Alzheimer’s Foundation of America offers support for those living with dementia

Charles Fuschillo believes Alzheimer’s disease should be declared a national epidemic.

The leader of the Alzheimer’s Foundation of America, he says 5.8 million American’s are living with the disease today, including more than 180,000 in New Jersey alone. And its impacts extend well beyond those who suffer from the cognitive impairment and the other often-devastating effects that define the condition.

“Use a multiplier of three or four for the caregivers, and you can see how widespread and prevalent it is in the state,” he said.

Fuschillo said it’ll cost the nation $290 billion to care for those with Alzheimer’s and related dementia. His organization, which funds research into treatments and the search for a cure, also provides support to individuals, families and caregivers, including conferences that offer free memory tests.

Asha Dave was among who attended one such AFA event recently in PiscatawayAs she waited to take a memory test herself, she said she was worried because of her family history: Her father died from Alzheimer’s and her 71-year-old sister also has it.

“I don’t like the way my sister is,” she said. “Because she was very intelligent. Very educated. But now, she’s absolutely — she does not know what she’s doing. She does not have any idea.”

Also on hand was researcher Peter Davies who said that, while there is no cure for the disease, there are more than 2,000 ongoing clinical trials involving Alzheimer’s.

“One of these might hit. One of these might actually work. I have my fingers crossed,” he said.

Many of the clinical trials have targeted two unusual lesions — amyloid plaques and tau tangles — that appear in the brains of Alzheimer’s patients, Davies said. In some, trial drugs have been shown to suppress amyloids, but not in a way that manifests itself outwardly among those taking them.

“The problem is — the patient doesn’t know it’s working. There is no impact on the disease in the patient,” he said.

Davies also noted that Biogen, the big pharma company, had reported success with aducanumab, a human antibody that fights amyloids, then terminated its trial earlier this year, only to subsequently revive its investigation.

Trials of the first antibodies targeting tau tangles are just getting underway.

With no cure, experts are also focusing on how to reduce the risk of developing the disease, and to lower the risk of the dangers that plague people who live with it.

Gene Saunders, the CEO of a non-profit dedicated to the prevention of wandering by those with dementia, urged caregivers and family members to look for clues in elderly people who could be losing cognitive function, using an example to make his point.

“Then we noticed that she wasn’t answering the phone,” said Saunders, who founded Project Lifesaver International in 1999. “Why? Because she said she didn’t feel like it. Well, the truth was, she had forgotten how to use it. “

Saunders said it’s important to make remove items that might trip patients from their living spaces and to install special locks to keep them from wandering outside, especially at night.

“I look at wandering and falls as the two most dangerous situations by far for people with dementia,” he said. “When they go out, oftentimes they are not dressed for the weather or the environment.”

In addition to getting a memory screening, AFA lists a number of steps for “healthy aging,” including eating well, getting checkups and staying active. A study showed that people who dance have a lower incidence of Alzheimer’s.

Crossword puzzles are also helpful in keeping the mind stimulated. And organizers at the conference used a unique crossword puzzle to demonstrate what it’s like to have Alzheimer’s. Nobody in the audience could solve it  — because every clue came from a dementia patient’s life, day-to-day items they can no longer remember.