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Dept. Of Aging Trying to Target Missing Resources For Alzheimer’s Caregivers With Community Forums

Matt Rourke
Alzheimer's patient Dorothy Eckert and her husband John Eckert hold hands at their home in Norristown, Pa. The state's Department of Aging is hosting community forums to help caregivers find resources.

Linda Deafenbaugh’s husband was diagnosed with Alzheimer’s at age 48. The couple lives in Ohioville, Beaver County and Deafenbaugh has been her husband’s primary care giver for the last seven years.

Now 55, he can’t be left alone and Deafenbaugh said she often feels overwhelmed. That’s why she attended one of the seven Alzheimer’s disease forums held by Pennsylvania Secretary of Aging Teresa Osborne.

“To find out what’s available, as far as resources, and also to put word out there that in the rural areas, there is nothing,” Deafenbaugh said.

For the last five years, she said she’s been trying to find help, to no avail. Monday’s forum at the Allegheny County Area Agency on Aging on the South Side brought together professional care and service providers, as well as family caregivers like Deafenbaugh. 

“It’s estimated that nearly 400,000 of our brothers and sisters right here in Pennsylvania are affected by Alzheimer’s disease or another related disorder,” Osborne said.

She said one in 12 Pennsylvanians is directly impacted by the disease.

“Alzheimer’s is a fatal and cruel disease, killing more than breast and prostate cancer combined and it cannot prevented, cured or even slowed,” said Osborne.

In 2013, the most recently available data, the Centers for Disease Control and Prevention reported more than 67,000 Americans died of breast and prostate cancers combined. That same year, more than 84,000 people died from Alzheimer’s disease, which is ranked as the sixth leading cause of death in the U.S. And between 2000 and 2014, deaths from the disease increased 89 percent, according to the National Center for Health Statistics. Though Alzheimer’s is categorized as a cause of death, those suffering from the disease often die from secondary infections like pneumonia or a bladder infection.  

And as Deafenbaugh’s husband shows, it’s not limited to the elderly. In fact, Osborne said early onset Alzheimer’s is becoming a problem.

“That is a crisis that we as a state need to prepared for and therefore set on our rules and regulations, not just at the state level but also at the federal level,” Osborne said.

Pennsylvania’s Plan on Aging piggybacks a national effort to end Alzheimer’s by 2025, but Osborne said a lot of work and research still needs to be done. That’s why she’s hosting the forums. She said the goal is to bring together a wide range of people working directly with those suffering from Alzheimer’s disease, or related disorders, to learn from one another, share best practices and find out what can be improved upon.

At the Pittsburgh forum, much of the conversation focused on ensuring caregivers have needed resources. Deafenbaugh said that would make a big difference for her and her husband.

“I get very down sometimes, I’m not going to deny it,” she said, “I take one day at a time. That’s all you can do. If he’s having a bad day, you just have to deal with it and the next day hope it’s a better day.”