Q&A: Families combating Alzheimer's disease are not alone. What you need to know
Jack Hanna’s family shared their struggle with Alzheimer’s to give inspiration to others fighting the disease. They understand many have it worse, and that thousands around the nation work every day to help families combat the disease. One of those is Vince McGrail, CEO and executive director of the Central Ohio Chapter of the Alzheimer’s Association. The Dispatch recently spoke with McGrail about the latest in treatment for Alzheimer's, advice for families on how to cope and what the public can do to help. The following questions and McGrail's responses have been edited for clarity and length.
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How is the fight against Alzheimer's going?
Well, I would first say that I appreciate the Hanna family working with you on that profile because when there is someone that’s known and loved in the public it does raise awareness. It can be a long journey. Our association is here the way we've always been here, with staff who can work with families to help them understand the disease. And put a plan in place for caregivers that can help lift them up and connect with others in the same situation. But in terms of looking forward to the future for all those families that want us to end the disease, we have made dramatic steps.
How so?
There has never been a treatment available for this disease, and that's made it a very challenging situation for people to get a diagnosis because of the fear that there is nothing available. But in the last year and a half, that has changed. ... It’s not for everyone, but for those people diagnosed in the early stages of the disease there are two FDA-approved treatments (Biogen's Aduhelm and Eisai's Leqembi) that can help slow down the progression of disease. So in terms of looking into the future, it's a step ... It's not a cure. It's not for everyone. ... It can't fix what's been done with amyloid plaque in the brain. But it can reduce amyloid plaque and it can help slow down the progression of the cognitive decline, which is a big step forward for us.
How accessible are those two medications to the public and how affordable will they be?
Well, they are not accessible right now. So we have turned our attention with our public policy work across the country to focus on approval by the Centers for Medicare & Medicaid Services. When a drug is approved it is automatically covered by CMS. But this is a different class of drugs, and CMS has made a decision to not cover the drugs unless they are in clinical trial. We think that is wrong and has to stop. The cost of the drug is prohibitive. The cost of the (one of the drugs — Aduhelm) at home is $26,500 a year, which is very similar to other infusion drugs for other diseases that CMS would cover. So we are pushing back very hard on CMS and the administration to change that policy. It is not fair for those with this disease to not have access to a treatment that could slow down their progression. And every day we estimate there are 2,000 people in the early stages of disease across the country who move beyond the stage where they can be helped by these treatments.
Just to be clear, these medications attack or slow the disease itself, not just deal with the symptoms of the disease?
Exactly. The drugs that have been available for the disease historically have helped with symptoms and behavioral issues
What is the biggest misconception the public has about Alzheimer's disease?
I believe that there are still many people who see Alzheimer's disease as a part of aging. It’s not. It’s a disease that attacks the brain. It's a disease that affects the quality of life in the individual, and with Alzheimer's disease and eventually over the course of time, the person dies from it. The disease is the sixth largest killer in the United States for diseases. And when someone's diagnosed, it could be a 20-year journey. The average span is about eight years from diagnosis to death. And there are many people in their 40s and 50s who are diagnosed with the disease. It’s not just a disease of the elderly.
What advice would you give people who suspect a loved one might be suffering from dementia or Alzheimer's?
First and foremost, we need people to be comfortable talking about cognitive issues with their primary care physician or their health care provider. Typically, patients come in and they don't ask questions. They don't bring up the issue. They expect the physician to bring up these issues or do an annual test. So if you have a loved one you are concerned about, go to the appointment with them and get the conversation started so that testing can be done, and we can figure out if you have the disease in the early stage. ... It’s critical for early diagnosis.
But what if somebody is in denial that they have symptoms, they are refusing to see a doctor, or they won’t cooperate with their loved ones?
I can say it's difficult to know what to do in those situations, and it's common to feel uncertain or nervous discussing the concerns that you have. But I'd encourage family or friends to have a conversation with the person experiencing the memory concerns. We work with the family to come up with a plan for having that conversation. You know, there is some coaching that the association can do. It’s important that people know that we have a helpline. That's 24/7 every day. It’s 1-800-272-3900, and on the other end there is going to be a trained social worker who can work with that person on whatever the situation is.
What advice would you give primary care takers or the loved ones who are responsible for caring for someone with Alzheimer’s around the clock? How do you make them less resistant to getting more help?
Caring for someone with dementia can be overwhelming. And it’s common for caregivers to feel loss and grief, and accepting help can be really challenging. But I would remind the family that they are doing the best they can. But due to the disease and the uncertainty of its progression, families often need more support than can be provided by one person. And that's not any fault of that caregiver. They need help from others in the family. They need resources in the community. Again, I would say the association is here wherever you are and can connect people to those resources in the community. We also have support groups for caregivers that give them a connection to others and can help lift them up. It’s an incredibly overwhelming experience for families to have to provide that parent with daily support. They need to reach out and accept help even if they feel like that’s a very difficult thing to do.
What are some ways throughout the year that folks can help combat Alzheimer's?
June 21st is the summer solstice, and we have a fundraising program called The Longest Day. And people create their own fundraising event to raise money and awareness for the cause. So on that particular day, we have about 35 different events going on around town in the central Ohio area that are fundraisers. But throughout the year, our Columbus walk is by far the largest fundraising event. It’s Sunday, Sept. 24th and starts about noon, and we will walk around 2 p.m. through the streets of Downtown (Columbus) along the riverfront. We hope to have about 4,000 people show up that day to walk with us. Besides it being the largest fundraiser, it's really what we call our largest support group. It's thousands of people coming together to show people you're not alone.
When folks call your hotline, what message of hope can you generally offer families who are continuing to battle this disease?
I think that just having someone on the other end of the line to talk to or offer support is so important. And be reminded that you're not alone. To help lift them up. Often times people don’t want to accept help, or they get to the point where they just can’t do it anymore. They need to have conversations with people who care about them and their loved ones. It’s just important for people to know we are here.
mwagner@dispatch.com
@MikeWagner48
This article originally appeared on The Columbus Dispatch: Families combating Alzheimer's disease are not alone. What to know
