With the number of Americans suffering from Alzheimer’s disease expected to rise — from 5 million to 16 million by 2050 — advocacy is crucial for the Alzheimer’s Association.
As such, the Alzheimer’s Association Delaware Valley Chapter created a Jewish outreach initiative to spread that awareness through public forums, specifically geared toward clergy.
Gwen Goodman, executive director emerita of the National Museum of American Jewish History, worked as the liaison between the Alzheimer’s Association and the Jewish community. She said the association realized the Jewish community in particular was not making use of the services they offer — including educational support, care consultations, legal elder care advice, and a 24-hour help line, all of which are free.
“It’s psychologically very interesting,” Goodman noted, “that other groups were using it and yet we have a large Jewish community and they weren’t using [it],” which is due to the disease’s stigma.
Usually for people with the disease, they tend to hide it, afraid to show family or friends that they are “failing.”
“It’s very hard to admit something like that to yourself,” said Goodman, who went through a similar trauma, cancer, 35 years ago. “And in most cases a lot of their loved ones … want to protect them from everyone [else].
“There’s something among Jewish people that they’re just not willing to come out with it right away.”
When Goodman had cancer, others kept her illness a secret, too; some would point to her privately, whispering, “Oh, she has the big C.”
She encourages people with the disease and their loved ones to continue living life as normal as possible; “be out in public.”
She discussed this further with her clergy at Har Zion Temple, which resulted in the Rabbi Forum Nov. 6, essentially a clergy education day to discuss the impact of Alzheimer’s on congregational life. The association also held a general workshop Nov. 1.
“These things are available for people if they’re willing to come forward,” she said. “You do need people to help you and give you these little tidbits that really can make big differences when you’re caring for someone.”
Rabbi Richard Address, director of Jewish Sacred Aging and a member of the Alzheimer’s Association Jewish Advisory Committee, added that clergy can be important confidants for families or individuals seeking help for a loved one battling the disease.
“The implication is long term for families and congregations to have to step up in the caregiving and support way,” he said. “This is a holistic approach.”
Alzheimer’s is the sixth-largest cause of death in the United States. The goal is simply to raise awareness through these public forums.
Clergy can be resources in these times of need, Address noted, providing support groups, financial, legal and social service support, lifelines, and caregiver support — whose needs should not be forgotten either.
More than 15 million Americans provide unpaid care for people with dementia-related diseases — an estimated 18.2 billion hours in 2016.
“This thing is becoming so pervasive, sadly, and there’s no cure,” he said. “So the spiritual issues are overwhelming.”
Krista McKay, Alzheimer’s Association Delaware Valley Chapter director of programs and services, hopes more people become aware of the free services they offer.
“We want to empower people in a leadership role within faith communities to be able to talk intelligently about the disease and know the resources that are out there, because a lot of people in faith communities will use that person in a leadership role as a confidant,” she said.
The faith outreach initiative takes form in other groups — like the National Hispanic Council on Aging, or in Catholic, Baptist and Indian communities — to attempt to eradicate stigmas associated with Alzheimer’s in all communities.
Five of McKay’s aunts had some form of dementia, so awareness is crucial for people like her family.
As such, her mission to help others comprehend this alarming public health issue grows stronger each year, as do the costs. By the end of the year, the Alzheimer’s Association estimated these diseases will cost the U.S. $259 billion — and $1.1 trillion by 2050.
“The rabbis and pastors, they understand what the nuances are for caregiving — they’re not going to come away as experts after [the forum], but it opens the dialogue to get them in the fold for us so we can provide ongoing support and information,” she said.
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