You Have Early Onset Alzheimer’s. Now What?

Most people think Alzheimer's happens to someone else, usually the elderly. Early-onset Alzheimer's disease is becoming more common, afflicting those in their 30s, 40s, and 50s. The stories can make you cry. Preparing for long-term health care before your health changes is key to retirement planning.

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You Have Early Onset Alzheimer’s. Now What?
5 Min Read July 12th, 2015 Updated:February 2nd, 2024

When Alzheimer's disease comes to mind, images of celebrities like former President Ronald Reagan or singer Tony Bennett often appear. While their public struggles raise awareness, Alzheimer's is far more than a disease affecting famous figures. It's a personal battle for millions of families across the nation.


Beyond Celebrity Narratives


Celebrity diagnoses shed light on the disease, but the true impact of Alzheimer's lies in its pervasiveness. It touches lives across all socioeconomic backgrounds, affecting spouses, parents, colleagues, friends, and neighbors.


Not Just a Senior Disease


The misconception that Alzheimer's solely affects older adults persists. According to the Mayo Clinic, early-onset Alzheimer's, striking individuals under 65, is more common than many realize. Many patients are in their 40s and 50s, juggling careers, raising families, and acting as caregivers when the disease strikes.


Early Onset, Significant Impact


While early-onset cases comprise only about 5-6% of all Alzheimer's diagnoses, the impact is undeniable. Imagine yourself or a loved one facing this reality. Are you financially prepared for years of long-term care? Unfortunately, health insurance coverage for such care is limited, often leaving individuals and families to shoulder the burden.


Financial Planning and Uncertainty


The long-term care costs associated with Alzheimer's can be astronomical. Without proper planning, families, often daughters, are thrust into the role of caregivers, facing significant financial and emotional strain. Early planning, while crucial for aging populations, becomes even more critical when confronting the possibility of early-onset Alzheimer's.


Long-term care costs continue to increase for both in-home care services and facilities, including memory care. The costs vary depending on where you live.


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Facing the Unexpected


Accidents and illnesses can occur at any age, and long-term care needs extend beyond traditional senior populations. The stark reality is that many individuals under 65 find themselves grappling with the immense costs and challenges of long-term care due to Alzheimer's or other debilitating conditions.


Confronting the Diagnosis


Imagining a conversation with your doctor revealing an Alzheimer's diagnosis is understandably daunting. Without long-term care insurance, the financial burden falls squarely on you and your family, potentially triggering a crisis situation.


Beyond Awareness, Towards Solutions


While celebrity cases raise awareness, the true fight against Alzheimer's lies in supporting the countless families navigating this disease daily. The focus should shift beyond awareness campaigns to providing accessible resources, financial planning tools, and robust long-term care options for individuals and families facing this challenging reality.


What if your doctor told you"You have Alzheimer's"? 


This possibility became all too real for Nancy Johnson, then a physical therapist, spouse, and parent. On July 17, 2013, a single sentence from her doctor changed her life forever:


With extensive amyloid plaques on your brain, along with the results of the neuro-psychology testing, it is clear you have early-onset Alzheimer's disease.

Read her story - One Sentence Changed My Life: 'You Have Early-Onset Alzheimer's'.

Two Types

John Hopkins Medicine says that the types of early-onset Alzheimer disease are the same, with a few small distinctions:

  • Common Alzheimer disease - Most people with early-onset Alzheimer's disease have the standard form of the disease that progresses in approximately the same way it does in older people.
  • Genetic (familial) Alzheimer's disease - A very rare form where the person has genes that directly contribute to Alzheimer's disease. Symptoms start showing as young as your 30s, 40s, or 50s. 

The Indiana University School of Medicine says people with early-onset Alzheimer's start with symptom presentation differently than those with late-onset Alzheimer's disease. 

Symptoms Can Be Different than Older Age Alzheimer's

Many individuals with early-onset Alzheimer's don't have significant memory loss initially, which is usually the classic hallmark of Alzheimer's. Instead of starting with being forgetful, many people with early on-set have visual symptoms like impaired depth perception or inability to recognize faces – or impaired speech and difficulty coming up with words in conversation.

Early-onset Alzheimer's disease also progresses much faster than late-onset. A recent study showed that early-onset Alzheimer's was being diagnosed much more often than previously thought; however, the appropriate care after diagnosis is lacking.

Those who have early on-set Alzheimer's lack age-appropriate care and have difficulty finding placement in adult care facilities, despite the hardship placed on families caring for individuals with early-onset dementia, according to

People who suffer from this disease at younger ages are in the middle of their careers, have younger families, and were leading active lives until the symptoms started showing. The problem is that few medical treatment options are available for anyone with early-onset Alzheimer's, and the long-term health care required is costly.

Few of these people have Long-Term Care Insurance, and most people who purchase these policies do so in their 50s. You cannot purchase Long-Term Care Insurance if you already have any form of dementia or other serious health issues. 

The Shifting Landscape: Stages of Alzheimer's Care and Support

Alzheimer's disease, a progressive neurodegenerative condition, brings about a gradual decline in cognitive abilities, impacting memory, thinking, and behavior. As the disease progresses, so too do the care needs of individuals living with it. Understanding the different stages of Alzheimer's care and what to expect can help families prepare and make informed decisions.


  • Early Stage

In the early stages, individuals may experience mild memory lapses, difficulty following conversations, or challenges with planning and organization. Daily life remains relatively independent, but assistance with medication management, bill paying, and complex tasks may be needed. Support groups, cognitive stimulation activities, and educational resources can empower individuals and caregivers during this stage.

  • Middle Stage

As the disease progresses, memory loss becomes more significant, and confusion may set in. Individuals may require help with personal care, including bathing, dressing, and eating. Wandering becomes a concern, and safety measures need to be implemented. Daycare programs, home care services, and medication reminders can provide valuable support during this phase.

  • Late Stage

In the late stage, dependence on others becomes nearly complete. Communication becomes limited, and individuals may no longer recognize loved ones. Physical changes like swallowing difficulties or incontinence may occur. 24/7 care is often necessary, provided by family members, in-home caregivers, or skilled nursing facilities. Palliative care can help manage symptoms and ensure comfort during this phase.

  • Adapting and Evolving

It's important to remember that Alzheimer's care is not a linear progression. Each individual experiences the disease differently, and the pace of decline can vary. Care needs may fluctuate, requiring adjustments in support systems and services. Flexibility, emotional resilience, and open communication are crucial for caregivers throughout this journey.

  • Seeking Support

Navigating the ever-changing landscape of Alzheimer's care can be overwhelming. Numerous resources are available to help families cope and make informed decisions. Support groups, counseling services, and educational programs offered by organizations like the Alzheimer's Association can provide invaluable guidance and connection.


Remembering that Alzheimer's care is a journey, not a destination, empowers families to adapt, seek support, and create a loving and supportive environment for their loved ones through each stage of the disease.

Health Changes Often Without Warning. Are You Ready?

The fact is our health can change with little or no notice. It could be from an accident, an illness, or, if we are lucky, we decline due to old age. Most of us will need some help with daily living activities at some point in our lifetime. About half of us will need enough care where we become dependent on other people.

Are you and your family prepared for changes in health and the need for long-term health care? When your doctor tells you will you and your family be ready?

You cannot prevent aging and declining health. You can safeguard your income and assets and plan to be less dependent on those you love. That means adding a Long-Term Care Insurance policy to your retirement plan.

Be sure to seek expert advice from a Long-Term Care Insurance specialist to help match your age, health, and family history with the best coverage at the best value.

Take advantage of your good health today to give you and your family peace of mind tomorrow.

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About the Author

An LTC News author focusing on long-term care and aging.

LTC News Contributor James Kelly

James Kelly

Contributor since August 21st, 2017

Editor's Note

Ignoring long-term care and how your future need for care would impact those you love will place a tremendous burden on them and a financial burden on you. Many people think they will never need long-term care, yet many of us do, and families go into 'crisis mode' when dealing with their parent's lack of planning.

Long-Term Care Insurance has become a vital part of retirement planning to protect income and assets from the growing cost of long-term health care service and ease the stress and burdens placed on our families - usually our adult children.

The ideal time to obtain coverage is in your 40s or 50s, but depending on your health, affordable options exist in your 60s and beyond. Seek help from a qualified Long-Term Care Insurance specialist who represents all the top-rated insurance companies to help you shop and find affordable options based on your age and health. A specialist will show you accurate quotes from all the top companies to help you shop easily for the most affordable options. 

LTC NEWS Caregiver Directory: Your Resource for Finding Quality Care Provider

Don't let the stress of finding high-quality long-term care services for a loved one make life difficult for you.

The LTC NEWS Caregiver Directory provides necessary assistance by enabling you to browse through more than 80,000 care providers. This free, extensive national database covers a broad spectrum of long-term care services, making locating qualified caregivers or suitable care facilities easier. You have the convenience of searching for providers in your or your loved one's area while learning about their qualifications and available services.

For those with an LTC policy, LTC NEWS can help process claims from any Long-Term Care Insurance policy. LTC NEWS, in partnership with Amada Senior Care, a nationally recognized in-home health care agency, ensures that you and your loved ones receive the quality care you deserve. This service comes at no cost or obligation - Filing a Long-Term Care Insurance Claim.

These four LTC NEWS guides will assist you in trying to find appropriate long-term services for a loved one:

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