- Early onset Alzheimer’s disease (EOAD) is Alzheimer’s disease diagnosed before the age of 65
- EOAD is often genetically related and those who experience EOAD exhibit a more rapid onset of symptoms than those with late onset Alzheimer’s Disease (LOAD)
- Compared to LOAD patients, EOAD patients are more likely to experience depression or other behavioral symptoms such as anxiety before they experience memory issues
- EOAD can devastate financial planning as people with EOAD are generally enrolled in an insurance not intended for elder care
- There is a cultural stigma around EOAD, therefore getting the message out about the disease is vital
- The average life expectancy of EOAD after diagnosis is 8 to 10 years
- EOAD has no cure but treatments such as gene therapy and lifestyle therapy are being developed
There is a misconception that Alzheimer’s disease only affects older people, i.e those generally considered to be 65 and over. The facts say otherwise: According to the Alzheimer’s Association, there are between 220,000 and 640,000 people in the U.S. today who acquired Alzheimer’s Disease at a much younger age. When people develop Alzheimer’s before age 65, the disease is referred to as early onset Alzheimer’s Disease or EOAD. Alternately, early onset Alzheimer’s disease is called younger onset Alzheimer’s Disease. While late onset Alzheimer’s Disease (LOAD) is devastating to millions of families, there are unique challenges for those who develop EOAD.
The obvious reason that EOAD differs from LOAD is the age of onset. Not so obvious is the fact that this age of onset is often determined by one’s genes, or rather mutations of particular genes. While there are some genes that can mutate and put someone at a higher risk for late onset Alzheimer’s disease, most researchers consider Alzheimer’s disease that occurs in the later years to be due to a gradual accumulation of age-related malfunctions. EOAD is most often genetically related and begins at a younger age.
Additionally, while there is some disagreement about the onset of symptoms, some people with EOAD tend to exhibit more a rapid onset of symptoms than those with LOAD. Researchers feel that with both types of Alzheimer’s the disease has been developing for years – even decades – prior to symptoms.
Some studies have noted that the pathological hallmarks (protein deposits called plaques and tangles) are more severe in EOAD than LOAD and may be concentrated in different regions of the brain. These differences in underlying brain structure suggest that treatments for EOAD may overlap with, but not always be identical to, treatments being developed for LOAD.
Most people who develop EOAD carry a gene mutation that puts them at high risk for Alzheimer’s, but some develop the disease for no known reason. Those with early onset familial Alzheimer’s Disease (eFAD) have as much as a 50 percent chance of developing the disease. This type (eFAD) is entirely inherited through genes.
Age and lifestyle are considered big risk factors for developing LOAD, and lifestyle may contribute to EOAD, as well. However, for those who develop EOAD, genetic influences are far more influential than with LOAD, so while age and lifestyle may enter in, they diminish in importance. As mentioned, eFAD is almost entirely gene related.
EOAD has been seen in people under 30, but is more common as people enter middle age. People with eFAD may begin to see changes in their 40s and 50s, though occasionally symptoms can even appear in their 30s.
As with all Alzheimer’s information, opinions change almost daily as the results of new studies surface. Memory issues still seem to lead in apparent symptoms for LOAD, but for EOAD, symptoms other than memory are often observed by family members of the person developing early symptoms of Alzheimer’s.
Researchers at University College London (UCL) studied 7,815 people who have been diagnosed with Alzheimer’s. They wanted to determine if early symptoms of Alzheimer’s differed according to age of onset.
The average age of people in the studied group was 75, with the youngest person being age 36, and the oldest 110. The researchers kept records of symptoms starting with the first probable symptom that made them wonder about the possibility of dementia.
The scientists found that, when they looked at both thinking skills and behavioral problems, the younger people were more likely to experience depression or other behavioral symptoms such as anxiety before they experienced memory issues. Older volunteers more often showed memory loss as their first symptom.
Still, Alzheimer’s seems to be different for everyone, so there is no absolute when it comes to early symptoms.
Symptoms other than memory can include personality changes. This means that someone who was once sensitive to other people’s feelings can easily get confused and lost coming back home after driving to a familiar place. Difficulty planning a sequence of events or making judgments when handling finances are another sign. Paranoia, mood swings and overwhelming fearfulness are two more symptoms.
Again, people vary. There is a saying that when you know one person with Alzheimer’s you know one person with Alzheimer’s. This includes LOAD, EOAD and eFAD.
What it’s like for a family when a spouse is diagnosed:
Carlen Maddux, author of “A Path Revealed: How Hope, Love and Joy Found Us Deep in a Maze Called Alzheimer’s,” explains how his family’s now 17-year-old journey with EOAD began:
“September 23, 1997. The date is seared in my mind. That’s the day for our follow-up visit with the doctor who had run some tests on my wife Martha. “The previous 18 months had been tough on her. Martha had run for the Florida State Legislature as a favored candidate and lost by 20 votes. Then there was the car accident, in which she bumped her head. And other stressful issues related to her health. I don’t remember looking into Martha’s eyes during those two long weeks. I was afraid of what I might find.
“Finally, the follow-up day arrived. We were surprised by the nurse, who said, “I’m sorry, but the doctor had an emergency and was called away. One of his associates will be meeting with you.”
“This associate, stiff and formal, invited us in and sat behind his big desk, waving us to seats opposite him. I don’t remember if we even shook hands. Social skills apparently weren’t a priority for him. He could have been a perfect stand-in for Mr. Spock on Star Trek. “Could this be starting off any worse?” I wondered. I found out soon enough.
“With no introduction, the doctor looked straight at Martha and said in a calm, ice-cold voice, “I’m sorry to tell you this, but it appears likely that you have early onset Alzheimer’s disease.” “We looked at each other in pained bewilderment. Martha’s bright blue eyes instantly dulled. She seemed to have retreated into her shadow. Our world wasn’t turned upside down. It was imploding before our eyes.
“This can’t be happening to Martha,” I thought. “Isn’t this disease something you worry about when you get old?” Martha had turned 50 only twenty days earlier. “We felt trapped in a dark place with no way out.
A career journalist, Carlen Maddux’s blog is at www.carlenmaddux.com.
All types of Alzheimer’s disease are expensive. Unlike many diseases which are expensive because of treatments and drugs that are at least partially covered for most people’s insurance, Alzheimer’s disease is about the decline of one’s ability to complete daily tasks. People need increasing amounts of support and care as the disease progresses. This type of care is rarely covered by any insurance.
A hallmark of Alzheimer’s care is the determination of how people can complete their activities of daily living (ADLs). There are six basic categories of ADLs: eating, bathing, dressing, toileting, transferring/walking and continence. These are all vital abilities for someone to provide self-care. When these abilities are lost, through either a rapid increase in symptoms or a slower decline, the person must have increased care.
People with good long-term care (LTC) insurance can often receive reimbursement from the policy for in-home caregivers, but most other families are left to their own devices. Since people with EOAD are generally enrolled in an employer’s insurance, or have a policy not intended for “elder care,” they rarely have a rider that would cover this type of long-term care.
Additionally, the person affected by the disease must eventually quit working because the disease makes it impossible to perform his or her job. The spouse often has to cut down to part-time or quit working entirely because of the care needs at home. This spells financial devastation for all but the wealthy.
Our Financial Future Is Horrifying!
A gentleman who chose to remain anonymous because of the stigma of the disease told me about the financial devastation for his family:
Alzheimer’s disease can devastate the most well thought out financial plans. After my diagnosis, I had to retire early, which reduced my income to almost nothing. My wife had to sell off most of our assets, including our home, and use our life savings just to make ends meet. She’d had a part-time job but had to quit that, although she has been able to make some money working from home. Our financial future – and eventually hers alone – looks scary. So there’s a devastating financial cost that comes with EOAD besides what happens emotionally.
There is a cultural stigma around EOAD that I believe stems from fear. Historically, any disease that affects the brain seems harder to understand and digest for those not affected by it.
What people can’t understand, they often fear. With EOAD, there is added fear when the reality that this “old people’s disease” actually affects younger people becomes apparent. People don’t know how to treat their co-worker who can no longer remember the fundamentals of a job that he or she did well for a decade. Worse, the individual who has developed EOAD may forget the names of good friends and even family members. These changes are frightening to comprehend so, to many, it seems easier to ignore them, which translates into avoiding the affected person.
Thankfully, there are breakthroughs in educating the public. Smart television and movie producers are seeing that if they present a dramatic story in an interesting way, the story will draw a crowd. Perhaps the most well known in this area is the movie “Still Alice”. The book came first, as is often the case, but the movie brought EOAD into mainstream consciousness.
Additionally, sports and media elites who develop dementia have become more likely to go public with their disease in the interest of education. When Pat Summitt, famed Lady Vols basketball coach, developed EOAD at age 59, she became a star in the field of AD. People watched her courageous battle with heartbreak but admiration. Summitt died at age 64 but her legacy lives on through the Pat Summitt Foundation.
There are some EOAD caregivers who feel that movies like “Still Alice,” as well as celebrities who are generally wealthy by common standards, harm the cause as much or more than they help. These people feel that the reality of a struggling family who can’t pay the bills and must try to provide care 24-hours a day with no respite is not represented.
I understand their view, and in some ways they are correct. However, getting the message out about EOAD is vital. People aren’t going to watch a movie about the daily care of changing diapers and preparing pureed food. Therefore, some glamor is added to the mass media portrayals. I believe that these projects help overall because awareness is essential, and sometimes that means making compromises to appeal to a skittish audience.
How It Feels to Live with Early Onset Alzheimer’s Disease
The only people who can say what it’s like to live with early onset dementia are those who live with it. Harry Urban is one of those people. He posts often on his Facebook site and has given me permission to use his posts. Here are two recent posts that affected me greatly:
Does it hurt, I’m asked? Does what hurt, I answer back; living with Alzheimer’s, they say. No, there is no pain unless you factor in the emotional pain that is caused to the people that watched me during my decline.
I suffer through the pain in what they feel. I see the grief in their eyes and can’t help feeling the pain because I am causing it. I don’t think living with dementia would be so hard if it did not affect our caregivers the way it does.
I have control over it, I wish they would learn how to also.
When you are caring for someone living with dementia, are you bringing HOPE back into their life or just taking care of their daily needs? Do you talk to them and get to know this new person? You may know the old person very well but unfortunately that person is being left behind and someone new is being born.
We often take for granted we know and understand the person, only to find out that this person we are caring for is so different. The person we knew may have been kind and caring but this person is not.
Something happened and are you trying to figure out what it is. Finding out what the problem is may return a part of the old person you love.
Life expectancy is different for everyone who develops any type of Alzheimer’s. The average life expectancy after diagnosis is eight to 10 years. In some cases, it can be as short as three years or as long as 20 years.
EOAD has no cure. Drugs have so far failed to provide much hope. Some researchers are looking at the very early stages of the disease as a gut problem. Some are digging into how the body uses nutrients. Others are looking at inflammation. We need all of these researchers to continue using skill and imagination until a cure is found.
To offer hope, however, I will offer up two potentially helpful methods to prevent or cure the disease that shouldn’t take a decade or more to prove or disprove themselves.
This is a treatment that delivers a modified virus to a gene in the brain that could erase the damage being done by developing Alzheimer’s before any symptoms become evident. The virus, which is called a lentivirus vector, is already used in gene therapy for other illnesses. Researchers from Imperial College London have shown how using this modified virus to deliver a gene, known as PGC1-alpha, to the brain cells of mice destroys the progression of AD.
Through the combined efforts of the Buck Institute for Research on Aging and UCLA Easton Laboratories for Neurodegenerative Disease Research a lifestyle therapy is being tested for the long-term. In the study, researchers have developed a unique program that has reversed memory loss in some people with EOAD. The program is called metabolic enhancement for neurodegeneration (MEND) and involves a combination of lifestyle changes, brain stimulation, and medication.
There is much work to do before people who are genetically prone to developing EOAD can feel at peace with their future. Funding for Alzheimer’s research is far behind that of cancer and other diseases, yet millions more will be affected. Then there is funding for caregiver support which is sadly lagging. In the long run, increased funding will save not only lives but billions of future dollars. In fact, many feel that the global economy is at risk if more isn’t done. We can hope for all of those coping with EOAD now, or the probability of it in the future, that awareness will begin to bring in those dollars.