What a privilege I had last week when I spoke to a group taking input for the National Alzheimer's Project Act that President Obama signed into action in January. Representatives from the Texas House of Representatives and US Health and Human Services among others were in attendance to take feedback from the public. When a meeting like this is open to the public, input comes from so many different folks - some were prepared to speak and some spoke only from their emotions. Each person who spoke had their own experience with this disease, and most were very personal experiences of caring for a loved one. I speak to groups often...teachers and parents mostly, and I can usually speak without notes. But when the topic is as important as this, I want to be wholly prepared. I wrote out what I wanted to say and revised it several times.
Even in this large group of about 150 people, I heard only one other person speak about a loved one diagnosed so young, and her mom's AD was due to a prior brain trauma injury. Her mom's diagnosis was in her 30s, and her mom passed away at age 43. One woman was diagnosed at 59, and she was articulate about her frustrations with getting a diagnosis. During my input, I stressed the delay in diagnosis for Billy. He was treated for Adult ADD at first, and the meds made him fidget more than ever with no improvement in memory or completion of tasks. Then he was diagnosed with depression, and although he did have some signs of depression, the root of the depression was not discovered until his symptoms worsened. I know there are much larger numbers of Young Onset AD, but I don't run into too many of them.
In the hour and a half that we were there, we heard at least 20 people speak, and thankfully, we were not held to the time limit of one minute that was first set. Most of us spoke for 4-6 minutes, and it was enough time to truly give feedback. The panel was looking for input that fit into four areas:
3) Health Care
4) Long Term Care
Awareness has been a goal of mine since coming to grips with the fact that Billy has this disease. At first, I didn't want many people to know...somehow AD has or had a stigma in society. Jokes are made about it all the time, and I understand why. I worried about Billy losing his job, and that's what happened. Billy wouldn't tell people unless he just had to, and he never volunteered to talk to anyone about it. Mostly, though, I felt totally unprepared and had no idea what to do for him. People tell me frequently that they had no idea what all was involved with Alzheimer's Disease until they read my blog. I'm thrilled to hear that more people are becoming aware of the gravity of the diagnosis.
Research is taking place, but lack of funding slows it down. Diseases that have money put into the research get treated , cured, and prevented. Early diagnosis is incredibly important in all major diseases, and the same is true for AD. So many doctors are not willing to diagnose someone who is young like Billy, and they have not had experiences with Young Onset, so men get diagnosed with depression or ADD, and women are told that menopause is causing the issues. Mis-diagnosis delays treatment that can slow down the disease. By the time we got firm confirmation that Billy had AD, the disease was too far along for any of the clinical trials in this area.
I am so thankful that Billy has had health care and insurance during his onset and diagnosis. While it would be so helpful if he had Medicare, at least he has health insurance. Many Early Onset patients are able to get Social Security Disability, but they don't get on Medicare for two years. How do they get meds? No meds = no slowing of the disease.
My opinion of long term care is still forming, and a huge gap exists in the time between when a person loses his or her job and the time that person needs long term care. Years pass by without knowing what to do. It became evident to me that I had to find a place for Billy because my staying home with him every day was not possible. I think of older onset patients who are typically retired with their spouses, and even though the spouse may have the time to spend all day every day with the AD patient, it is not healthy for the caretaking spouse to spend 24 hours a day/7 days a week with that person. The caretaker has to have a break. Research has many stats about caretakers dying before the AD patient.
As you hear more about the National Alzheimer's Project Act (NAPA), I hope you will support it's initiatives and know that many are being helped. So many are touched by this disease in one way or another.