Getting a dementia diagnosis is a life-changing moment for anyone, no matter what stage of life they are in. But for those who are diagnosed with early-onset dementia, the news can be even more devastating. Early-onset dementia is defined as dementia that is diagnosed before the age of 65. It generally is diagnosed around the age of 50, but can start as early as age 30.
“Early-onset dementia has some unique challenges that individuals with later-stage dementia don’t often have to face,” says Amanda Jillson, Executive Director at Bridges® by EPOCH at Nashua, a memory care assisted living community in Nashua, NH. “Someone with early-onset dementia often has younger children who depend on them, are in the middle of their career and have large financial commitments like a mortgage payment or student loans. Because of their unique challenges, they require additional, specialized support that older individuals with dementia may not need.”
Step 1: Accepting the Diagnosis
The very first step in dealing with early-onset dementia is to accept the diagnosis. “Accepting” doesn’t mean that everything is hunky-dory and you move forward without a care. Accepting simply means working through your feelings and emotions in a helpful manner, finding support and taking time to process and coming to the internal understanding that this is your “new normal.” Once you’ve reached a level of acceptance (we say “level” because your feelings and emotions can and will vacillate from day to day), you are more able to move forward in a positive manner and put plans in place to help you and your family prepare for the road ahead. It’s important to note that Step 1 may never be officially “completed,” as it is an ongoing process, much like the disease itself.
Step 2: Taking Legal Steps
Since early-onset dementia is a progressive disease, it’s important to act swiftly when it comes to making big decisions. As soon as a diagnosis is reached, the individual with early-onset dementia and their primary caregiver (usually a spouse) should meet with an attorney to discuss and create a power of attorney. This document allows your designated representative to make decisions (personal, financial and property) on your behalf. For healthcare decisions, you will need to also create a medical power of attorney. You should also take steps to put together a will, any trusts and a comprehensive estate plan so your wishes are made clear.
Step 3: Telling Others
Telling others about an early-onset dementia diagnosis is not easy. It can be especially challenging if you have younger children living at home. Children can have a wide range of feelings and emotions regarding their parent’s condition, such as being scared about what’s happening, worrying about the future, anger about the situation and many others.
Experts agree that the best thing to do is speak honestly and in an age-appropriate manner to kids about what’s happening. Even if it is upsetting, it’s better to let kids know what’s going on instead of pretending like everything’s fine and hiding things from them. Equipping children with knowledge about the disease and what to expect will help them process the diagnosis and get them to that acceptance stage, too. You can also choose who else to tell about the diagnosis – how little or how much is up to you – but absolutely make sure that the nuclear family has the information they need to get ready for the future.
Step 4: Telling Those at Work
The majority of people with early-onset dementia are still in the workforce. In the early stages of the disease, it’s possible that they can continue to work, but as the disease progresses it will have a larger and larger effect on their ability to perform tasks – which results in being “let go.”
As soon as possible, the individual and the caregiver should connect with employers to discuss options – for each of them. For the individual with early-onset dementia, consider asking about early retirement, or find out if there are assistance programs available for employees. You’ll also want to look over company benefits. If you work for a larger company, there may be an advocate on staff who can help you navigate some of these issues. One thing you should certainly discuss is eligibility for the Family and Medical Leave Act (FMLA), which allows people to take up to 12 weeks of unpaid leave each year for family and medical reasons.
Step 5: Planning for Finances
Early-onset dementia can be particularly tough for families because the individual has to stop working prior to retirement age. Caregivers may also have to quit or cut hours at their jobs, leaving the family with reduced income. As soon as possible, meet with a financial planner, particularly one who has experience in issues like this. Here are some things to discuss:
- Discuss your current financial plan, your needs and what you can do to limit spending
- Find additional sources of income, tax deductions or government benefits such as disability insurance and Medicare
- Talk to holders of retirement plans to discuss accessing retirement funds before retirement age
Step 6: Planning for the Future
Finally, while planning for the financial, legal and other logistical parts of this disease, the individual with dementia and their spouse or caretaker will need to sit down and discuss what will happen, on a personal level, as the disease progresses. As the individual with early-onset dementia worsens, how should the caregiver react? Will he or she remain as primary caretaker, or will outside services be required? Should the individual go into a memory care assisted living facility or use in-home care?
There are many aspects to think about when it comes to preparing a home to be safe for early-onset dementia individuals. This includes both the environment and the attitude and approach for those living in the home with him or her. It may be hard for children to accept and adapt to the changing personality of their loved one, and the spouse or caregiver may face frustration as the person they love starts to change due to the disease. By looking at all the potential issues and coming up with a plan for how to deal with them, a family will be better able to navigate the path ahead.
“Early-onset dementia is a life-changing diagnosis, but it’s important to remember that you’re not alone,” says Amanda. “There are many resources available to you and your loved ones, including assistance from memory care assisted living communities like Bridges® by EPOCH at Nashua. By reaching out to community resources and other caring organizations, you’ll find yourself supported and assisted through all stages of this journey.”
A Fulfilling Lifestyle
Bridges® by EPOCH at Nashua provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and 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 each and every day.
Many Services, One Monthly Fee
Our dedicated memory care and services celebrate life and support each resident’s individual strengths. No matter what stage of memory loss a resident may be experiencing, their family can be sure that with us, their loved one is safe, secure and happy.
Stunning, Purpose-Built Design
Featuring a stunning design and luxuries only a new community can offer, Bridges® by EPOCH at Nashua is so much more than a beautiful place to live . . . it’s a community with a singular focus: enrich the lives of our residents and help their families enjoy meaningful relationships with them. Our evidence-based design features attributes that make life easier for those with memory loss: soft colors, directional cues, aromatherapy and interactive life stations.
Contact us today to learn more.