Dealing with young-onset dementia

'To get old with Alzheimer's disease is normal. It might be difficult and painful and unpleasant, but it is not unexpected. But to get it at a young age – there is nothing normal about it.” Few people are as well-qualified to make the above assessment as Batya Krauss, leader of a daycare program (in Hebrew) for victims of young-onset dementia at the Jerusalem headquarters of Melabev, an organization that provides a range of services for seniors suffering from Alzheimer's disease and other forms of dementia. While Melabev and other organizations offer programs for seniors with dementia, there are few programs available for young-onset patients who develop dementia at a younger age. While Alzheimer's disease is generally thought of as an illness of old age, young-onset dementia can strike people in their forties and fifties. Dementia is a general term for memory loss and other cognitive abilities serious enough to interfere with daily life. Alzheimer's disease is the most common form of dementia, and involves a degeneration of nerve cells in the brain expressed by a decline in cognitive abilities. When dementia strikes people in the prime of their lives, it is especially tragic. Melabev hosts the only daycare center in the country for young-onset patients. The group, which is called PEIMA, which stands for pe'ilut im mashma'ut (activity with meaning), numbers between nine and 12 participants and meets three times each week, from 9:30 a.m. until 2 p.m., at Melabev's headquarters in the Givat Massua neighborhood in southwest Jerusalem. All the attendees suffer from some type of dementia, though some of them may not have Alzheimer's disease. “We take all forms of dementia, as long as the patients are not violent,” says Krauss. According to Motti Zelikovitch, director of Melabev, between 150,000 and 200,000 people in Israel have the disease. Of that number, says Zelikovitch, between 2% and 4% are young-onset victims. The therapists and caretakers in PEIMA plan programs utilizing music, art, movement and cooking. Patients are occasionally taken on outings to the Israel Museum and outdoor picnics nearby. The sessions provide a needed respite for the patients' spouses and caretakers. Krauss explains that the needs of younger patients are much different from those of older patients. “Since Alzheimer's is not normal or suitable for their age, they are more aware of their illness, much more so than people who get Alzheimer's when they are older. They can't hide it. The treatment is different. Since they are aware of their sickness, they require more acceptance in society. An older person who gets Alzheimer already has a position in society. With younger people, we need to worry about how the environment accepts them.” Adds Zelikovitch, “Older people who come to the daycare center can sometimes sit the entire day in one chair. Younger people with Alzheimer's have a lot of energy. We need to engage them in physical activity.” There is no cure for Alzheimer's, and Zelikovitch says that the disease is more aggressive in young-onset patients. With that in mind, Krauss explains the goals of the center for young-onset patients. “We define ourselves by our cognition, by our past and by our future. The challenge with young Alzheimer's patients is to strengthen their present – not what was, or what will be, but what is my quality of life at this point in time.” The financial burden for young-onset patients is more severe as well. Alzheimer's patients over the age of 67 are eligible for long-term nursing care from the National Insurance Institute, which can help defray expenses for attending Alzheimer's daycare centers, or for hiring a companion or aide. However, victims of young-onset Alzheimer's are not eligible to receive these benefits. Though they are eligible for disability payments, they are no longer able to work, and their spouses may have less time to work, due to the need to care for them. SUSAN LEVIN of Neveh Daniel, located in the Etzion bloc, moved to Israel in 2006 from Potomac, Maryland, with her husband John, an international tax lawyer, and their three children. In 2010, when he was 50, John began to exhibit unusual behavior. He was no longer interested in his work, and was eventually fired from his job. It was only in 2012, two-and-a-half years later, that they received a diagnosis of dementia. Initially, she says, “we didn't know at the time why he wasn't performing.... We couldn't put our finger on anything. “If someone with my husband's behavior had sat down with a doctor presenting exactly as how he was presenting, but he was 30 years older, within five minutes we would have been told that he had dementia,” she explains. “It's not on the radar. It's so atypical – why would you think that a 50-year-old sitting in front of you has dementia?” Levin says that it was impossible to set up an appointment with a geriatrician because her husband was under 65, the minimum age for seeing geriatric specialists. Levin finally found a connection within Melabev who helped set up an appointment with a geriatrician. They soon had their diagnosis. After undergoing a brain scan, John was diagnosed with a degenerative neurological disorder. For a time, John attended Melabev's English-speaking group in Jerusalem. However, Susan explains, “Going to a place with older people was so inappropriate for a 55-year-old. He is very socially outgoing and would talk to the old people. He was in a safe environment, but it didn't cater to his particular needs or interests. His needs and interests are different as a 50-year-old than that of a typical 80-year-old.” Once John was placed in the young-onset daycare, “he finally was in a place with people who shared some commonality with him,” says his wife. She said that, given his mental condition and rapidly shrinking vocabulary, it is difficult to know how much he really gets out of the program. Yet, she says, “there is comfort in that at least we acknowledge here that this is being governed by their world and not by our worlds.” Levin says that the difficulty of being disabled where the disability is not obvious, and the accompanying reactions that arise, can be significant. Her husband, who has a youthful and healthy appearance, loves to go to different places in Jerusalem. However, major difficulties arise whenever he must go through a security check. He cannot understand the simple directions to empty his pockets, or walk through the metal detector. She adds, “Many times service providers want to speak with my husband, rather than deal with me as the head of the household. Sometimes, I'm tempted to let them try, but it gets tiresome very quickly.” KRAUSS, WHO studied social work at Bar-Ilan University, developed and heads the PEIMA program. She has been working at Melabev for the past eight years, and has been working with the young-onset program for the past three years. Before becoming a social worker, Krauss studied advanced Talmud and Jewish studies for 10 years at various women's Talmud institutions, including Matan, Beit Morasha, Midreshet Lindenbaum and Nishmat. She was looking for an outlet for the skills she had developed, and taught Talmud at Melabev centers for the elderly from 2011 to 2016. Recalling her Talmud classes at Melabev, Krauss says, “As long as I made sure to teach a total thought every week and did not expect people to remember information from week to week, it was just wonderful.” Krauss is convinced that the spiritual skills that she developed in her studies have been beneficial in her work with victims of Alzheimer's disease. “People have roots, and those roots are spiritual, and you can't do this job without spirituality. “Occasionally,” she continues, “Alzheimer's patients have moments of mental clarity, which comes from their spiritual place.” Levin, whose husband has had dementia for almost eight years, is never certain what the next day will bring. She is determined to treat her husband with dignity. “At the end of the day, he is also God's creation. God has decided this, and how we react to it is a statement of who we are.”

Dealing with young-onset dementia

Few programs are available for young-onset patients who develop dementia at a younger age, PEIMA makesa difference.

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Dealing with young-onset dementia

Few programs are available for young-onset patients who develop dementia at a younger age, PEIMA makesa difference.

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