One day, you notice your family member is experiencing consistent memory loss and a decline in their reasoning and thinking skills. Despite the initial disbelief of early-onset dementia, you take them to the doctor for a thorough check-up. Their doctor decides to run some tests.
The results come back, and your worst nightmare becomes a reality.
Your heart skips a beat after the doctor delivers a diagnosis of early-onset dementia. Suddenly, you feel like a dark storm cloud has formed over you. You feel alone because you can’t think of anyone else in your situation. Unfortunately, these are normal feelings following this heartbreaking diagnosis.
Following the devastating news, the doctor shares information about the diagnosis and provides support. You learn that dementia refers to many conditions causing significant impairment in daily life, with Alzheimer’s disease being the most common. This happens because dementia causes a loss of memory, language, problem-solving, and other thinking abilities. The doctor explains that conditions are more common in older adults but can affect younger people.
Although these health conditions are more common in older people, we assure you that you are not alone. A community of support and help is available, and we are here for you. Knowing that a network of support is available can provide a sense of security and comfort during this challenging time.
Ways To Establish Your Support System
Despite not being the one with the diagnosis, you and your family members need support. Yet, you may need help figuring out how to start building your support system.
Let’s break down some of the support systems that are available to you.
Support Groups for Early-Onset Dementia
While the diagnosis may make you feel isolated, it’s important to remember that you are not alone. Many people’s family members receive a similar diagnosis. This shared experience can help you feel less isolated and more connected to a community of understanding individuals.
Support groups are a great way to connect to people who understand you. This community shares your struggles and feelings. Here, you can discuss what you’re going through with people who can relate.
Attending these meetings can teach valuable tips and coping strategies. Learning these will help you navigate your family member’s diagnosis. Thus empowering you with the knowledge and skills to face the challenges ahead.
You can find support groups on the Alzheimer’s Association and the Well Spouse Association websites. Although both resources are similar, they have a couple of crucial differences.
The Alzheimer’s Association’s mission is to end all dementia-related conditions. Its website includes resources and a variety of support groups. They offer in-person, hybrid, and virtual support groups, so you can find one that matches your needs and preferences.
Meanwhile, the Well Spouse Association has a slightly different focus. It supports caregiving partners and offers resources for connecting couples in your situation.
As you search for the best support group, it’s helpful to know the difference between ‘early-onset’ and ‘early-stage.’
- ‘Early-onset’ refers to the age of onset of the disease, not its stage.
- ‘Early-stage’ refers to the progression of the disease.
This distinction will help you connect with people who can most relate to you. So make sure to look for “early-onset.”
Family Members & Friends
Your friends and family members are not just your closest support system, they are also your lifeline. You can rely on them when life throws a curveball your way. Right now, it is no different. You will need them now more than ever before, and their support is invaluable in this journey.
After sharing the news, communicate with your friends and family. They may need help learning how to support you best.
Communicating with family and friends will help them better understand your needs. They may also need guidance on interacting with your family member. Offering them strategies for interacting can boost their confidence about expectations and interactions. This, in turn, will strengthen your support system.
Working with a professional can help if you struggle to navigate these conversations.
Legal & Health Care Professionals
Navigating your family member’s early-onset dementia diagnosis can lead to feeling considerable stress.
Together, you will have some significant issues to tackle. Yet, there’s no need to do it alone. A trained professional can support you in this new chapter of your life, providing you with a sense of security and guidance.
Attorney
As your family member’s disease progresses, they will struggle with making personal decisions. To prepare for this, we recommend working with an attorney.
An attorney can prepare legal documents for when they can no longer make personal decisions. They could also connect you with other healthcare professionals.
Therapists
You may become overwhelmed as your family member’s disease progresses. Talking to a therapist about sensitive topics with your family members can help. Some topics you can bring up include:
- Finances
- Sex
- Household chores
- Sharing the news with others
- Driving
- End-stage care
Geriatric Care Managers
Geriatric care managers can support your family with aging-related challenges and diagnoses. They will create a long-term care plan, which is critical for people living with early-onset dementia.
Having a care manager on your side can set expectations and guide you as the disease unfolds. It can also decrease some of your caregiving stress. Our care managers are ready to support you in this new chapter.
How Careplan Can Support You
At Careplan, we are Northeast Ohio’s experts in geriatric caregiving. Our trained geriatric care managers can support your family’s unique needs.
Early-onset dementia includes a challenging group of conditions. There’s no denying that these diseases progress quickly. Yet, having a solid support system can help you decrease stress.
Reaching out early and frequently about the support you need is critical because it will decrease your stress significantly.
Contact us today so you don’t have to go through this alone.