Early onset dementia, also known as young-onset dementia (YOD), is a tragic diagnosis that affects individuals under the age of 65. Being diagnosed with early-onset dementia is going to be a life-altering experience, not only for the person affected but also for their family and friends.
This article aims to provide guidance on how to navigate this difficult journey and what steps to take after receiving such a diagnosis.
What is Early Onset Dementia?
Early onset dementia, also known as young-onset dementia (YOD), refers to various forms of dementia that occur in people younger than 65, which manifests through behavioral changes, psychiatric, and cognitive decline.
While dementia is usually associated with older adults, it can affect younger individuals as well, sometimes even those in their 30s, 40s, and 50s. This can be particularly challenging as it often occurs during a person's prime working years and when they may have young families.
The most common type of early-onset dementia is Alzheimer's disease, accounting for approximately 60-70% of all dementia cases. However, other forms include:
Vascular Dementia — This type is caused by reduced blood flow to the brain, often due to a series of small strokes. Symptoms can vary but often include problems with planning, decision-making, and slowed thinking.
Frontotemporal Dementia — This less common form of dementia primarily affects the frontal and temporal lobes of the brain. It often begins with changes in personality, behavior, and language rather than memory problems.
Dementia with Lewy Bodies — This type is characterized by the presence of abnormal protein deposits (Lewy bodies) in the brain. Symptoms can include visual hallucinations, fluctuations in alertness, and movement problems similar to Parkinson's disease.
Factors Contributing to Young-Onset Dementia
While the exact causes of early-onset dementia are not always clear, several factors may contribute to its development:
Genetic — Some forms of early-onset dementia, particularly early-onset Alzheimer's disease, have a strong genetic component. Certain genes that directly influence the development of the disease have been identified.
Cardiovascular health — Risk factors such as high blood pressure, diabetes, and obesity can increase the risk of vascular dementia and may contribute to other forms of dementia as well.
Lifestyle factors — Smoking, excessive alcohol consumption, and physical inactivity have been linked to an increased risk of dementia.
Head injuries — Repeated brain injuries, such as those experienced by some athletes or military personnel, can lead to chronic traumatic encephalopathy, a form of dementia.
Chronic health conditions — Certain long-term health conditions may raise the risk of early dementia. Scientists suggest a link between diseases like multiple sclerosis, which damage the brain's protective nerve coating, and Alzheimer's. They believe viruses may contribute to this damage, with effects varying based on genetics.
Environmental factors — While less well-understood, exposure to certain toxins or environmental pollutants may play a role in some cases of early-onset dementia.
What to Expect When You or a Loved One is Diagnosed with Early Onset Dementia
Being diagnosed with early onset dementia can be overwhelming. It's important to understand that while there is currently no cure, there are ways to manage symptoms and improve quality of life.
Here's what you might expect:
Emotional impact — You may experience shock, anger, depression, or anxiety. These feelings are normal. Seeking emotional support through counseling or support groups is crucial.
Lifestyle changes — Expect adjustments to daily routines, work situations, and future plans. This may include early retirement, modifying home environments for safety, and reassessing financial plans.
Treatment options:
Medications like cholinesterase inhibitors or memantine to manage cognitive symptoms
Antidepressants or anti-anxiety medications if needed
Non-pharmacological interventions such as cognitive stimulation therapy
Lifestyle modifications including regular exercise, a brain-healthy diet, and social engagement
Progressive nature — Symptoms typically worsen over time, but the rate varies between individuals and dementia types. Prompt medical checkups and tegular medical follow-ups are essential to monitor progression and adjust treatment plans.
Impact on relationships — Roles within families may shift. Open communication, education about the condition, and involving loved ones in care planning can help maintain strong connections.
Legal and financial planning — It's important to address issues like power of attorney, advance directives, and long-term care plans while cognitive abilities allow.
Support services — Explore local resources for home care, respite services, and day programs designed for younger individuals with dementia.
What to Do if You Suspect Dementia in a Family Member?
If you notice signs of dementia in a family member, such as memory loss, difficulty with problem-solving, or changes in mood and behavior, it's important to take action:
Document concerns — Keep a record of the symptoms you've observed, including when they started and how they've progressed.
Encourage a medical evaluation — Gently suggest your family member see a neurologist for a thorough assessment. Early diagnosis can lead to better management of the condition.
Accompany them to appointments — Offer to go with them to medical appointments. You can provide additional information to the doctor and help remember important details.
Be supportive — Approach the situation with empathy and understanding. Remember that the person may be feeling scared or confused.
Consider genetic testing — If there's a family history of early onset dementia, genetic testing might be recommended to evaluate risk for other family members.
Schedule an Appointment with a Neurologist
If you or a loved one are experiencing symptoms that could indicate early-onset dementia, it's crucial to schedule an appointment with a neurologist as soon as possible. Early diagnosis and intervention can significantly impact the course of the disease and quality of life.
If you or your loved one is in Arizona, Neurology Associates Neuroscience Center, with locations in Chandler and Mesa, offers expert neurological care. Our team of experienced neurologists specializes in diagnosing and treating a wide range of neurological conditions, including early-onset dementia.
Understanding the importance of accessibility and convenience, we also offer telehealth appointments! This option can be particularly beneficial for initial consultations or follow-up appointments, allowing you to receive expert care from the comfort of your home.