In the next few decades, the number of persons over the age of 65 with Alzheimer’s disease is set to nearly triple from an estimated 5.2 people today to 13.8 million in 2050. It is an expensive disease–total payments for health and long-term care for all individuals with Alzheimer’s disease and other dementias in 2016 are estimated to be $236 billion, of which $46 billion will be out of pocket. These numbers will continue to challenge our country’s resources, health and long-term care systems, and families for years to come. However, as researchers search for a cure, we must also meet the challenge of living well with Alzheimer’s—and we must start by listening to the voices of those living with Alzheimer’s and other dementias.
As September is World Alzheimer’s month, we took some time to speak with Myriam Marquez. Myriam is an advocate who lives with dementia, and currently serves on the Advisory Council for the National Alzheimer’s Project Act. Myriam was quoted in a paper for the Dementia Action Alliance, saying, “Those of us living with dementia are alive. We can feel, we can laugh, we can cry no matter what stage we are in. There are so many things we can continue to do during the course of the condition.” As Myriam notes, people can live well with Alzheimer’s, and it is important to engage persons living with dementia in developing the care support systems that will make this possible.
Q: Can you tell us about the beginning of your journey with Alzheimer’s?
I was 62 at the time. When I came to a 4-way stop near my home, all of a sudden I didn’t know where I was. I panicked, and called my daughter. I was just a few blocks from where I lived! At that moment I knew I had Alzheimer’s. You see, my father was one of 13 children. He and six of his siblings died with Alzheimer’s. Several of my older cousins have died with Alzheimer’s.
So I went to my doctor to get a diagnosis. They did every test under the sun, and said “Nothing’s wrong with you.” But I continued to get lost. The only option I had left was DNA testing. At that time, companies owned genes, so I had to pay over $10,000 to learn that the Presenilin 1 gene runs in my family. In today’s world, genetic testing is more affordable because of a Supreme Court decision that companies cannot patent genes.
In 2010, I heard about a walk to end Alzheimer’s. While attending the walk, I met the president of the Washington State Alzheimer’s Association. It was the beginning of my journey to help find a cure. I became an advocate for a cure, and will continue to be one until I can no longer.
I am a warrior because of my family and because of the ramifications to our country and the economy if a cure or something to stop the progression doesn’t come about. One of my children is 47 years old and has begun to show symptoms. My brave youngest child wanted to know if she carried the gene. Thankfully, she does not.
I am currently involved in two studies. One is the DIAN TU study, which purports to remove plaque from the brain, and another is annual PET scan of my brain. I continue to remain in the early stages of the disease and believe the DIAN TU may be a major factor in my staying in the early stage. I can still drive, pay my bills and balance a checkbook (though keeping my checkbook balanced is tricky).
Q: How else are you a warrior?
M: I love meeting people, talking to them for 5 or 10 minutes, and then telling them, “oh, by the way, I have Alzheimer’s.” Most are interested in hearing what I have to say, though I remember speaking with one man; when I brought up that I had Alzheimer’s, he turned ashen, stumbled over his words and walked away.
In my career, I worked for the Maryland State Legislature as a legislative analyst; for Montgomery County Council (Maryland) as Legislative Council; for AARP as Director of Programs and Advocacy; as an adjunct law professor at Georgetown University Law School, and as a Public Defender for Skagit County, WA. I also had a private practice.
At a conference in D.C. I first met Jackie Pinkowitz and Karen Love and learned of the work of the Dementia Action Alliance and was invited to join their board. They are inclusive in working with people with Alzheimer’s and other dementias. It feels very gratifying to be involved in their work.
Q: Can you talk about your experience on the National Alzheimer’s Project Act Advisory Council? Are they listening to you?
M: Oh, yes. I usually provide lots of comments during the meeting and feel I am heard. At my first meeting, I began to ask questions and give my opinions. I understand that the prior NAPA member with Alzheimer’s had not contributed to the conversations.
Q: Do you think much about brain health?
M: Absolutely. There are four things that are key to brain health: engaging in strenuous exercise, remaining socially active, eating a Mediterranean diet, taking medications as directed…and be happy. I’m a social butterfly.
Q: How should society respond to the growing number of people with Alzheimer’s?
M: As Boomers age, the numbers of persons whom will develop Alzheimer’s and other dementias will increase dramatically. I’m very concerned that if a cure is not found, our economy and that of the world will be drastically affected.
It is also very important that we fight against the stigma of Alzheimer’s and other dementias. My hope is that those who are experiencing dementia and their partners, and others who are aware and concerned about the future, urge others to become active in fighting for a cure. Those of us who have Alzheimer’s and other dementias must be included.
Q: What are the ideal living arrangements for people with dementia?
M: I have been living in a senior living apartment for 2 years. I live alone, but have many friends and acquaintances. It is a community that watches over each other. I’m always monitoring myself and I have no qualms in asking for help. When the time comes that I can no longer take care of myself, I will move into assisted living. Whether a cure is found or not in time for me, I’ve accepted that I’ll go through that process gently and with humor. I believe that everything happens for a reason and am keeping a positive attitude through this journey.
To watch videos of meetings and learn more about NAPA, please go here.
Myriam Marquez was diagnosed with young-onset Alzheimer’s in 2009 and has been a fierce advocate ever since. Prior to her diagnosis, she served as a public defender in Washington State. Her legal background in county, state and federal public policy and her personal experience living with dementia has made her a deeply-committed advocate for advancing dementia research, care and services.
Anne Montgomery is Deputy Director at Altarum Institute’s Center for Elder Care and Advanced Illness where she oversees a portfolio of work primarily aimed at helping to establish policy frameworks for delivery of services spanning medical and long-term services and supports. From 2007 to 2013, Ms. Montgomery served as senior policy advisor for the U.S. Senate Special Committee on Aging, where she developed hearings and wrote policy enacted as part of the Affordable Care Act.
Elizabeth Blair is the Research and Management Associate for the Center for Elder Care and Advanced Illness at Altarum Institute. She has worked in health and aging policy for several years, having received a Master in Public Policy degree from the Heller School at Brandeis University in 2013. She collaborates with the rest of her team to inform policy at various levels by maintaining a robust knowledge of research and developments in the fields of health and aging.
(c) Disruptive Women in Health Care – Read entire story here.