An estimated 5.7 million Americans of all ages are living with Alzheimer's and the numbers are climbing fast, according to the Alzheimer’s Association.
Those numbers don’t include the millions of others affected by Alzheimer's — the family members and loved ones of those suffering from the heartbreaking disease. Learning what to expect, having a shoulder to lean on and receiving advice from others who have been there, can be a lifeline for those who love someone with Alzheimer’s, so support groups are increasingly important.
“I think support groups are really critical,” said Cari Eyre, associate director of programs for the Alzheimer’s Association, Central & North Florida Chapter. “They are an opportunity for family members to not only get the emotional support that they need, and maybe some validation for the feelings that they’re going through, but also a good place for them to get some practical tips and support and learn the ins and outs of this disease.”
In the Ponte Vedra area, The Palms at Ponte Vedra holds an Alzheimer’s support group meeting the first Wednesday of every month from noon to 1 p.m. that is facilitated by Eyre. The meetings, which have been held at The Palms for a little more than two years, have been invaluable to members of the group, especially those who are new to the program, such as Dr. Stephen Carney, whose wife, Mary Jane, became a full-time resident at The Palms just over two weeks ago.
Carney said he noticed his wife was having some cognitive difficulties, and he thought he could handle the caregiving duties himself. But, he said, with guidance from their children, he eventually had to accept that he couldn’t do it alone.
He found The Palms, which he said made his decision a little easier. The community allowed Carney to bring his wife to the facility on a three-day-a-week basis to get used to the facility. She was able to participate in activities and get to know the staff before she became a live-in resident.
He also said it’s important having the support of people who understand, like group member Ruth Phelan, a Palms at Ponte Vedra resident whose husband died from complications of Alzheimer’s.
“We usually answer questions as thoroughly as we can,” Phelan said of the support group. “We share our experiences and tell them what they can expect.”
Phelan said her husband thought he had Alzheimer’s in the early stages. She watched the disease progress to the point that he didn’t recognize her any more.
“Before we brought him here, he didn’t know me,” Phelan said. “He claimed that I was an imposter, and I was not his wife.”
After moving to the Palms, she didn’t see him for the first month, giving him time to get used to his new environment.
“They wouldn’t adjust to be away from their mate if they were with them all the time,” Phelan said. “So, it has to be that they get adjusted to being alone without them and mixing with the group and eating and sleeping and waking up (in the new environment). So, it does take time for a major adjustment.”
Carney hasn’t seen Mary Jane since she moved into The Palms a little over two weeks ago but said The Palms has been diligent about keeping him informed of her daily activities.
“I’m ready when they call,” Carney said. “It’s just they thought my coming in too soon would set us back to where we were when she first came.
“Overall, I look at it now, with all the activities she’s getting to do,” he added. “She’s so much happier during the day. Everybody’s been so wonderful.”
Support group member Lou Miller said her husband, who currently resides at The Palms, noticed some of the early signs himself. He read a lot of material on Alzheimer’s when he began struggling with a primary early symptom.
“His long term-memory he can remember very visually, and discuss anything that’s happened,” Miller said. “It’s his short-term memory that he struggles with. You can ask him if he had breakfast, and he’ll say, ‘I don’t know.’”
The Alzheimer’s Association has a 10-symptom checklist that breaks down the top 10 earning signs and symptoms.
“It’s important to keep in mind that Alzheimer’s disease creates a very unique picture for everybody who experiences it,” Eyre said. “If you’ve met one person with Alzheimer’s, you just met that one person. Support groups are definitely a way to provide support and insight.”
Coming to the conclusion that help is needed can be a relief for the person living with the disease, and their loved ones.
“After a while, you say to yourself that’s not the way she should have to live, that’s not the way I should have to live,” Carney said. “We can do better.”
Miller said trying to go through it alone can be isolating to the caregiver, who often puts self-care on hold.
“For me, it was very confusing,” she said. “Because I knew he was going to get worse, and I was still healthy, and I felt like I was being pushed into seclusion. All the care becomes his care.”
Carney’s biggest concern was worrying about if something happened to him. The Carneys’ children live up North, so the thought of something happening to him if he was his wife’s sole caregiver prompted him to act.
Eyre applauded Carney’s approach to dealing with his wife’s condition and the importance of seeking help.
“Dr. Carney is such a wonderful example, because he is that completely devoted and caring husband,” Eyre said. “And his medical background may make it seem that he’s the ideal person to be a caregiver, so, obviously, if he knows the importance of turning to other people to support him, then we all need to see it. Because he’s doing everything just right.”
And it’s a decision more and more people may be having to make. Diagnosis of Alzheimer’s cases is growing at an alarming rate. Eyre said more than 5 million Americans are currently living with Alzheimer’s, and the number is expected to triple by 2050.
“So, if you don’t know somebody with Alzheimer’s Disease today, odds are that you will,” she said.
Some of the reasons for the growing numbers are that people are living longer and people are more likely to get an accurate diagnosis of the disease than they were 20 or 30 years ago, Eyre said. There is also significant research being done to try and curb those numbers, including a recent clinical trial exploring the effects of the absence of amyloid from brain and cognitive functioning, and a recent study showing significant reductions in the risk of mild cognitive impairment through aggressive lowering of systolic blood pressure. For more information on these studies and others, visit www.alz.org/aaic/overview.asp. The Alzheimer’s Association also offers educational programs to cover this material.
For caregivers who are unable to attend meetings, the Alzheimer’s Association allows people across the country to connect through a support group via Skype, held on the third Tuesday of every month at 7:30 p.m. For more information on the area Alzheimer’s Association chapter, go to www.alz.org/cnfl.
Eyre said it’s important for people dealing with loved ones who may have the disease to be proactive.
“I would just encourage family members who are concerned about a loved one, don’t go with the wait-and-see or say there’s nothing we can do,” Eyre said. “I know it’s a scary and uncomfortable time but connecting to support groups and getting the information about what we can do to build a successful care plan are some of things we can do to help loved ones with this diagnosis live better and live longer.”
