grocery store, and deciding to walk to the bar down the street when he was no longer able to drive. Then, after he fell down the stairs due to loss of balance and sustained a spinal cord injury, there were a few months of visiting nursing homes and helping him learn to walk again. Now, it’s learning how to get around with a wheelchair, and figuring out when he’s hungry and when he needs to use the bathroom now that he’s mostly stopped talking. A lot of each day is just telling jokes and hoping he’ll smile, playing his favorite music, and spending as much time together as a family as we can.
But the hardest thing is watching a person I love slowly disappear and lose himself to the disease. It makes my heart hurt to think about what he’s going through, and to know that millions of others are going through the same thing.
Alzheimer’s disease needs to be taken seriously, but those who suffer from the disease are often unable to advocate for themselves, and the low-income families struggling to get by while taking care of a family member with Alzheimer’s are the least heard of all. That’s why it’s so important to have leaders like Ed Markey, who has led the fight against Alzheimer’s for years, passing bill after bill and doing everything he can to help families like his. He’s worked tirelessly for people like my father, but he’s not finished yet; he’s running for re-election to the Senate this year, and I’m so proud to support him.
If you care about Alzheimer’s disease, the people and families it affects, and the institutionalized discrimination present throughout the healthcare system, there’s no better champion in Massachusetts than Ed Markey; and if you want Medicare for All and an Alzheimer’s cure by 2025, Ed Markey is the candidate who will make it happen. To join our campaign today, and to join me in fighting for Alzheimer’s patients everywhere, sign up at support.edmarkey.com/amanda-westlake, and vote for Markey on September 1st.
