Being diagnosed with Alzheimer’s disease or another form of dementia is life-changing. It’s one thing when an older senior receives the news: while still unsettling and scary, it’s something that you or your loved ones have probably thought about. However, if you’ve been diagnosed with early-onset dementia – meaning you’re under the age of 65 – this can be unexpected and devastating news to you and your family.
“Early-onset dementia can occur as early as your 30s, which makes it a particularly cruel and unexpected disease,” says Devon Sicard, Executive Director of Bridges® at Pembroke, a memory care assisted living community in Pembroke, MA. “Being in a different stage of life than elderly seniors mean that there are different considerations and plans that need to be put into place in order to ensure the best quality of life for yourself and your family.”
Individuals with younger-onset or early-onset dementia can be in the early, mid or late stages of disease. It’s also possible that receiving an accurate diagnosis was a long and difficult process – it’s common to be told that the symptoms are due to depression, stress or menopause. Whatever the case, there are unique challenges facing you and your family once an appropriate diagnosis has been made.
“While this diagnosis can be difficult for everyone at first, remember that dementia is a progressive disease and your life doesn’t have to change overnight,” says Devon. “While each person’s journey is different, know that there still is time to make plans for the future and enjoy the present to the fullest possible extent.”
Family Concerns
One of the biggest issues for those with younger-onset dementia is caring for their family. Many of these individuals may still have children at home. It can be painful to realize that the normal family dynamics will change, and that you will no longer have the future you envisioned with your spouse or children.
The best way to plan ahead for these eventualities is to be honest with those who are close to you. Talking with your children about your dementia diagnosis will more than likely be difficult. However, it’s best to keep them and your spouse in the loop as much as possible so they know what to expect and what the road looks like ahead. Your children, spouse and perhaps even parents will be your biggest support, emotionally, physically and mentally, moving forward through your journey.
Financial Planning
As the disease progresses, you or your loved one will need more and more assistance until the point that 24/7 care is required. Fortunately, knowing your situation will allow you to put financial and legal plans in place to fund your health care as well as the care and future of your loved ones.
The best course of action is to speak with a financial planner and an attorney, preferably someone who has experience with dementia and end-of-life planning. He or she will be able to help you navigate the murky waters, establish trusts and powers of attorney and can also assist you with finding resources to help you stretch your money now and in the future.
Career Planning
Many people diagnosed with early-onset dementia may have an established career. You may still have been looking forward to a decade or longer of work until you retired. If your employment has been your family’s primary source of income, this will require significant change moving forward. You and your spouse will need to sit down and discuss plans on how to plan for the future.
For example, will you be able to keep working for a while? If so, what does that look like, and when would you reach a point that you have to quit work? How will you replace your lost income? Will your spouse require to start working, or will they need to quit to care for you as a primary caregiver? What sort of future costs will you incur? At the very least, you will need to reassess your family budget to determine what changes need to be made to your current lifestyle.
It’s best to speak with your employers before your performance is affected by your disease so they can help you plan for the future. For example, they may have disability benefits available, or there may be flexible work options that you could leverage in order to create a working environment that is more beneficial to you. Be sure to keep written confirmation of all benefits and document your conversations with your employer, HR and other parties at work.
Assistance Programs
Finally, it’s a good idea to meet with a social worker or other professional who can help you navigate the emotional journey you’re on, as well as help you find resources available that you might not know about. For example, you may be eligible for Social Security Disability, and you’ll want to take full advantage of that. Individuals with early-onset dementia may also eligible for Medicare. There are also programs like Meals on Wheels and other services that could help take some of the work off your plate and provide you and your family with assistance moving forward.
This is just a short list of tips for creating a plan ahead. As the journey progresses, your plan will change as well. You’ll also want to stay in close contact with your physician and do everything possible to stay as healthy as possible in order to ensure the best possible outcomes.
“Early-onset dementia is a life-changing occurrence, but it’s not a life-ending situation,” says Devon. “Although it means your future looks much different than before, remember that there are still many years ahead of you and still many opportunities for you to enjoy, experience and find joy.”
Expert, Life-Enriching Memory Care
Bridges® by EPOCH at Pembroke provides memory care assisted living that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia, our community promotes a wellness-focused lifestyle that emphasizes dignity and individual preferences. Our memory care professionals receive specialized, ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents.
Inspiring Programs for All Stages
Bridges® by EPOCH at Pembroke’s services are designed to recognize and adapt to the unique challenges and individuality of each resident, while ensuring comfort and safety. We believe in a full-service approach to care and provide personalized attention and programming for residents in every stage of memory loss.
Purposefully Designed Community
Within a beautiful residential design, Bridges® by EPOCH at Pembroke provides everything residents with Alzheimer’s disease and other forms of dementia need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a soothing and secure environment where residents feel at home.
Contact us today to learn more.