[Editor's Note: This article has been updated to reflect corrections. John Channell's support group is not officially sponsored by the Alzheimer's Association and he has not received training from the AA to be a support group leader. Younger onset is correctly defined as under 65 and accounts for 5 percent of people with Alzheimer's, and lastly, while there are no treatments currently to prevent or cure Alzheimer's, there are a number of drugs used to effectively treat its symptoms.]
When Peabody resident John Channell, 58, searched online for younger onset Alzheimer's support groups on the North Shore, he couldn't find any.
In fact, the Alzheimer's Association, which is locally based out of Watertown, only has three groups in the Boston area that specifically focus on the younger onset diagnosis of the disease. There are numerous groups around the area for the more common type of Alzheimer's and they are generally attended by caregivers.
Alzheimer's is a progressive brain disease, where eventually patients are unable to walk, talk, or recall long-term memories. Younger onset is a definition given to those under 65 and accounts for about 5 percent of individuals afflicted with Alzheimer's.
Of the three groups, two are in Watertown, which is about 25 miles away, with more than 15 couples from across the state, including the North Shore and Central Massachusetts, but for Channell, the commute is too far from Peabody, especially with traffic.
The third group is in North Andover, and is for early stage diagnoses of the disease, which is also attended by younger onset patients, but that's still about 17 miles away from Peabody.
So Channell, a financial analyst for North Shore Medical Center who was diagnosed with younger onset Alzheimer's a year ago, decided to start his own group. Support groups that are currently sponsored by the Alzheimer's Association are run by caregivers.
Thoughts on a support group
"I want to start a support group, because there isn't a group on the North Shore for my age group," Channell said. "If no other Alzheimer's groups will do it, then I will. There are a lot of emotions bottled up inside that no one else can help you with, but someone who is going through it. They understand more easily, and they must have a need to talk, too."
The plan is for the group to try and meet weekly, but the schedule will be as flexible as it needs to be, whether morning, noon or night.
Channell's wife, Pauline, will also help out by providing such things as coffee and refreshments, since the group is aimed directly at patients and not caregivers. However, caregivers won't be turned away, they said, especially if the group members rely on those people to drive them around.
"I think the group is a great idea," Pauline Channell said. "They have the freedom to help each other with what they're going through. The emotional support is very positive for them. John isn't going to share everything with me, because he doesn't want to burden me. But, he will tell them."
Channell added it will be a free chance for people with the disease to be social and have a few laughs.
The Channells live in an apartment complex on Overlook Trail, where there is a function room that could be a potential meeting spot.
A neurologist may also be brought in for legal matters and health-related questions.
It runs in the family
Channell's late father Les also had younger onset Alzheimer's, and Channell's son Andrew, 33, has a higher risk since it runs in the family on the male side. Channell noted he is hopeful for a cure, but not confident one will be found during his lifetime.
Channell's middle sister, Jeanne Tagliamonte, 60, of North Reading, heard there is an electromagnetic item that can be inserted into the brain to regain memory, but she is not sure of its availability and cost, adding the news perked her ears. However, this development is not included in the news the Alzheimer’s Association sends out.
There is also a helmet for patients to wear that is being worked on along with developing medicine, but Nicole McGurin, Operations Director of Clinical Services at the Alzheimer's Association, said neither have been approved by the Federal Drug Administration nor are they available for use.
While there are no treatments currently to prevent or cure Alzheimer's, there are a number of drugs used to effectively treat its symptoms, according to the Alzheimer's Association. Namenda and Aricept are the most commonly prescribed medications for Alzheimer’s symptoms and have a high rate of efficacy during the early stages of the disease process, the AA says.
On a more hopeful note, the National Alzheimer's Project Act, which President Barack Obama signed into law in January that brings direct attention to the issue and aims to find a disease-modifying treatment that will delay symptoms, at the least, or possibly find a cure someday.
McGurin explained that any new experimental treatments have to undergo many phases of clinical trials, which is they they may take so long to get on the market.
Tagliamonte added their father, Les, maintained an awareness of Channell and herself, but lost memory of other relationships towards the end. To compensate for her brother's memory loss, she will make a memory book full of pictures and life moments that Channell can eventually use.
There is a sense of immediacy for Channell as well as a potential generational impact.
He called the family history a 'blessing and a curse' since he knows his family will provide for him but, simultaneously, he knows he will eventually lose all long-term memory.
Tagliamonte also experienced Alzheimer's firsthand since she was the assistant caretaker.
"John is still filled with life, hope of a future, and peace," she said. "Alzheimer's robs of you all that. While he is still young, he has a desire to try to talk to people (not only for himself) about how he is feeling, how he is responding to things. He wants to give emotional support while he still can."
"Because we share frustration and experience with our dad, he can answer questions and give advice. I don’t know how much time left there this until this disease robs his peace of mind, thoughts and conversations," she said.
The Walk to End Alzheimer’s
Channell participated in the The Walk To End Alzheimer's for the Massachusetts/New Hampshire chapter in Andover during October 2011 and raised almost $8,000 with "Team Grampo" for the Alzheimer's Association. It was the second largest amount raised among the teams walking that day.
"Everyone was so supportive financially," Pauline Channell said. "John has a personality where people are drawn to him. Strangers came by at Artie's and donated money."
Channell set up a fundraising table at Artie's Lynnfield Street Diner, his favorite hangout spot, last fall.
“He put 1,000 percent dedication into the walk. He was able to approach people without pressure and people responded to him,” Tagliamonte added.
In the handful of months since the walk, Channell is still very functional, but has increased anxiety attacks.
"I'm more nervous about going places, but I'm still driving." he said. "It takes me longer to make decisions. They changed my meds a couple times. To compensate for getting emotional and breaking into tears, I have to call someone to get out of it. It's a slow progression, but the day that I stop driving will be the day I lose my freedom. If I follow my father and uncle, I won't be driving in four years, by 62."
Pauline Channell noted John was diagnosed a year ago, but has really had the disease for three to four years. Either way, it is in the early stages, and Channell compensates extremely well, often playing mind games on his iPad to keep his brain active.
"There is a desperate need for a North Shore support group. I hope someone will come along and help him with that opportunity. I love him, and I'm behind him 1,000 percent. I want to see that light in his eyes again," Tagliamonte said.
"I hope this interaction helps John," McGurin said. "If there are enough people in his area, I'm sure he'll benefit from that socialization. There certainly is a big need. A lot of people don't want to talk about it, because they are in denial, but it would definitely help them. Support groups are not for everyone. Not everyone is that kind of person. We wish him luck and are open to helping him."
McGurin added that younger onset is biologically the same disease as traditional Alzheimer's, but because patients are usually still working and have younger children, it makes it tougher to deal with initially.
The Alzheimer's Association does run specialized courses for younger onset victims and has a social networking link on its website.