Statement

Statement of Jason Hatke to UN General Assembly hearing on NCDs

New York, 19 June 2014

Statement of Jason Hatke (Indianapolis, Indiana, USA) on the occasion of the Informal Hearing to provide input to the high-level meeting of the UN General Assembly on the comprehensive review and assessment of the progress achieved in the prevention and control of NCDs - June 19, 2014 New York

Good afternoon, my name is Jason Hatke. I wish to thank the President of the General Assembly for inviting me to speak today. I am 18 years old, and I am a caregiver for my father, Michael, who was diagnosed with younger onset Alzheimer’s disease at age 46.

When I was 13 years old, I watched a documentary about Alzheimer’s disease in school. The film featured a woman who was already in the late stages of the disease and completely bedridden. She was only around 65 years old. Her son, who was a little older than I was at the time, was taking care of her full-time. He had to completely care for her, just as a mother would care for her newborn child. While watching it, I thought to myself, “I cannot even imagine having that kind of responsibility.”     

As the documentary continued, some of the little things it mentioned reminded me of how my dad was acting around the house. It was strange to see these behaviors, called “symptoms”, in him. There were times that I would have to help him finish his sentences and find the right words, and help him to remember the names of people he met only 5 minutes ago. The video presented things in a different way, and I knew something was not right with my father.

That night I mentioned to my mother that I thought Dad had Alzheimer’s. But she disregarded it, saying, “Oh, he has always had some memory problems.” This went on until Dad started having trouble with simple tasks at his job, and it continued to get worse.

As I said, I was 13 years old at the time, and because of my age, my parents tried to keep me in the dark about Dad’s “mystery illness”. It was extremely tough watching my dad visit doctors more often than usual and not understand the reasons. It took two years of doctor’s visits and evaluations to finally get a diagnosis of younger on-set Alzheimer’s disease at the age of 46. That was 5 years ago, and we are grateful that he is still mentally aware.

My parents contacted the Alzheimer’s Association’s Greater Indiana chapter, who recommended that they should start attending monthly support group meetings. I went with them, but I was the only person my age. My friends somewhat knew what Alzheimer’s disease was, but they did not understand what I experienced on a daily basis. I had to relate more with adults, and I found that talking with the care counselors at the Alzheimer’s Association really did help. Through this process I became more and more outspoken.

I used to take my parents for granted, and I was an only child - spoiled a little bit. But I realize now that everybody’s time is limited. Soon, I may not have a father who knows who I am. When the day comes, will he understand that I am getting married? Will he know who I am in 5 years? What about 10 years? Will he remember his first grandchild?

I’m doing my best to educate my peers about Alzheimer’s disease, risk factors and brain health, because they will possibly have to face some form of this disease someday as caregivers or persons with dementia themselves. I love my dad, and I’m grateful for my mom’s support in caring for him, but I don’t want to see other teenagers have to deal with this horrible disease.

There are an estimated 44 million people living with dementia in the world right now. This is due to in part to population aging and also by people with modifiable risk factors shared with the “big 4” NCD’s. It is estimated that there will be as many as 76 million people suffering from dementia by 2030, mainly in countries that cannot afford to deal with the NCD crisis.

The 2011 Political Declaration clearly says mental and neurological disorders, including Alzheimer’s, are part of the NCDs that threaten global health and development today. But, growing scientific knowledge concerning risk factors is little used. Action plans on NCDs often leave off dementia. It’s unfinished business and a missed opportunity. On a personal level I know that my dad’s thinking problems make him a more difficult patient because he has trouble managing his own care; Now, imagine tens of millions with similar problems and other chronic diseases, and the cumulative burden on health systems and countries. Just because my dad has Alzheimer’s does not mean his is immune from other health issues.

The good news is that we know what to do for NCDs. Now, we need countries to step up and start taking action. Every person in the world should have access to prevention, treatment and care for all NCDs, including mental and neurological disorders, no matter what their age, gender, or where they live. Unhealthy products like tobacco and processed foods should not be easily available or cheap.

Families like mine and others in civil society are primary responders to dementia. I can’t imagine doing this on my own, without my mom’s support in caring for him. We need to join together with others suffering from or caring for people with NCDs to take action.

In that spirit, Alzheimer’s Disease International is now a member of the NCD Alliance and a full partner in the work to focus global attention and commitments on NCDs. I think an effective response to Alzheimer’s and other NCDs is collaborative, one that brings people together. We need to focus our attention on how to bring people together on NCD’s. Thank you.

Notes

Jason Hatke - Biography

Mr. Jason Hatke is 18 years old, and the youngest ambassador for the American Alzheimer's Association. He started volunteering with the association at the age of 13, the same year his father was diagnosed with Alzheimer's disease. He has been very active in the United States as a lobbyist for the association, and he has attended the National Public Policy Forum in Washington, D.C. for the past 4 years. Last summer, Jason and his father traveled to London to work with Alzheimer's Disease International (ADI) to build a young caregiver support website which is still under construction.

Jason will leave for basic training for the U.S. Navy in July 2014. After the Navy, he plans to have a career that will work to rid the world of the horrible disease and other diseases like it that have stolen his father’s future.

About Alzheimer’s Disease International

ADI is the international federation of 84 Alzheimer associations throughout the world. Each of our members is a non-profit Alzheimer association supporting people with dementia and their families.  ADI was founded in 1984 and registered as a non-profit organisation in the USA. Based in London, ADI has been in official relations with the WHO since 1996 and has had consultative status with the UN since 2012. 

ADI's vision is an improved quality of life for people with dementia and their families throughout the world. ADI believes that the key to winning the fight against dementia lies in a unique combination of global solutions and local knowledge. As such, it works locally, by empowering Alzheimer associations to promote and offer care and support for people with dementia and their family carers, while working globally to focus attention on dementia and campaign for policy change from governments.

For more information, visit www.alz.co.uk