Alzheimer’s cases rapidly increasing in state
The West Virginia chapter of the Alzheimer’s Association is looking toward 2010 with a renewed sense of hope in its battle against the debilitating disease often referred to as “the long goodbye.”
Memory Walks and other fundraisers have been taking place all around the state throughout October and November, which is National Alzheimer’s Awareness Month.
However, the holiday season often proves to be one of the busiest times for the association.
As families gather for celebrations, more calls come into the association’s 24-hour help line from residents concerned about loved ones’ odd behavior or mood swings that may be associated with Alzheimer’s. Extended visits with loved ones can call attention to these changes that often go unnoticed throughout the year.
“That’s when people may start noticing maybe it’s not a good idea for Mom or Dad to be staying at home by themselves, cooking for themselves or dispensing medication,” said Laurel Kirksey, development director for the West Virginia Alzheimer’s Association.
Across the country, someone is diagnosed with Alzheimer’s every 70 seconds but the rate is even more rapid in West Virginia due to the state’s aging population.
The Alzheimer’s Association estimates 48,000 mountain state residents are currently living with Alzheimer’s, but Kirksey admits the disease is likely underreported. She says physicians are sometimes hesitant to make the diagnosis, which can only truly be confirmed after death when a brain autopsy is performed.
Symptoms of Alzheimer’s and dementia can often be confused with other diseases and disorders like depression. But experts say it’s important not to ignore signals and to seek medical advice as soon as possible.
“Early detection is so important,” Kirksey said. “We see so many families that brush it off and wait until their loved one no longer has the capacity to make their own decisions. It’s a really treacherous process.”
For South Charleston resident Susan Young, the reality of Alzheimer’s hit three years ago when her husband John was diagnosed with the disease at just 55 years old.
Young says small shifts in her husband’s behavior raised the first red flags.
John started having trouble keeping track of his duties at work, often became confused doing daily chores at home, became emotionally detached and would sometimes sit and stare into space for short periods of time.
The Youngs went to medical centers in West Virginia, North Carolina and Ohio before ultimately accepting the diagnosis of early-onset Alzheimer’s.
“It was a shock because it’s definitely not what we had planned for our retirement years one day,” said Young.
For now, John is taking medication that helps slow the progression of his disease and is still cognizant enough to function at home by himself while Susan is at work. But as his symptoms worsen, Susan worries about how to properly care for her husband.
“It’s hard to ask friends for help. We’ve always been so independent and it’s always been so easy for John to do things,” Young said.
Young says she’s considered hiring someone to come into her home to help with John’s needs but isn’t yet sure where to turn when that time comes.
The Alzheimer’s Association reports that 70 percent of Alzheimer’s patients are actually cared for at home. Typically, a relative takes on that responsibility.
“There are really strong feelings that no one else can take care of my Mom or Dad like I can,” Kirksey said.
“But it turns into a 24-hour, seven-day a week job and it’s really difficult, especially on caregivers.”
In fact, research done by the association finds that 60 percent of caregivers will pass away before their loved one suffering from Alzheimer’s due to a stress-related illness.
But Kirksey says options are limited in West Virginia for people who want to hire professional help to come to their homes.
Last year, Dr. Mark Newbrough, head of geriatric physicians for West Virginia University, testified before a state senate committee that the mountain state will soon face a significant shortage of qualified geriatric health care workers.
Kirksey says the association has also started noticing a pattern in calls coming into the state help line.
“More and more people were asking for names of individuals who could come into their home and care for their loved one for maybe eight hours or just a few hours a day while they were at work or just to give them a respite,” said Kirksey.
Currently, there is no database of professionals trained in dementia care and no certification process available. Because dementia and/or Alzheimer’s are difficult to care for, that specific arena of the health care field sees a high turnover rate.
But the Alzheimer’s Association and Charleston’s Garnet Career Center are partnering in an effort to deal with these deficiencies.
Beginning in January, Garnet will offer a brand new dementia care training course with curriculum developed by the Alzheimer’s Association.
Programs dedicated to dementia care are rare across the country and didn’t exist in West Virginia at all until now.
“We’re hugely excited about it. We can’t stop telling people this could potentially be a breakthrough in dementia care and are so proud to be leading this effort,” said Kirksey.
The program will begin in January at Garnet and will consist of a total of 48 hours of training broken down into classes two days a week for eight weeks.
The cost of the course is $280 and enrollment is ongoing now.
Kirksey says the program will be led by instructors provided by the Alzheimer’s Association and will target three groups of individuals.
The first group consists of people who are looking at the possibility of starting their own small business in private in-home care. As part of the class, participants will learn about taxes, professional protocol, and other aspects of starting a private business.
Secondly, the program will allow people already in a health care field to improve their skills relating to dementia care in a long-term setting.
Finally, people wanting to care for loved ones suffering from dementia can take the course to learn techniques to take back to their own homes.
“The more you learn about Alzheimer’s disease and the way it affects the brain, the better you can care for patients,” said Kirksey.
Leaders at Garnet and the Alzheimer’s Association hope to start with a small group of ten to 20 students for the initial class and build up the program from there.
Meanwhile, Susan Young advises anyone struggling with a recent diagnosis of Alzheimer’s to find their own support system before making any difficult decisions about care and treatment.
“We are blessed with the support and love of family and friends,” she said.
Young also encourages people to take advantage of support groups offered by the Alzheimer’s Association and to get involved in initiatives like Memory Walks.
“It’s very important to have that outlet outside of the home.”
Anyone who suspects a loved one may be exhibiting symptoms of Alzheimer’s disease is urged to call the statewide 24-hour hotline at 1-800-491-2717 or to simply stop by a local office.
Resources such as information on the ten most common signs of the disease are available online at www.alz.org.