Alzheimer's Disease Awareness month recognizes caregivers

by Autumn Evans

November is Alzheimer's Disease Awareness month, a time to support the more than 5 million Americans who have it, as well as the many more millions of people who care for those with the disease.

It is also a time, according to some professionals, to educate people in some common misconceptions about Alzheimer's.

"A lot of times, I think when people notice any change, they want to ignore it or think it's just old age, and that's a common myth," said Rachel Rochal, program director of the Western New York chapter of the Alzheimer's Association. "Memory loss is not a normal part of aging, and I think it's often misconstrued."

"I think people don't realize the huge impact that it has and just how many people are currently impacted by the disease," she added. "Not just the people diagnosed but everyone who's trying to care for them."

Rochal estimated that three caregivers were needed to look after one patient with Alzheimer's. She noted she had also heard the month referred to as Caregivers Month, and stressed the importance of recognizing their hardships as well.

"It's not just the physical toll of caring for someone, because this disease has such a big range," Rochal said, adding that some people could have Alzheimer's for as long as 20 years. "You're looking at not just the physical care but the emotional care and seeing the changes in your loved one, and a lot of time that can compromise a caregiver's own health.

"They're so focused on making sure their loved one has their meals and is getting up and trying to live their lives, they kind of let themselves fall to the side. It's just important for them to maintain their own physical health, eat well and find support, and know when they should reach out for help."

The situation is not unfamiliar to Middleport resident Frank Maynard, who lost his father Gerald to Alzheimer's seven years ago. Maynard and his mother and sister took care of his father after the diagnosis.

He described his experience as a caregiver as, "very sad. Growing up with him the way he was, he was a great dad and everything.

"And then to see him progressively getting worse through the disease and not even knowing who I am ... when I would talk to him he would kind of have a puzzled look on his face, like 'I know you, but I don't know you' type of thing, and it was very, very sad as it got worse."

Maynard said his family never utilized any support groups, but that his mother and sister used the Alzheimer's Association website and phone line to find more information about the disease.

"We just read and tried to keep our positive thoughts together and hoping something would change," he said.

Rochal said the Alzheimer's Association offers numerous services for people with Alzheimer's and for their families and caregivers. Those services include free education classes about the 10 signs of Alzheimer's and the basics of memory loss and dementia, tips on communication, training for professional caregivers, support groups and advocacy to create awareness and to find a cure.

The group also has a 24/7 hotline, 1-800-272-3900, for anyone with questions or looking for tips. The phones are always answered by a live operator. Online help can be found at http://www.alz.org/care/overview.asp.

"Although they might feel like there are others who don't understand, maybe their friends and family don't get it yet, we're here to support them," Rochal said. "Any time they need anything at all, we're here ... this isn't a disease you can do alone."

Maynard offered his own advice to those who have a loved one with Alzheimer's.

"Once the diagnosis is positive, that's what it is," he said. "Enjoy your loved one each and every day, and just spend as much time as you can with them, because it does go away from you fast."

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Alzheimer's Association seeks volunteers for respite program

The Alzheimer's Association Western New York Chapter is seeking volunteers for the chapter's in-home respite program. Adults are needed to provide companionship and simple recreational activities for individuals with Alzheimer's disease or other dementia a few times per month.

The chapter's director of respite services will train and work closely with volunteers to ensure a good match for both the volunteer and the client, and will accompany volunteers on their first visit to a client's home.

The next scheduled volunteer training workshop is from 1 to 4 p.m. Wednesday, Nov. 19, in the chapter offices at 2805 Wehrle Drive, Suite 6, Williamsville.

Additional information about the local respite program, for both volunteers and participants, is available during regular business hours at 1-800-272-3900.

The Western New York chapter provides resources in eight counties: Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Niagara, Orleans and Wyoming. Information about the chapter and those resources can be found at www.alz.org/WNY.