Early Onset Dementia (EOD) - One Woman's Journey

"It was April of 2019 when we published a well-received article about Patti Barr Hagadorn, a friend of our office who was a regular contributor to the Fort Wayne News-Sentinel, a daily newspaper in Indiana with a history dating back to 1833," said certified elder law Attorney RJ Connelly III. "Sadly, the newspaper suspended operations in November 2020, shortly after the beginning of the pandemic."

Patti Barr Hagadorn

But what makes Patti so special? After all, many writers and columnists have been sent to the unemployment line because of the discontinuance of newspapers in favor of online news reporting, so why was this different?

You see, Patti isn't your regular reporter, she did a unique column about Early Onset Dementia (EOD), and she wrote about it from a personal perspective, she lives with it, and she continues to provide those periodic columns to Connelly Law's Senior Issues blog, "for as long as I can", wrote Patti.

"Patti was attracted to our website and the work our office does with individuals and organizations who help those with Alzheimer's disease and dementia, so she became a member of our site and began contributing some wonderfully insightful information on both a personal and professional level," said Attorney Connelly. "In December of 2021, we published a column by Patti entitled "Listen to Me!" Those with Dementia Deserve to be Heard in which she detailed her experiences with a doctor who looked, as she said, "right past me" when she tried to describe what a certain medication was doing to her. After that blog, I've been asked multiple times about Patti, so we've decided to republish a column from three years ago, with a few updates. I hope you are motivated by her story because we certainly are."

Early Onset Dementia

Before we talk more about Patti, let’s look at some numbers. In the United States, nearly six million people of all ages have Alzheimer’s. Of this group, 80 percent are sixty-five or older, but just 200,000 to 600,000 have EOD, as in Patti’s case.

The research appears to show a strong genetic component to EOD, traced to rare mutations in three genes. The earlier dementia begins, the more likely it is to be genetic in origin, according to researchers. James Giordano, Ph.D. professor at Georgetown University Medical Center, says inflammation is believed to be what triggers changes in the brain resulting in the diagnosis of EOD.

James Giordano, Ph.D.

“A high level of inflammation in the body can cause diabetes and/or heart disease, among other things,” he explains. “That same type of inflammation is now believed to induce actions in the brain that lead to dementia symptoms.” There are also other probable causes of EOD including a history of traumatic brain injuries and alcohol abuse.

Some researchers feel that EOD is an extremely aggressive form of the condition while others say the rapid decline is the result of a late diagnosis. In either case, it is a form of dementia that doesn’t get the attention it deserves because of the relatively small number of people who develop it.

Because dementia is usually associated with those over the age of sixty-five, doctors don’t usually consider this as a possibility when a younger person presents with the symptoms. Most medical providers are not trained to diagnose EOD so obtaining an accurate diagnosis for the presenting symptoms can be a long, difficult, and often frustrating process for all concerned.

A Family and EOD

For Patti, she attributes her EOD to traumatic brain injuries she experienced early in her life. “My first injury was due to my being a silly child thinking I could balance on a narrow ledge,” wrote Patti. “I fell and hit the back of my head.” But the most severe injury she suffered occurred in 1974, shortly after graduating from high school.

A 1974 car accident head injury

“[It] was on September 17, at 7:17 pm. It happened at the corner of Clinton and Pontiac Streets [in Fort Wayne]. A drunk driver ran a red light and the car I was in had no seat belts. I remember the Jaws of Life cutting me out of the wreckage,” Patti remembered. “I spent 11 days in the hospital. I was 18 years old and had just graduated from Snider High School.”

Upon being released from the hospital, the family thought that she had fully recovered, but her on 19th birthday, she had a seizure and ended up on a cocktail of anti-seizure medications that she said worked “fairly well”, but the injury and the treatment she was receiving presented with other obstacles as she tried to live an otherwise normal life.

"I did manage to get pregnant, only to lose our little boy, Christopher, in my fourth month. We managed to carry two daughters to term but with much difficulty. Amy [their youngest] is thirty-six and has cerebral palsy." --- Patti Barr Hagadorn

Shortly thereafter, she met and married her husband, Jim Hagadorn, and like any other couple, they planned to start a family but then came an ominous warning from her medical providers. “My doctor said conceiving a child would be difficult; the medicine could possibly affect the baby,” said Patti. “I did manage to get pregnant, only to lose our little boy, Christopher, in my fourth month.”

“We managed to carry two daughters to term but with much difficulty. Jamie is now 41 years old and married to a wonderful man named Chris. Amy is thirty-six and has cerebral palsy.”

When she reached her mid-fifties, Patti’s health began to change dramatically. She started having severe and repeated episodes of forgetfulness that her family doctor was unable to explain so he referred her to a specialist. After a series of tests, she received the stunning diagnosis – Early Onset Dementia. Since that time, the entire family has been forced to make life-changing adjustments, including her husband Jim leaving a 42-year factory job to assist Patti on a full-time basis.

Patti and Jim Hagadorn

Patti’s decline has been slow, and the co-occurring diagnosis of Sundowner’s Syndrome, a neurological phenomenon associated with increased confusion and restlessness in patients with dementia when daylight wanes, has compounded the problem. Because of this, she needs to get to her bedroom quickly and turn the lights on or suffer bouts of confusion, agitation, and delusions.

In an interview with Barb Sieminski, a freelance contributor to Today’s Catholic, a newspaper that serves the Diocese of Fort Wayne-South Bend, Indiana, the couple shared many thoughts on the diagnosis and their future together.

“Each day Patti wakes up hoping to remember everybody and what is going on,” said Jim, adding that they will celebrate 41 years of marriage this year. Each day brings new struggles for the couple, who are still trying to be strong in coping with the progressing illness, Jim admitted. “I still cannot comprehend what is happening to Patti, but the blessing in all of this has brought each of us much closer to God, whom we rely on more and more.”

"I remember the good old days, but I cannot remember my address, my husband's middle name, what I ate and where I live. The list is long but not my stamina." --- Patti Barr Hagadorn

“I remember the good old days, but I cannot remember my address, my husband's middle name, what I ate, and where I live. The list is long but not my stamina,” shared Patti.

“The bathroom confuses me. Dressing confuses me, counting money and signing papers are a no-no. They [told] me Jamie's wedding was beautiful. I do not remember. I am a retired florist and did the flowers, but I could not recognize my work in the pictures. This disease is terrifying to all who are affected. I watch my family members' faces as I struggle to speak. They always say, ‘take your time’, but time is not exactly on my side these days,” continued Patti.

The Pen as Her Sword

Not one to take things sitting down, Patti decided to battle dementia in a unique way by penning a newspaper column for the Sentinel in which she journaled the ongoing changes in her life. Her columns were humorous and inspirational. In one column, she provided some especially poignant thoughts after looking at pictures from her childhood and the "good times" she had with her grandparents.

Christmas memories with sister Peggy

“Sometimes I re-live those days. I can still smell the sheets and blankets kept in a chest by the side of her home. A door that was never locked by the way. I remember snuggling into the makeshift bed awaiting the next day’s fun. Then 2 o’clock in the morning would roll around and I would have to give up dreams to take my baby sister home. She needed her bed, her blankie, and her familiar surroundings. Not me! I was bound and determined to pump water, play games, and drain Grandpa Mel’s beer bottles. I also ate dog food they kept in a barrel in the kitchen. Perhaps if Grandpa would have let Peggy (my sister) drain the last tiny bit of beer we would have all gotten a good night’s sleep.”

Seems like a memory that any of us would have and enjoy, but for Patti, memories like this will soon be gone. She wrapped up this column by writing, “Thank you, God, for one more column. Lots of neato keen love from a happy-go-lucky person with a slight memory problem.”

Unique Issues with EOD

Alzheimer’s and any form of dementia is a heartbreaking diagnosis, but EOD is especially insidious. When a diagnosis is made for someone over the age of sixty-five, they may have someone home to help them or qualify for services through Medicare. But not so for those who are younger.

“EOD has consequences that those who develop dementia over the age of 65 may not face, such as in Patti’s situation,” said Attorney RJ Connelly III. “Because most who begin experiencing these symptoms are still working, the inability to perform the tasks they once did may be viewed in a different light by employers and co-workers, resulting in someone losing their job or just quitting because of embarrassment. When this happens, they lose benefits and health insurance, things they so desperately need as the disease progresses.”

“The medical costs associated with this diagnosis are staggering. For instance, those with a disabling cognitive impairment are four times more likely than those of the same age with normal cognitive status to have been hospitalized in the previous two years,” continued Attorney Connelly. “Their out-of-pocket costs for medications are four times higher, and they are two times more likely to have received medical home health care. Without insurance, their life savings and retirement accounts are depleted rapidly.”

"The medical costs associated with this diagnosis are staggering...out of pocket costs were four times higher, they are two times more likely to have received medical home health care. Without insurance, their life savings and retirement accounts are depleted rapidly." --- Attorney RJ Connelly III

Data also shows that just one-third of those aged 55-64 with such a cognitive impairment are receiving social security disability payments (SSDI), something they paid into during their working years. Some people who apply for SSDI have been denied because they do not fit the "disability requirement" and one client of the law office was denied twice and told that as their cognitive abilities declined, they could be “retrained”.

Although families usually provide care at home for as long as possible for people of any age with dementia, in the late stage of the illness, most people require nursing home care. Some use assisted living and other paid long-term care services, such as adult daycare, respite care, and in-home personal care, at various times in their illness. And a problem exists here as well.

“When we talk to individuals who have EOD, they tell us that they feel ‘out of place’ and feel they do not ‘fit in’ with the services provided,” stated Attorney Connelly. “They say it would be a huge benefit to them to meet other people and families struggling with this type of dementia, but such resources are sparse. They also say they would benefit from transportation services and help with school-age children who are still at home, services that do exist for other medical conditions.”

For those who provide care, training to address EOD is not generally available due to the lack of information on this type of dementia. Continued research is offering more clues into this condition, and given our rapidly aging nation, there is a need for more training and services for those with EOD and all types of dementia.

Caregiver Issues and EOD

We recently concluded a series on caregiver issues with those who have Alzheimer's disease and other older age dementias, however, caring for someone with EOD presents a particular set of problems, with financial being a major one.

"Not only does the person with EOD leave employment at an early age, but so too the caregiver, usually a spouse or older child, to provide care for their loved one," stated Attorney Connelly. "It's quite a dilemma for them, if the spouse stays at work, they often can't afford the cost of paying for an in-home care provider, and if they quit their job, they struggle to survive. In many cases, the caregiver feels as much robbed of their future as the person with EOD."

"It's quite a dilemma for them, if the spouse stays at work, they often can't afford the cost of paying for an in-home care provider, and if they quit their job, they struggle to survive. In many cases, the caregiver feels as much robbed of their future as the person with EOD." --- Attorney RJ Connelly III

And because those with EOD are quite young, they still have energy, enjoy being outside and even doing long walks, something adult daycares that are normally designed for older people cannot provide, leaving the burden on family members. Research has also shown that caregivers for EOD patients had such a degree of distress that they could be considered to have a "formal psychiatric illness".

"For Patti and Jim, they have found ways to make their lives work around her diagnosis of EOD, but for many others, this is not the case," said Attorney Connelly. "There still exists a lack of understanding for those with EOD and their caregivers, and we hope that Patti's columns about her journey into the mysterious world of dementia will lead to a better understanding of this type of dementia and result in a better quality of care and compassion for those with EOD and their caregivers."

Click below to learn more from the Alzheimer's Disease & Memory Disorders Center at Rhode Island Hospital

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