Dementia

“It’s as though he has died a second time,” the mourner intoned softly to the menachemei aveilim who were gathered around to pay their respects. “We first noticed it when he kept getting lost and had no sense of direction. He continued going downhill, until it got to the point where he didn’t recognize me anymore. That was when I lost my Dad the first time.”

Unfortunately, this sentiment at shiva is very common. Dementia is like a thief that steals the very essence of a person. It can cause an intelligent, talented individual to become a prisoner in his own body. Dementia comes in all stripes and colors, expressing itself in many ways. It doesn’t discriminate against any culture, race, or religion. Victims include prominent figures, such as judges, doctors, and rabbis. According to the NIH, dementia affects four percent of the population by age 75 and 20% by age 85.^[1]

No Single Cause

There are numerous types of dementia, with the most common ones being Alzheimer’s, Lewy body, vascular, frontal temporal, and early onset. Other conditions that mimic dementia are PTSD and depression. A urinary tract infection in adults can also mimic signs of dementia, such as confusion, agitation, and delirium. Fortunately, this can be treated with antibiotics.

Individuals with traumatic brain injury (TBI), are at an increased risk of dementia. This can occur with those who participate in sports such as rugby, boxing, riding motorcycles without a helmet – or anything that damages the brain. I remember Father Thomas,* one of my patients at Sheppard Pratt’s neuro-geriatric psychiatric unit, who had been in a serious car accident and suffered from TBI. He routinely used his wheelchair as a weapon, attempting to run over the staff. He had no filters and would act use vile language without hesitation. Caretakers and family have to remind themselves that such behavior is a result of the illness, not who the person truly is.

Fiblets

In the context of dementia care, fiblets are therapeutic “white lies” or small stretches of the truth. They are a helpful, non-pharmacological approach to dealing with some of the challenging symptoms of memory loss.^[2] 

A good friend of mine grew up with a dog named Fido. Her mother was very attached to the dog. Fido passed away at about the same time her mother’s dementia was rapidly progressing. The mother asked where he was. When she learned that Fido had died, she burst into tears. She asked about Fido many times, and each time she heard about his demise, she would burst into a fresh bout of tears. After a while, when her mother would ask, my friend’s answer (a fiblet) was “Oh, he’ll be coming back soon. Tatty is taking him out for a walk.”

Fiblets are used to reassure and calm individuals. The idea is that a therapeutic fib is kinder and prevents the arguments, agitation, and distress that might arise when a person with memory loss is confronted with a truth they cannot comprehend. With this framing, a small lie or a “creative mistruth” is a more compassionate choice. It reduces stress for caregivers, too.

Case Histories

Two of the most common delusional beliefs of people with dementia are stealing money and infidelity.

Dovid* has always been a kind and generous fellow, giving large amounts of tzedaka to multiple individuals. Recently, he becomes furious with the meshulachim who come to his door. “You are coming here to steal my money! You think you can come in and take everything I own!” With that he slams the door in their faces. His wife gently told him that this was not a nice way to treat people. Dovid exploded, “You are also trying to steal all my money! I worked hard to make this money, and all you ever do is spend it!”

Jane* had been happily married for 40 years. A few years into the progression of her disease, she began accusing her husband of being unfaithful. On a couple of occasions, she even locked him out of the house. After several more similar incidents, Jane experienced severe regret and became very depressed. She was so depressed that she couldn’t even get out of bed. For three days, she lay there, refusing to talk or look at her husband. On the fourth day, he found an empty pill bottle by her bed table. He called 911; she was taken to the ER and eventually transferred to Sheppard Pratt’s neuro-geriatric unit.

There are other dangerous types of delusional thinking.

Sara* had been leaving her house without anyone knowing and wandering outside. After a number of frightening “escapes,” it was decided to have an electronic GPS tag secured to her ankle. These tags pinpoint the exact location of the person 24/7, which enables family members to find them almost instantaneously.

Sam’s* condition deteriorated early on. One day, he went for a walk and saw a man coming towards him. In his state of confusion, Sam erroneously thought he was about to attack him. He grabbed a glass bottle and slammed it down hard on the poor innocent man’s head! Bystanders immediately called the police, who took him to the ER. Sam remained there for more than 12 hours and was getting progressively more agitated and aggressive. Finally, he was transferred to Sheppard Pratt’s neuro-geriatric unit. After taking various antipsychotic medications, he was stabilized and released back to his home three weeks later.

Caregivers

Family caregiving for a loved one with dementia is associated with high levels of stress due to behavioral and unpredictable disturbances.^[3] Caregivers are likely to experience depression, anxiety, and a sense of social isolation. They often experience feelings of shame and embarrassment, which arise from the patient’s behaviors. This leads the caregiver families to suffer much more than the people they care for. I remember a woman whose 75-year-old husband was struggling with this terrible disease. She lamented, “These were supposed to be our golden years!”

There are thousands of support groups across the country for families of dementia victims. Tragically, there are also support groups for teenagers with a parent who has early onset dementia. Teepa Snow MS, OTR, occupational therapist and fellow of the American Occupation Therapy Association, is an excellent source of online information for caregivers. She created the GEMS States Model of the levels of dementia^[4] and has produced many fascinating and entertaining video clips. Two of my favorites are “Caring for Someone who has Dementia” and “The Ten Early Signs of People with Dementia.” These clips give entertaining chizuk to caregivers and detail the particulars and facts of the disease. Although books on the topic of dementia abound, unfortunately, the average caregiver has no time whatsoever to read them.  

Hope

For many years it has been understood that dementia can only get worse. Now, however, there is hope. Researchers at the University of Texas Medical Branch recently discovered a significant advancement in the fight against neurodegenerative diseases such as Alzheimer’s disease using a nasal spray.^[5]  

In Israel, which has always been at the forefront of science and technology, researchers at Hebrew University are contributing significant advancements, including the development of molecules that prevent neuronal death in genetically modified mice with Alzheimer’s, pioneering immunotherapies to slow brain aging, and discovering early diagnostic markers for Alzheimer’s. Other efforts focus on new treatments for early-stage Alzheimer’s, such as the recent approval of Lecanemab in Israel, and research into nanotechnology for drug delivery to the brain.  

In another study, Alzheimer's model mice regained their cognitive abilities. 6 Israeli scientists gave an artificial molecule they invented to 30 mice exhibiting Alzheimer’s-like symptoms and found that all of them recovered, regaining full cognitive abilities. They stress that this was a small sample of mice and that human testing is far off, but they believe the result indicates that within a decade, their synthetic molecule could be developed into a drug for treating the degenerative disease.

An interesting article on TimesofIsrael.com says this:

In a world first, researchers at the Hebrew University have discovered a distinct cellular pathway in the brain that indicates markers for future onset of Alzheimer’s disease, some 20 years before symptoms would be exhibited. This early detection could eventually lead to a treatment to prevent the degenerative disease.

The study shows that Alzheimer’s disease is not just a form of accelerated aging but follows a different cellular path,” said Prof. Naomi Habib and PhD students Anael Cain and Gilad Green of Hebrew University, who led the team of researchers at Columbia, Harvard University, and Rush Medical Center in Chicago. Now that research has found the “molecular markers,” she said, “we can predict if an individual is on the cellular path to healthier aging, or a path to Alzheimer’s. This discovery will help lead toward appropriate treatments. We now believe we know what’s driving the disease, but we need to prove that changing the response would reverse that. ^[6]

Baruch Hashem, many inroads have already been made to slow the course of dementia. With Hashem’s assistance, dementia’s victims and their families will hopefully one day find relief from this horrific disease. May it be eradicated soon, and in our day.

Yehudis Rochel Novice was a nurse on Sheppard Pratt’s neuropsychiatric unit for 13 years. She is currently a nurse at L’Chaim Adult Day Center.

* a pseudonym