Early Onset Alzheimer's

Alzheimer’s disease is a medical condition that many people believe only occurs when you are much older. The unfortunate reality is this disease knows no bounds and can happen at any age, and there may be individuals categorized under the age of 65 whose brains have been affected by early onset Alzheimer’s disease. A person experiencing early onset Alzheimer’s can develop the disease at any of the stages - early, moderate, or severe. The signs and symptoms can be noticed as early as someone in their 30s up to someone in their 60s. The National Institute of Aging reports that early onset Alzheimer’s disease is the rarest form of Alzheimer’s that occurs in less than 10 percent of all people who have Alzheimer’s disease.

The Alzheimer’s Association reports that the majority of individuals with this diagnosis have sporadic Alzheimer’s, which appears to be the most common form and interestingly enough, is not a result of genetics. However, research has also confirmed that genetics continue to play a role in a different form of the disease. Some genes are considered risk genes, which increase the likelihood of early onset Alzheimer’s but do not guarantee it. In addition, there are also genes considered deterministic genes or “familial Alzheimer’s disease” genes, which are known to be a direct link to the disease from a parent or grandparent who developed the disease at a younger age. Regrettably, anyone with the deterministic genes will, at some point, develop this disease. There are three specific genes - the APP, PSEN1, and PSEN2 - that run in family history. If you have a genetic mutation in one of those genes, you have a chance of developing early onset Alzheimer’s disease before the age of 65. Genetic testing is an option for people who know their family history and realize that they are at high-risk for the disease. Being diagnosed with early onset Alzheimer’s disease may entitle you to participate in ongoing research studies. However, this may not be of interest to you, as there are pros and cons to every research study. It is recommended to speak with your primary care physician to explore this option.

The signs and symptoms of early onset Alzheimer’s closely compare to the other forms of the disease. Such early symptoms may include: forgetting important things such as recently informed dates, asking the same questions repeatedly, difficulty with basic problem solving such as handling monthly bills, trouble initiating conversation and finding the right words, misplacing items and being unable to retrace your steps to find it. A person may also become more withdrawn from social events due to their awareness of their deficits and not wanting others to notice. Some later symptoms are also similar to other forms of Alzheimer’s, such as mood and personality changes with an increase in agitative behaviors and paranoia, as well as a more profound confusion to person, time and place. A person may also experience trouble with the physical function of the body as evidenced by difficulty swallowing, speaking, and ambulating because the brain is no longer connecting to how the body works.

Because it occurs under the age of 65, early onset Alzheimer’s is likely to be misdiagnosed, and physicians may typically attribute the signs and symptoms as a result of ongoing stress, depression, menopause, or other lifestyle changes. It is important to advocate for yourself or a family member who believes they are experiencing the signs and symptoms of Alzheimer’s to receive an accurate diagnosis. This will help you rule out any possible medical issues and allow you to take the next steps in obtaining proper treatment. This gives you the ability to process the diagnosis and develop ways that you and your family can respond and cope with the disease properly and with dignity. The disease is often diagnosed after acknowledging a mental decline with observations of the early signs and symptoms. You will be evaluated with a series of cognitive tests assessing your memory and problem solving and judgment skills. You may also have additional testing completed such as imaging tests and lab work. There is no cure for the early onset Alzheimer’s disease, but there are medications and treatments that have been successful for persons with early onset Alzheimer’s in helping them maintain their cognitive function and slow the progression of the disease.

After confirming your diagnosis, you will want to start to plan ahead for your future and your family’s future. Knowing you have early onset Alzheimer’s, it is likely that this disease never crossed your mind as something you would need to deal with while having a career and a young family. Perhaps you have put money aside for your retirement, or college savings account for your children. It is important to prepare yourself for the realities of this disease where you may need to maneuver funds in order to plan accordingly for your future care. You will want to consider getting your legal documents in order, as there will come a time when you may no longer be competent or safe to make your own decisions. Some critical documents include a Power of Attorney. This includes healthcare-related decisions and financial decisions that you appoint someone to make on behalf of yourself. It will likely be a spouse or child, but most importantly, it will be someone who knows and honors your wishes. Another document includes a Living Will, which provides basic to advanced details regarding your medical wishes when you are no longer able to make the decision yourself, such as resuscitation, intubation, and ventilation. In addition, having early onset Alzheimer’s diagnosis may affect your long-term care and life insurance eligibility. It is recommended to speak with an Eldercare attorney to receive clarifying answers to your concerns.

Your life perspective may differ significantly from someone who receives an Alzheimer’s diagnosis when they are in their 90s. Alzheimer’s disease is a difficult and shocking disease for anyone, but it has even more unique challenges when you are diagnosed under the age of 65. It is likely you still have a younger family. It is crucial to be open about your disease, which allows for accurate preparation and expectation for family members. Often, many people refer to Alzheimer’s as an “old person disease” and may have their own misconceptions whereas they may not believe that you honestly have the disease, or they may even question the validity of your diagnosis. For a person with early onset Alzheimer’s, this can be incredibly embarrassing and frustrating and may cause you to withdraw from social events or large family gatherings. A way to counteract the stigma is to educate and empower yourself and your family about your diagnosis and what will be your next steps.

It is essential to take care of your physical and emotional needs as you grapple with this disease. Continue to remain a healthy and active lifestyle as a benefit for your body and as a form of an appropriate coping outlet. If you are still at an early stage in the disease, you are very much aware of your deficits and can explore your feelings related to the incredible losses you are feeling and will continue to experience as time presses forward. Continue to process through your thinking and your emotions. Develop an understanding of how your role as a parent and a spouse is going to change and will likely adapt to the role of patient or caregiver. Continue to engage in enjoyable moments that will provide long-lasting memories for your family. Developing a perspective of recognizing your strengths in faith, family, and mindset can benefit as you begin to understand the significance of this disease.

As a married couple, early onset Alzheimer’s can be devastating when you realize that the idea of “growing old together” is now not how you imagined it would be. There may be feelings of sadness and expected loneliness of what is to come. Continue communicating with one another about your needs and wants. Ask for help and clarity as needed. Activities that you used to enjoy together may no longer have the same appeal, or they may no longer be appropriate for the person with early onset Alzheimer’s. Learn to adapt activities or develop new ones to enjoy together. As the disease progresses, the romantic part of your relationship is likely to differ. It is important to research what this may look like to you and seek counseling or support groups to provide guidance and emotional support as your roles are changing.

As a parent living with early onset Alzheimer’s disease, it can be difficult to imagine your child’s future that you potentially may not be part of it, or the reality of being unable to recall fond memories from your past. Depending on your child’s age, it may be challenging for your children to fully understanding what is going on in their parent’s life. Continue to engage in meaningful activities that you can enjoy together. Make sure your child has a supportive person in their life to voice their questions, concerns, and fears. While you are still at an early stage, preserve a meaningful project for your child such as writing a letter or recording your voice or video, which will provide long-lasting significance to their lives.

If you are still working, receiving this diagnosis will undoubtedly take a turn on your career plans. Depending on your employer, your job may offer disability insurance, or you may have invested in a personal disability policy at a time before your diagnosis. Be sure to have an understanding of your family leave policy and your health care insurance. Review your employee handbook or meet with your benefits coordinator. It is important to review your various policies to understand all your benefits. Educate yourself on all eligible benefits before the time comes when you need to stop working. You may also qualify for early retirement. Explore what may be available to you through Medicare, Medicaid, or Social Security. At some point, there will be a change of income for you and your family. You may need to adjust your budget. Understanding all your benefits will allow you to have a greater picture of your financial future and provide reassurance for your family’s future.

Alzheimer’s disease has ongoing research and fundraising to combat the signs and symptoms of this disease with the ultimate goal to find a cure. Because early onset Alzheimer’s has its unique challenges, it is important to continue the research from all facets of this disease. This will allow you to understand the signs and symptoms and what to expect in subsequent stages of the disease for yourself or your loved one. Finding a support group can provide strength as you explore this new diagnosis with an uncertainty of what’s to be expected. A support group will connect you with other like-minded individuals going through similar experiences. It can provide a forum for open and non-judgmental discussions to aid in alleviating your concerns and fears, or at the least, being comfortable enough to verbalize them. You can gain further understanding of early onset Alzheimer’s and develop ways to adapt as it progresses. Explore resources from the support group and your physician’s recommendations. Resources will vary based on location; reach out to your local Alzheimer’s Association chapter to connect to supportive services. Be sure to keep a handy folder or binder of resources so it can easily be found once the disease continues to progress and questions may arise. Whether you are the person or the loved one of the person receiving the diagnosis of early onset Alzheimer’s disease, you are not alone. Finding the strength to move forward by enhancing your quality of life and knowing you have support will enable you to be prepared for yourself and your family’s future when coping with this devastating disease.

Helpful Early Onset Alzheimer's Resources:

https://www.alz.org/help-support/i-have-alz/younger-onset

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356

https://www.nia.nih.gov/health/early onset-alzheimers-disease-resource-list

https://www.hopkinsmedicine.org/healthlibrary/conditions/adult/nervous_system_disorders/early onset_alzheimer_disease_134,63

About the Author:

Bobbi Jo Curty earned her Bachelor's Degree in Social Work from Eastern University in 2008. Bobbi has 10 years of experience working as a social worker in a continuing care retirement community and has helped many patients with dementia and Alzheimer's disease. She currently works as a Director of Social Services for a retirement community in Manheim, PA and oversees social workers for more than 100 community residents.