Removing the stigma of incontinence

Marlene Ceragno and Will Eason, manager of the CFA Englewood Pantry. Courtesy CFA Englewood Pantry

Marlene Ceragno knows that the subject of incontinence is difficult to discuss.

“It’s still a taboo subject,” said the recreational therapist, who works in the senior center at the Kaplen JCC on the Palisades.

Still, Ceragno, a graduate student in gerontology and management of aging services at the University of Massachusetts – and her 90-year-old aunt’s primary caretaker – is determined to educate the public about this sensitive issue.

“My aunt lives on Social Security but is not eligible for Medicaid,” she said. “It took years to straighten out her bills and I got her back on secondary insurance. But then she became incontinent.”

Ceragno said she was shocked to learn the cost of absorbent products.

Talking about the issue at a caregivers’ conference, she realized that her aunt wasn’t the only one facing this financial burden. Indeed, she learned, some seniors were forced to choose between incontinence products and food.

In addition, she said, “I heard stories about grandparents not going to bar mitzvahs or weddings because they didn’t know how long it would take from the synagogue to the catering hall.”

Since there are no programs that offer financial assistance to seniors in need of adult briefs or other incontinence products, “millions of senior adults are becoming unnecessarily homebound,” she said.

Getting permission to pursue the subject for her senior thesis, Ceragno began to take action, testifying at a senior needs hearing in Bergen County and writing to legislators and social service agencies throughout the area. Then, researching diaper banks that exist around the country, she resolved to start one here.

“My idea was to start a drive” for these products “and find places to distribute them,” she said.

Broaching the idea of a diaper drive to the Kaplen JCC, Ceragno found a receptive ear. Efforts to collect the products, publicized through Facebook and email appeals to JCC members, netted 5,000 adult briefs and other incontinence products in just over a month.

“There are a lot of generous people where I work,” Ceragno said, adding that the Center for Food Action will distribute the products, “and hopefully Meals on Wheels. There’s such a stigma attached. Their first reaction was, ‘Our clients won’t accept these products from volunteers.’ I was heartbroken, but they’ve since changed their mind.

“The big barrier is finding other places to host a drive because it’s not popular and catchy,” she added. “We’re still trying to educate the seniors in our program. I tell them that people are living longer and that it’s a tool of aging, like reading glasses.”

Englewood Hospital will hold a drive that will start in September; in October, a rehabilitation center in Hackensack will collect the products.

“It’s best to hold these drives at different organizations every month,” Ceragno said. “That’s the model of the other diaper banks. Otherwise [collection bins] become invisible.”

On August 28, the JCC will sponsor a meeting bringing together legislators who are seeking funding to help seniors meet the costs of absorbent products. Among them are State Senate Majority Leader Loretta Weinberg and Assemblywoman Valerie Huttle (Dist. 37).

Ceragno noted that the two legislators, together with Congressman Bill Pascrell, Jr., are exploring ways to find funding through Medicare, insurance carriers, and other New Jersey state programs.

According to a statement from Dylan Hawkins, Sen. Weinberg’s legislative director, “While it would be possible to model state legislation on the already existing Hearing Aid Assistance for the Aged and Disabled Program, this would not be the best way to deliver relief to seniors. Currently, under [this program], recipients can get reimbursed up to $100 per calendar year for the cost of a hearing aid (which can range from $1,000 to $6,000). The program would not subsidize costs on a continual basis as needed, which it seems would be desirable for incontinence products. We are still investigating whether or not Medicare would be a better option. Currently, this issue is still under review.”

Ceragno hopes that the JCC meeting will kick off a public educational effort and make the subject easier to talk about.

“I hope more people will understand the situation,” she said, noting that manufacturers such as Kimberly-Clark are now launching advertisements for personal products featuring noted celebrities.

“It has to be out there,” she said. “We’re all living longer.”

Ceragno pointed out that men have a harder time dealing with incontinence than women do.

“We’ve been buying absorbent products all our life,” she said. “It’s devastating for them.”

“I want us to follow Australia’s lead and get seniors funding,” she said. “As baby boomers get older, this will be more prevalent. The products are out there. We need to get rid of the stigma.”

She pointed out that seniors who remain socially active remain healthier, both physically and emotionally.

“Since people are living longer and leading more active lives, it is critically important to invest in programs that can help them afford products that will allow them to remain engaged in their community,” Ceragno said.

To learn more, go to www.facebook.com/adultcarebrief. For more information on the Aug. 28 program, email Rochelle Lazarus at rlazarus@jccotp.org.