What To Expect With Early Onset Alzheimer’s

Mood Or Personality Changes

Someone with Alzheimers disease may start to experience a low mood. They may feel irritable, confused, anxious, or depressed. They may also lose interest in things they used to enjoy.

They may become frustrated with their symptoms or feel unable to understand the changes taking place. This may present as aggression or irritability toward others.

‘what About The Kids’

When he was diagnosed at 36, doctors said he would die within five to seven years. More than a decade later he survives. “Younger people’s bodies are stronger,” says his wife, Karen.

But young-onset Alzheimer’s also progresses faster than the disease in older people. Mike was diagnosed in 2001. By 2004 he was unable to speak and by 2006 he was unable to walk.

An estimated 5.4 million Americans have Alzheimer’s. Early-onset Alzheimer’s disease, commonly known as young-onset Alzheimer’s disease, afflicts people under 65 and accounts for less than 10% of cases of the disease.

In the UK, the Alzheimer’s Society provides statistics on all forms of dementia, noting that Alzheimer’s accounts for the majority of these cases. They count 800,000 people with dementia in the UK, including more than 17,000 younger people.

It is a small proportion, but an extremely aggressive form of the disease. The impact on patients and families is typically severe.

Once diagnosed with Alzheimer’s, younger people have scant time to organise their future. They face a lot of legal work: coping with insurers, arranging for Social Security and power of attorney.

Mike’s first question, when he learned he had Alzheimer’s, was “What are we going to do about the kids?” At the time, Courtney was nine years old and Brandon eight.

At first Mike and Karen decided not to tell them anything, “but they were already questioning why he wasn’t working anymore”, recalls Karen.

Problem Solving Or Planning Difficulties

The person may find that they have difficulty following directions, solving problems, and focusing. For example, they may find it difficult to:

• follow a recipe
• follow directions on a product
• keeping track of monthly bills or expenses

Some people often have problems like these, but if they start to happen when they did not happen before, it could indicate early onset Alzheimers disease.

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Signs And Symptoms Of Alzheimer’s Disease

Alzheimer’s disease is a progressive condition, which means the symptoms develop gradually over many years and eventually become more severe. It affects multiple brain functions.

The first sign of Alzheimer’s disease is usually minor memory problems.

For example, this could be forgetting about recent conversations or events, and forgetting the names of places and objects.

As the condition develops, memory problems become more severe and further symptoms can develop, such as:

• confusion, disorientation and getting lost in familiar places
• difficulty planning or making decisions
• problems with speech and language
• problems moving around without assistance or performing self-care tasks
• personality changes, such as becoming aggressive, demanding and suspicious of others
• hallucinations and delusions
• low mood or anxiety

Read more about the symptoms of Alzheimer’s disease.

Diagnosis Of Early Onset Alzheimer Disease

“The neurologist diagnosed conversion disorder . I should not have believed that. We went to counseling sessions for a year but nothing happened.”Caregiver.

Families with eFAD tell stories of being misdiagnosed because their doctors had ruled out the possibility of AD in people who are so young , or simply did not consider it seriously. “My brother’s first symptoms were personality changes, weight gain, loss of physical coordination, and then short-term memory loss. We thought those signs would be enough for him to be diagnosed correctly given that his mother and uncle also had had early onset AD. But still it took nearly two years of neurological assessments before the doctors would give my brother his diagnosis,” an unaffected sibling said. Ironically, AD specialists say that provided the doctor is attuned to AD occurring in younger people, diagnosing eFAD can actually be easier than diagnosing LOAD. Elderly patients are more likely to have other medical conditions that can cause dementia, making diagnosis trickier. For example, cardiovascular disease and diabetes are very common in older people, and can cause symptoms that overlap with AD. In younger patients, this is less likely to be the case. A main challenge in diagnosing eFAD is to distinguish it from other types of dementia that begin in middle age, for example, frontotemporal dementias such as Pick disease.

Examining for the presence of AD symptoms Ruling out other possible causes of dementia

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Difficulty Completing Familiar Tasks

Some people may experience a greater problem with concentration. Routine day-to-day tasks requiring critical thought may take longer as the disease progresses.

The ability to drive safely may also be called into question. If you or a loved one gets lost while driving a commonly traveled route, this may be a symptom of AD.

Take Care Of Yourself

Your help is really important to your loved one’s quality of life. But it’s a lot to take on. You’ll probably feel anxious, depressed, and even angry sometimes. A person with dementia often needs long hours of care and a lot of monitoring, which can make you feel exhausted and overwhelmed. It’s OK to feel this way. Many caregivers do.

Don’t forget to take care of yourself. Here are some tips to relieve your stress:

• Be realistic. Accept that you can’t do it all alone and that it’s OK to ask for help or say yes when someone offers. It’s also fine to say no.
• Don’t quit your job until your loved one has a definitive diagnosis and you’ve fully explored any employee benefits. This helps keep income flowing and relieves stress about lack of funds, at least temporarily. Talk to your boss about flex options, like telecommuting.
• Stay informed. Learn all you can about early-onset dementia and how it can affect your family’s life. You’ll be better prepared for future changes.
• Talk to others. Get support from family and close friends. Don’t keep your feelings bottled up inside. Sharing your emotions and journey can be helpful. Caregiver support groups are available and may be a safe place for you to discuss your feelings and unwind.
• Walk it off. Exercise is a great stress reliever. It will help you sleep better, think better, and have more energy.

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Difficulties In Thinking Things Through And Planning

A person may get confused more easily and find it harder to plan, make complex decisions or solve problems.

Confusion About Location And Time

The person may experience confusion about places or times. They may have difficulty keeping track of seasons, months, or times of day.

They may become confused in an unfamiliar place. As Alzheimers disease progresses, they may feel confused in familiar places or wonder how they got there. They may also start to wander and get lost.

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Late Stages Of Alzheimers Disease Symptoms

The needs of the person with Alzheimers become much more demanding as the disease progresses. In the late stages of Alzheimers, the person with the disease loses the ability to respond appropriately and is unable to converse with others. They will also develop an inability to control movements like sitting, standing and walking.

Here are some other common symptoms of the disease that can occur:

• Catches colds and infections easily
• Day/night reversal of sleep pattern
• Difficulty communicating
• Difficulty using the toilet independently
• Eventually requires help with activities of daily living, 24 hours per day
• Eventually unable to walk
• Hoarding, rummaging
• Inability to sit and eventually to swallow
• Incontinence
• Loss of awareness of surroundings
• Needs help walking
• Needs progressively more help with personal care
• Personality changes such as aggression, anxiety, hostility, irritability or uncooperativeness
• Repetitive questioning
• Sundowners
• Verbally aggressive or demanding behavior
• Wandering

Difficulty Determining Time Or Place

Losing track of dates and misunderstanding the passage of time as it occurs are also two common symptoms. Planning for future events can become difficult since they arent immediately occurring.

As symptoms progress, people with AD can become increasingly forgetful about where they are, how they got there, or why theyre there.

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Consider A Clinical Trial

Since patients with early-onset can live with the disease for a long time, it might make sense to explore the option of entering a clinical trial. According to the Alzheimers Association, funding is not the biggest challenge for clinical researchers. Instead, finding trial participants is! If you or a loved one might be willing to take part in a clinical research study, contact the Alzheimers Association at 272-3900 and press 1 to be connected with the clinical trials hotline.

How Do I Treat Early

An important part of managing your condition is to stay as positive as you can. Keep up with the activities you still enjoy. Try different ways to relax, like yoga or deep breathing.

Keep your body in good shape, too. Make sure you eat healthy food and get regular exercise.

Medications can help with some symptoms of early-onset Alzheimer’s. Your doctor may prescribe drugs to help with memory loss, such as:

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End Stage Of Dementia

The end stage of dementia is the most difficult stage for those suffering from the disease, and also for family members, caregivers, and healthcare professionals. Victims lose what is left of their intellectual and physical capabilities and become completely dependent on others. The model is still shifting in considering end stage dementia an end of life condition experts are pushing this model in order to advocate for better pain and distress management for those suffering at their end.

What Causes Alzheimer’s Disease To Progress So Quickly

The progression of Alzheimers disease varies widely between individuals, with most people living with the condition for between 3 and 11 years after the initial diagnosis. In some cases, people may survive for more than 20 years. When Alzheimers is detected early, there are possible treatments that can help to slow the progression of the disease and contribute to a longer life expectancy.

It is therefore crucial to plan for the future and follow the progression of the disease through each stage. Alzheimers disease first begins with physical changes in the brain. This can happen at a gradual pace before any noticeable symptoms appear. In fact, this pre-clinical Alzheimers disease stage can begin 10 to 15 years before any symptoms appear.

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Financial Planning After An Early

When you or a loved ones world is rocked from an early-onset Alzheimers diagnosis, its normal to feel sad, angry and paralyzed with fear. Things like financial planning typically get shoved to the back burner because theyre simply too painful to think about.

As challenging as it is, the reality is that an Alzheimers diagnosis comes with a high price tag. Plus, its better to begin planning while your loved one with a diagnosis is in an early stage and more likely to be able to participate in the decision-making process.

So, where to start? One obvious place to begin is with a familys source of income. People with early-onset Alzheimers are often forced to modify their employment availability and as a result, they may even lose their job. How can families cope with income loss? Covering living expenses as well as the price of medical treatment can cause a strain on the family budget. Following a heart-to-heart conversation with loved ones, many families choose to seek advice from a financial advisor.

Youll want to organize, review important documents, and create a realistic budget. Explore options for government programs along with insurance coverage, and consider if any low-cost or free community services are available. In addition to a financial advisor, you may want to seek advice from an attorney who specializes in elder law. An attorney can help you deal with matters like estate planning and key legal documents.

Resources

Supporting Someone With Early

The first step in offering support to a relative with Early-Onset Alzheimers is to get an accurate diagnosis as early as possible. A proper diagnosis will help your loved one in numerous ways. For one thing,it can rule out other possible causes. Just as important, the diagnosis paves the way for the right sort of treatment.In addition, the diagnosis enables you and other family members to provide the right kind of compassion and support. Plus, the earlier the diagnosis is reached, the more time you will have to address not only health-related issues, but legal, financial and personal ones as well.

If your loved one is still in the workplace, you can help them cope with how they will handle their job. People dealing with early-onset Alzheimers may also have to cope with the judgments of their employer as well as their co-workers. They may need to switch jobs or face the prospect of an early retirement and may need to learn how to live with fewer financial resources.Youll want to become familiar with your relatives benefits, including any employer-sponsored assistance programs. Also look into the American with Disabilities Act along with other government options like COBRA or the Family and Medical Leave Act.You may also need to think beyond the needs of your loved one. For example, their spouse or partners life might transition to a caretaking role.

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Signs Of Mild Alzheimers Disease

In mild Alzheimers disease, a person may seem to be healthy but has more and more trouble making sense of the world around him or her. The realization that something is wrong often comes gradually to the person and his or her family. Problems can include:

• Memory loss
• Poor judgment leading to bad decisions
• Loss of spontaneity and sense of initiative
• Taking longer to complete normal daily tasks
• Repeating questions

• Increased sleeping
• Loss of bowel and bladder control

A common cause of death for people with Alzheimers disease is aspiration pneumonia. This type of pneumonia develops when a person cannot swallow properly and takes food or liquids into the lungs instead of air.

There is currently no cure for Alzheimers, though there are medicines that can treat the symptoms of the disease.

How Alzheimer’s Disease Is Treated

There’s currently no cure for Alzheimer’s disease, but medicines are available that can help relieve some of the symptoms.

Various other types of support are also available to help people with Alzheimer’s live as independently as possible, such as making changes to your home environment so it’s easier to move around and remember daily tasks.

Psychological treatments such as cognitive stimulation therapy may also be offered to help support your memory, problem solving skills and language ability.

Read more about treating Alzheimer’s disease.

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Going To War: Battle Mode

So I am in full battle mode versus the disease. I am maxing out on diet, exercise, brain engagement, and sleep. I will never surrender.

Diet is critical. I believe food has pharmacological properties. You are what you eat. I am following the Mediterranean diet. Predominantly plant-based and trying to avoid processed foods. Think eating closer to the vine. Great for health, especially brain health, and keeps inflammation down.

Exercise is another critical part. I exercise from 30 minutes to 6 hours a day with 1 off day per week with my Ironman training. Movement is medicine.

Sleep is also a major cornerstone. It is the wash cycle for our brain. Try to get 8 hours a night. Not easy, but that is the goal. Best to unplug from devices the earlier in the evening, the better.

Brain engagement. The mind is a muscle. Use it or lose it. I start my day but doing the New York Times spelling bee and Soduku. I also take Spanish lessons every day using Duolingo. Not fluent at all but enjoy the process. The best app I have found is BrainHQ, which has a wide variety of highly challenging mental tasks. Also, when COVID-19 clears, I will go back to yoga and tai-chi.

Difficulty Completing Everyday Tasks

The person may have difficulty completing an otherwise familiar task. For example, they may find it hard to:

• get to a grocery store, restaurant, or place of employment
• follow the rules of a familiar game
• prepare a simple meal

Sometimes, people need help with new or unfamiliar things as they get older, such as the settings on a new phone. However, this does not necessarily indicate a problem.

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Early Onset Alzheimers Disease

We typically view Alzheimers disease and other forms of dementia as a condition affecting older people. This is generally true. According to the Alzheimers Association, of the over 5 million people in the United States affected by Alzheimers disease, about 95% are 65 years and older. But this means that nearly 5% of people with Alzheimers are diagnosed at a younger age, in their 50s, 40s and, sometimes, even in their 30s.

This is known as younger- or early-onset Alzheimers disease and it affects about 200,000 people in the United States. Early-onset Alzheimers can be difficult to diagnose as doctors usually do not expect to find Alzheimers in younger patients. Also, while the memory loss associated with dementia might appear as an early symptom, people with early-onset Alzheimers may more often experience difficulty with speech, reasoning and visual processing at the outset. With younger patients, these symptoms could be dismissed as responses to stress or overwork.

Scientists are still uncertain what causes Alzheimers disease, but early-onset Alzheimers could be influenced by genetics. Certain gene mutations that can be passed down in families may be responsible for triggering overproduction of proteins that lead to the formation of plaques that are linked with Alzheimers. But these mutations account for only a fraction of early-onset Alzheimers patients and the exact causes for the majority of cases have yet to be identified.