The Jerusalem Post ePaper

Caring for the country’s 1.2 million family caregivers of the aged, sick and disabled

• By JUDY SIEGEL-ITZKOVICH

When an elderly woman was diagnosed in the early stages of Alzheimer’s disease, she said mournfully, “I wish the doctor had told me I had cancer. There are treatments, and at least then I would have some hope!”

Her daughter, Lea Goldberger – the community relationships manager of EMDA (the Israel National Association for Alzheimer’s Disease) – was initially saddened and shocked. Alzheimer’s is a degenerative disease, but there is hope that she can nevertheless enjoy life when she is able and give the right support, Goldberger said at the Israel Aging Summit – “Engaged Aging in a New Era” – held recently at Jerusalem’s Orient Hotel by the Bader Philanthropies foundation.

In the session on “Promoting Family Resiliency as Loved Ones Age,” Goldberger said that when her mother was diagnosed four years ago with dementia, she insisted to her family that they hide the fact that she had Alzheimer’s.

“She isolated herself from her best friends because she didn’t want to be pitied, so then I couldn’t talk about it either, and I couldn’t get any help at my workplace or anywhere else. I truly dreaded the idea that one day, my mom would forget my name. Stigma can be broken, as with diseases such as HIV when effective treatments become available,” she said

The later stages of Alzheimer’s and other diseases of dementia involve severe memory loss, major communication difficulties, bad hygiene, and a loss of identity and significant relationships.

“Unfortunately, stigma prevents people from obtaining information about treatments. EMDA has a Facebook group for caregivers, but I was ashamed to have my name known so I didn’t join the group. My solution was to go to work for EMDA, so now I have all the information and know where to get help,” Goldberger continued. “But an estimated 150,000 Israelis have dementia, and their caregivers don’t have this option. We need ambassadors to break the wall of stigma.”

EMDA encounters many patients and their families who think nobody has to know of their having this illness, said Goldberger, “We are trying to get people to talk about it. Newspapers, TV programs and websites don’t want to interview us about Alzheimer’s. Who wants to read a sad story? But awareness is developing. We at EMDA decided that it’s better to say ‘People with dementia’ than ‘dementia patients’ and to say the person is ‘still capable of’ rather than ‘suffers from.’”

Goldberger declared that she wants people “to talk openly about dementia, to use supportive language that is not stigmatizing, to correct myths and stereotypes, to educate themselves and others. We want the word ‘DEMENTIA’ to appear on billboards so that families will be aware and able to discuss it and patients will be able to get an early diagnosis so they can get treatment that will slow the development of the disease.”

EMDA CEO Dr. Nati Blum recalled that she used to work in a nursing home for people with dementia.

“No one ever remembered my name, but looking at their faces, I saw they were happy to see me. I used to dance with them, give them ice cream, cut salad with them. They were thrilled. That’s what I teach caregivers: Help them enjoy what they can do now.”

INCREDIBLY, 1,200,000 people out of the country’s nine million Israelis are at least part-time caregivers for children, parents or other family members who are ill, injured or disabled, said Rachel Ledani, a social entrepreneur and family caregiver who out of idealism founded the nonprofit organization Caregivers Israel (caregivers.org.il). This organization has leading experts with extensive personal and professional experience in the field and operates with a deep commitment to leading a significant change in the field.

It was established in Zichron Ya’akov eight years ago to promote awareness, recognition and services for caregiving Israelis – 55% of them women, 48% caring for a parent, and most 40 years and older. The organization provides free services, promotes recognition and appreciation, explains rights and rules that enable caregivers to continue in their roles while maintaining their own health and quality of life. Caregivers Israel also delineates the need to public and elected officials, promotes legislation and develops evidence-based services for caregivers.

“We want to improve the lives of caregivers. Former US first lady Rosalynn Carter once said that there are four kinds of people in the world: those who have been caregivers, those who are now, those who will be and those who will need caregivers. I have been. My husband had advanced cancer 15 years ago and survived. My father, 84, suffers from dementia, so my mother and I are taking care of him, and I will probably be my mother’s caregiver in the future. And I know that everyone, at least once in one’s life, will need a caregiver, and so will I.”

Caregivers are at risk of a decline in their own physical and emotional

health because they are often so overburdened. Exercise, meditation, eating right and taking time off are necessary to go on, said Michal Manasseh of Life’s Door, a nonprofit movement to empower hope, meaning and quality of life throughout illness, aging and at the end of life. Taking better care of themselves reduces burnout and helps caregivers get more out of life, she said.

A whole new group of caregivers were suddenly thrust into their roles

when COVID-19 came to Israel. They didn’t have a strong support network, said Ledani. “There is no very good term in Hebrew for the word. Metapel does not give a real sense of really caring. Bat-mishpacha metapel [a family member who takes care] doesn’t reflect what I feel. Caregivers need sustainable support to maintain resilience. Some people are given this duty for 10 or 20 years, so they need long-term support. We in the organization thought workplaces

were the best place to provide a support network,” continued Ledani.

“Around the world, this phenomenon is recognized. One in four people at workplaces are caregivers. Their productivity declines. As the population ages, the pressure on workplaces increases. It’s worthwhile for businesses, government bodies and others to manage caregivers, because employees in this situation become more productive, and the organizations get a good name.”

Israel’s Civil Service Commission (CSC) is responsible for 60 government offices and units, and 85,000 of their employees are caregivers or soon will be. There are 120 staffers designated by law to provide assistance to caregivers, and Ledani’s organization trained them. They must pass courses, make their presence known to all employees and organize discussion groups, but it takes time to change the work culture.

The support provided to state employees includes allowing flexibility at work. Instead of taking off six days with pay annually for taking care of your parents and others, you can take 24 days. Caregivers who work in CSC institutions can suddenly leave in an emergency or arrive late.

“We are working with ministries to publicize this. They must do it, but it takes time to change culture.” Ledani revealed that a few weeks ago, the Israel Defense Forces adopted a policy to help soldiers and officers who are caregivers.

HEALTH

en-il

2022-07-03T07:00:00.0000000Z

2022-07-03T07:00:00.0000000Z

https://jpost.pressreader.com/article/281728388214633

Jerusalem Post