What to do if you have a family history of dementia before age 65
Last Updated: Nov 2 2024
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This article contains sensitive health information. Reader discretion is advised. Familial early onset dementia is rare, but some readers will be directly impacted by this information.
If you or a loved one has been identified as having a mutation in one of the three genes - APP, PSEN1, or PSEN2 - that are linked to early-onset Alzheimer’s disease, it’s understandable to feel concerned.
These mutations can significantly increase your risk of developing Alzheimer’s disease before the age of 65.
However, there are other reasons for early-onset dementia outside genetics; including strokes, excessive alcohol, and head trauma.
This article is intended for those with genetic early-onset dementia (known as Familial Alzheimer’s Disease).
While this is a challenging reality, there are steps you can take now to prepare, plan, and live well, knowing your risk.
Here are 5 key actions you can take to prepare for the future.
Read on to plan ahead for your future.
1. Get Informed and Seek Support
Understand your mutation:
Mutations in the APP, PSEN1, or PSEN2 genes are linked to a form of Alzheimer’s known as Familial Alzheimer’s Disease (FAD).
This type of dementia is rare - only about 1% of all dementia cases, and only 10% of those with early onset disease.
It tends to run in families where 3 or more people have had symptoms of Alzheimer’s dementia (memory problems) before the age of 65.
The genes alter the normal amyloid-beta (Aβ) protein production and clearance, meaning that your brain balance is skewed heavily to the side of damage from an earlier age, regardless of lifestyle habits.
If you have a mutation in one of these genes, your risk of developing the disease is significantly higher, but the exact age of onset can vary.
Talk to a genetic counselor:
If you have 3 immediate family members (i.e. a parent or sibling) with early-onset dementia before the age of 65, across at least 2 generations, you may wish to ask your doctor for genetic testing.
This will generally require a referral to a genetic specialist, but this may vary depending on where you live.
Seeking help to understand your genetic test results and what they mean for your future is an important first step. A genetic counselor can help clarify your risk and what options you may have for future planning.
REMEMBER: there are other reasons for early-onset dementia outside genetics; including strokes, excessive alcohol, and head trauma.
Talking to a genetic counsellor can help you understand your unique genetics.
2. Build a Comprehensive Health Plan
Focus on overall brain health:
While having a mutation increases your risk, adopting a brain-healthy lifestyle can still be beneficial.
Prioritize regular physical activity, a nutritious diet, and keeping your brain engaged with activities that stimulate your mind, like learning new skills or hobbies. Explore Aldora’s articles on prevention to see which strategies resonate with you most.
Stay on top of heart health:
Cardiovascular health is deeply linked to brain health. Managing conditions like high blood pressure, cholesterol, and diabetes can help reduce cognitive decline.
Stay socially connected:
Regular social interaction has been shown to help protect against cognitive decline. Stay active in your community and maintain relationships with family and friends.
Continue to live life healthily - across brain, heart, and emotions. Learn more with aldora or other resources for brain health.
3. Plan for the Future
Create a legal and financial plan early:
Given the possibility of early-onset Alzheimer’s, it’s important to plan ahead.
Work with an attorney to establish legal documents like a power of attorney, living will, and advanced healthcare directives while you are still cognitively healthy. This will ensure your wishes are followed and reduce the burden on your loved ones in the future.
Financial planning:
Early-onset Alzheimer’s can have a significant financial impact, particularly if you need to leave work earlier than expected.
Meeting with a financial planner can help you make arrangements to secure your future, including preparing for long-term care, healthcare costs, and living expenses.
Build your team: a lawyer for healthcare matters and a financial advisor. You can often find advisors that provide guidance on a one-time basis, which can be more affordable than ongoing advice.
4. Consider Clinical Trials and Research Opportunities
Explore clinical trials:
There are numerous clinical trials investigating new treatments for Alzheimer’s, especially for individuals with genetic mutations like APP, PSEN1, and PSEN2.
Participating in a trial could provide early access to new therapies and contribute to research aimed at understanding and treating familial Alzheimer’s disease.
Use the Alzheimer’s Association TrialMatch (found here) to find a study that might be right for you.
Stay connected with research updates:
Scientists are learning more about Alzheimer's disease every day. Staying informed about the latest research might open up new possibilities for treatment or prevention in the future.
As an Aldora member, we’ll keep you updated of major breakthroughs in dementia science.
Discoveries are made every day. Never lose hope that a cure will be found.
5. Focus on Living Well, Today
While it’s important to plan for the future, don’t let the fear of Alzheimer’s define your life. Focus on the present and the things that bring you joy and fulfillment.
Whether through support groups, friends, or family, having people around you who understand your journey can also make a big difference.
If you need help processing your feelings or managing stress, consider speaking with a therapist who has experience in supporting individuals with genetic conditions.
Life exists in this moment, right here, right now.
Final Thoughts
Knowing you carry a genetic mutation that increases your risk for Alzheimer’s is not easy.
However, you are not alone, and there are many proactive steps you can take now to manage your health, plan for the future, and ensure you live a fulfilling life.
By staying informed, building a strong support system, and taking charge of your health, you can prepare for the future while also making the most of today.
Remember, while the risk is real, it does not define your entire life. Focus on what you can control and live each day with intention.
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