What Caregivers Should Know About Early-Onset Alzheimer’s

Symptoms, Stigma, Diagnosis, and Treatment

Early-onset Alzheimer’s disease, also known as younger-onset, is the development of Alzheimer’s symptoms between the ages of 30 and 65. A diagnosis is relatively rare at a younger age, and while over 6 million people in the United States are living with Alzheimer’s disease, the true prevalence of early-onset is uncertain.

Challengingly, there is no definitive test for Alzheimer’s disease, and health professionals may have conflicting opinions when diagnosing your loved one. This uncertainty in diagnosis is only increased with younger individuals, as it can be easy to dismiss early symptoms as being stress-related or due to other health conditions, which often overlooks the severity of the cognitive changes taking place. 

If you recognize significant changes in your loved one’s behavior, especially if they have higher risk factors, like family history and heredity for developing the disease, it’s crucial to take an active role in advocating for proper testing. Read on to learn about the factors linked to early-onset Alzheimer’s disease, potential symptoms, condition diagnosis and treatment, and how to cope with the stigma surrounding the illness.

Factors Linked to Early-Onset Alzheimer’s Disease

Because of the rarity and frequent misdiagnosis of early-onset Alzheimer’s, doctors have not been able to pinpoint the cause of many of these cases. However, scientists have found several rare genes that directly cause Alzheimer’s disease, and people with these genes are more likely to develop the disease in their younger years.

Development of the disease can also be linked to familial genetics. Research has shown that people with a parent or sibling with Alzheimer’s are more likely to develop the disease than those with more distant relatives with the disease. Genetic testing can be done to determine a person’s risk level for developing Alzheimer’s disease, but your loved one may want to consider seeing a genetic counselor before pursuing the option.

Signs and Symptoms of Early-Onset Alzheimer’s Disease

Symptoms of early-onset Alzheimer’s do not differ from other forms of the disease. Each person’s experience with the disease is unique, but there are some Alzheimer’s symptoms that commonly appear first:

• Short-term memory changes.

Memory loss and forgetfulness are some of the first signs that many people notice in their loved ones. However, initial memory loss may be difficult to notice and is often only recognized alongside other symptoms.

• Confusion.

Many Alzheimer’s patients report experiencing an unsettling feeling of confusion at certain times. They may not be able to come up with the right words to describe something, have trouble with decision-making, or be confused by things previously familiar to them.

• Unexpected mood swings.

Changes in mood occur with a variety of conditions, including depression. If your loved one has a noticeable change in mood or personality without an obvious cause, it may be worth a follow-up with their healthcare provider.

• Difficulty maintaining focus.

Early-onset Alzheimer’s disease can make it difficult to maintain focus and attention for extended periods of time. An example might be the inability to finish playing a board game such as chess or checkers.

Many other signs could allude to early-onset Alzheimer’s disease, and everyone’s experience with the disease is unique in its challenges and symptoms. And, while early-onset Alzheimer’s is less common than other forms of the disease, it’s important to pay attention to any changes in your loved one and seek medical attention if you’re concerned.

Since younger-onset Alzheimer’s is a challenging diagnosis, it is commonly a frustrating experience for you and your loved one to get an accurate diagnosis as you may need to seek out medical advice from multiple providers. Through cognitive tests, brain imaging, and other diagnostic methods, your loved one’s doctors will be able to rule out other possible conditions and find the right diagnosis.

Empathy for the Feelings That May Follow an Alzheimer’s Diagnosis

It’s common for people experiencing Alzheimer’s symptoms to delay seeking medical advice and many put off planning in advance of the disease progression due to a sense of shame or fear that prevents them from acknowledging how their cognitive function will change. Yes, you and your loved one will likely be overwhelmed with emotions after diagnosis, such as feelings of grief for the life they once envisioned for themselves. But, as their caregiver, you can help them figure out how to navigate these feelings.

First, one of the greatest concerns for people diagnosed with Alzheimer’s disease is the stigma – or negative labels – that may lead to family or friends withdrawing from their lives, dismissing their symptoms as typical aging, or avoiding any discussion of the condition altogether. Even though most people are familiar with the disease, many harbor harmful misconceptions about what a diagnosis really means. Not only does this stigma result in people living with Alzheimer’s feeling misunderstood, but it may contribute to a lower quality of life and a faster progression of symptoms.

“A common misconception about Alzheimer’s is that people with the disease can’t maintain a good quality of life, so many people fear and avoid coming to acceptance with their diagnosis,” said Sharon Picard, RN Care Manager at Careforth. “With early-onset Alzheimer’s especially, it’s critical to break down this stigma and minimize these anxieties, as early diagnosis and treatments is one of the best courses of treatment for those with the disease.”

Treatment of Early-onset Alzheimer’s Disease

As with all forms of Alzheimer’s disease and other dementias, a cure has not yet been discovered. Despite this, the goal, particularly with early-onset Alzheimer’s, is to maintain mental and physical functioning for as long as possible. Therefore, it will be crucial to work with your loved one’s healthcare team to determine the right medications, health and wellness routines, and cognitive training and exercises that can be used to manage specific symptoms.

Like everyone’s experience with the disease, every treatment plan for Alzheimer’s is unique. A few examples of beneficial activities, mental exercises, and routines include:

• Keep an active lifestyle with daily exercise, outdoors if possible.
• Maintain daily routines as much as possible.
• Make social interactions a priority.
• Keep a schedule.
• Participate in your loved one’s favorite hobbies, arts and crafts, or music.
• Keep active conversations with your loved one and reflect on fond memories.

Life with Alzheimer’s can still be very full and rewarding, especially with support from friends and loved ones, healthcare providers, and family caregivers. And with a timely diagnosis, early-onset Alzheimer’s disease can be managed in a way that maximizes your loved one’s quality of life and lets them have an active role in planning their future and health plan.

It’s important to remember that you are not alone in your caregiving journey and in navigating the stages of Alzheimer’s disease progression, and we at Careforth are here to help you feel supported at every turn. Contact us to learn more about how Careforth supports caregivers.