Early Onset Dementia - One Woman's Journey

Meet Patti Barr Hagadorn, age 63, a friend of Connelly Law Offices from Indiana. She writes a very unique column for the Fort Wayne Sentinel, a well known newspaper in America's heartland.

What makes Patti's writings so unique? She has been diagnosed with early onset dementia (EOD) and is using the column to document her descent into this dark world.

Before we talk more about this remarkable lady, let’s look at some numbers. In the United States, nearly 6 million people of all ages have Alzheimer’s. Of this group, 80 percent are 65 and older and less than 200,000 have EOD, as in Patti’s case.

Research appears to show a strong genetic component to EOD, traced to rare mutations in three genes. The earlier the dementia begins, the more likely it is to be genetic in origin. 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.

“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 possible 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 any 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 65, doctors don’t usually consider this as a possibility when a younger person presents with the symptoms. Many medical providers are not trained to diagnose EOD so obtaining an accurate diagnosis for the presenting symptoms can be a long, difficult, and frustrating process.

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,” said Patti. “I fell and hit the back of my head.” But the most serious injury she suffered occurred in 1974, shortly after graduating from high school.

“[It] was on September 17, at 7:17pm. 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 stated. “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.

She met and married her husband, Jim Hagadorn, and like any other couple, they planned to start a family but then came a 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 39 years old and married to a wonderful man named Chris. Amy is 34 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 a stunning diagnosis – EOD. Since that time, the entire family has been forced to make life-changing adjustments, including her husband Jim leaving 42-year factory job in order to assist Patti on a full-time basis.

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 Seiminski, 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 the future.

“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,” shared Patti.

“The bathroom confuses me. Dressing confuses me, counting money and signing papers are a no-no. They tell 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.”

As stated earlier, Patti has decided to battle dementia in a unique way by penning a newspaper column for the Sentinel in which she journals the ongoing changes in her life. Her columns are humorous and inspirational. In a recent column, she provided some especially poignant thoughts after looking at pictures from her childhood and good times with her grandparents.

“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. Lot’s of neato keen love from a happy go lucky person with a slight memory problem.”

Her contact with me has been through the written word and text messages, telling me that she now has difficulty talking on the phone, but Jim would be there to help – and he has. Jim has sent me 19 of Patti’s columns which I will be sharing in future blogs as we follow this couple’s journey.

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 65, they may have someone home to help them or qualify for services through Medicare. But not so for those who are younger.

“EOD has many 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 were four times more likely than those of the same age with normal cognitive status to have been hospitalized in the previous two years,” continued Connelly. “Their out-of-pocket costs for medications were four times higher, and they were two times more likely to have received medical home health care. Without insurance, their life savings and retirement accounts are depleted rapidly.”

Data also shows that just a third of those age 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 I have worked with 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 day care, 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 Connelly. “They say it would be a huge benefit to them to meet other people and families struggling with this type of dementia, but it seems 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 the rapidly aging nation, there is a need for more training and services for those with EOD and all types of dementia.

“Here at our firm we continue to see more and more dementia related needs for our clients and their families, and we expect this trend to continue. As a result, we are developing an innovative and unique program to help train nursing facilities, assisted living programs, senior centers, families and the community on the issues associated with dementia,” said Connelly.

“This program, which will be offered at no cost, will take something considered intangible like empathy and makes it tangible by allowing participants to experience the world of someone living with this condition. It will be powerful and thought provoking. We plan to announce the availability of this program in the very near future.”

Attorney Connelly practices in the area of elder law. This area of law involves Medicaid planning and asset protection advice for those individuals entering nursing homes, planning for the possibility of disability through the use of powers of attorney for the both health care and finances, guardianship, estate planning, probate and estate administration, preparation of wills, living trusts and special or supplemental needs trusts. He represents clients primarily in the states of Rhode Island, Connecticut and the Commonwealth of Massachusetts. He was certified as an Elder Law Attorney (CELA) by the National Elder Law Foundation (NELF) in 2008. Attorney Connelly is licensed to practice before the Rhode Island, Massachusetts, Connecticut, and Federal Bars.

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