THE UNIQUE CHALLENGES OF EARLY ONSET ALZHEIMERS

Alzheimer’s disease is considered to be younger-onset Alzheimer’s if it affects a person under 65. Younger-onset can also be referred to as early-onset Alzheimer’s.

Doctors do not understand why most cases of younger-onset Alzheimer's appear. There are risk genes, which increase the likelihood of developing the disease, but do not guarantee it will happen. Receiving an accurate diagnosis is often difficult.

If diagnosed, you will face unique challenges when it comes to family, work, finances and future care. The situation is quite different when compared to the circumstances surrounding the diagnosis of the elderly.

Impact on the Family

1.         Your role as a parent: If you are still raising a young family or teenagers at home, the family dynamics and relationships will change. Your spouse or partner may feel a sense of loss or loneliness as a result of the diagnosis. You may be concerned about what role you can continue to play in your children’s lives. They will be afraid when your behaviors change, worried about communicating with you and how to stay connected. Talking with them about the disease will be difficult, they will be confused and scared. Counselors may suggest, if the circumstances warrant it, to delay discussing the diagnosis, or how much information to share.  Finding a support group appropriate for a young spouse and young children might be difficult.

2.   You and your spouse may be concerned about the stigma of the disease and not feel comfortable continuing friendships or having neighbors over. You may be tempted to withdraw from relationships and become isolated. Instead, be open and honest with extended family or friends that might avoid interacting with you. Educate them on misconceptions about Alzheimer’s and why it is important to stay engaged in meaningful relationships. Try to find activities you and the family can still enjoy together.

3.     Don’t be in denial. You have a chance to put financial and legal plans in place to protect your family’s future and also to make decisions about the future care you will need.

Impact on Your Job and Income

1.     Many people diagnosed with younger-onset Alzheimer's have a career. The first question you may ask yourself is “Can you keep working?” If caught early, there are many ways to manage symptoms.

2.     It is critical that while you are still employed you educate yourself about the benefits available to you through your employer. These would include disability insurance, Family and Medical Leave Act benefits, COBRA health care coverage, or retirement benefit plans you could tap into.

3.    The Social Security Administration (SSA) has added early-onset (younger-onset) Alzheimer's to the list of conditions under its Compassionate Allowance program, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Impact on Your Future Care

1.     The health benefits associated with maintaining your physical, emotional, social and spiritual health may help improve your daily life.

2.    Take care of your physical health with diet and exercise. Adopting a healthy lifestyle can help you live well with your diagnosis for as long as possible. Multiple studies have shown the benefits of physical activity for individuals with Mild Cognitive Impairment (MCI) or Alzheimer's.

3.    Coming to terms with a serious diagnosis like Alzheimer's disease involves embracing changes in your emotional state. You may experience unwanted feelings and emotions due to frustration with daily changes. Anxiety and depression may be the symptoms of Alzheimer's. You may have frustration, anger or confusion, and no control of your emotions. As a result, you may be unsure of yourself around family and friends or in social situations. Learning to express yourself can help you cope with emotional responses, and help those around you react in the most appropriate ways.

4.     Spirituality and reducing stress can help improve concentration, decision-making and your quality of life. Recognize the triggers that cause you stress. Establish boundaries and let others know your limits. Take breaks when you need to, get plenty of rest.

5.     Coping skills will help you handle day-to-day challenges, maximize your independence and live a meaningful life with your diagnosis. You will notice changes in your ability to complete daily tasks that once came naturally to you. Set realistic goals and expectations. Coping strategies doesn’t have to be complicated:

a.       Develop a daily routine. Approach one task at a time.

b.       Make a list of tasks that have become more challenging.

c.       Determine if the task is necessary and will help you get to your goal.

d.       Find the solution that works best for you. Try simplifying the process

Accept help from others. It is not a sign of weakness. Use your sources of strength: family, friends, and prayer, pets — all these sources can get you through hard times, even as you face daily challenges or setbacks. Talk to your doctor. Research resources like the Alzheimer’s Association. Begin to build a care team.

Contact us: Caregiver or companion care services may be the piece of the puzzle that helps a loved one with younger-onset Alzheimer’s remain at home and maximize their independence. A working spouse may need to keep their employment for financial reasons and not able to provide care or transportation during the day. Levels of assistance or amount of care can be customized as the Alzheimer’s progresses to lessen the burden of care on a young family.

Till Next Time!

Irv Seldin, JD, Owner and CEO, Visiting Angels of the Palm Beaches

This article is not intended as medical, legal, or financial advice.