You and your family have noticed things that aren’t quite right. You’ve been overly forgetful, and having difficulty finding the right words to say what you want to say. You’re having a hard time with tasks that used to be no big deal. Your personality is changing. You’re still relatively young, so it can’t be dementia … or could it?
Cognitive decline caused by dementias like Alzheimer’s disease doesn’t happen just in seniors. Early-onset dementia, which is a dementia diagnosis in people younger than age 60, makes up five percent of the dementia cases in the United States.
“An early-onset diagnosis is usually very shocking, and can take some time to absorb,” says Trish McKay, Executive Director of Bridges® by EPOCH at Trumbull, a memory care assisted living community in Trumbull, CT. This is especially true if you still have children at home or have an active career. “While the disease progresses similarly to later-onset dementia, those who are younger will need to make additional plans for the big changes that lie ahead.”
Trish says that getting a strong support system in place as early as possible will be key to your and your family’s future. “Turn to those around you – family, friends and community members – and link arms to make a plan for the rest of your life,” she says. “While early-onset dementia is a life-changing disease, it’s not a life-ending disease. Many opportunities still exist for you to spend time with your loved ones, do the things you want to do and enjoy meaningful moments.”
Legal and Financial Planning
While the emotional side of your diagnosis may take some time to process and accept, there are many things you can start doing immediately in order to set you and your family up for success.
The first things to put in place are legal and financial plans. We recommend speaking with financial and legal advisors who have experience in situations like this (although it doesn’t specifically have to be early-onset dementia; the legal and financial side of things will be very similar to late-onset dementia steps as well). Your legal plans should include: taking inventory of any existing legal documents and making updates; putting plans in place for your finances and property; making plans for any future healthcare and long-term care decisions; naming powers of attorney for financial and healthcare matters.
You’ll want to make sure that you have a will in place that provides for your heirs and your spouse, if applicable. For those with early-onset dementia, you may also have to set up trusts and/or guardianship for your children, depending on how old they are. A good financial planner can help you determine how to pay for your care now and in the future and if there are any government aides or benefits you may be eligible for.
It’s important to note that setting these plans in place – and even signing certain documents – don’t mean that your rights are automatically revoked. The forms you fill out and decisions you make today won’t be implemented until the time that you no longer are capable of making decisions. Making the plans now, however, means that you are able to have control over your future as much as possible. It’s peace of mind for both you and your family.
Care Teams
Next, you’ll want to build a care team that will help you and your family members along this journey. A care team consists of healthcare professionals (doctors, nurses, therapists, etc.), community members and organizations (social workers, church organizations, etc.) and the people who are closest to you – family and friends.
Start by identifying the people you would like on your care team. Think about the different functions they each can perform now and in the future. Then, reach out to your care team members to ask them to be a part of this journey with you. Having specific tasks and plans for them will make it easier for them to say “yes” or “no.” If they do say no, don’t be discouraged. You want people who will enthusiastically say “yes” to being on your team because they will be the ones who you can rely on when things get hard.
Self-Care
As you’re preparing for your care now and in the future, don’t forget about caring for yourself in mind, body and soul. An important part of managing your condition is to keep yourself as physically healthy as possible. Stay positive and optimistic – although this may be difficult, especially at first – studies have shown that people with a positive outlook are better able to manage the disease and maybe even slow its progression. Be sure to eat a healthy diet and get regular exercise.
Practicing relaxation techniques, like yoga or meditation, are excellent ways to help center yourself as well as keep you healthy.
Regular doctor visits will be necessary as well. There are certain medications that can help treat dementia, but they are most effective during the early stages of the disease. The sooner you start getting treatment, the better your quality of life will be moving forward. Your doctor may be able to point you in directions of different treatments or clinical trials that you potentially qualify for – if that’s something you wish.
If you’re still working, you should also speak to your employer when you are ready and comfortable (but before your work performance is affected). Your company may have specific programs or benefits that you can access. You may also be able to work with your employer to adjust your job roles and responsibilities in order to better accommodate your schedule or your abilities. Having your employer on your side sooner rather than later will help you remain employed for as long as possible and set up an even stronger foundation for your later years.
“Having plans put in place and a focused approach to treatment will help you and your family members navigate this journey together,” says Trish. “Don’t forget the assistance that professionals like those at Bridges by EPOCH at Trumbull can provide. We offer support groups, links to community resources and other services that can help those living with the disease live a happy, healthy and fulfilled life for as long as possible.”
Dedicated Memory Care
Bridges® by EPOCH at Trumbull delivers highly specialized memory care assisted living for those with Alzheimer’s disease or other forms of dementia. Our resident-centered approach focuses on providing dignity, purpose and moments of joy in daily life for those in all stages of the disease. We offer a wellness-focused lifestyle that centers around a resident’s current skills and abilities, not those that have been lost to dementia.
Life-Enriching Programs
Our team members take an active role in getting to know each resident on a personal level to deliver programming that is meaningful to them. We account for the preferences, interests, needs and abilities of our residents to connect with them and encourage their involvement in daily life and boost self-esteem.
Warm, Residential Atmosphere
Featuring a stunning residential design, every inch of our community has been designed to benefit those with memory loss. Attributes such as soft colors, directional cues, aromatherapy and interactive life stations create a soothing and secure environment where residents feel comfortable, safe and at home.
Contact us today to learn more.