Early-onset dementia, also known as young-onset dementia, refers to cognitive declines that happen in the brain before age 65.

Early-onset dementia is unexpected, meaning that individuals who’ve been diagnosed and their families are usually unprepared for what lies ahead. If you’ve just received an early-onset dementia diagnosis in your family, this blog post can help you to create a care plan for your loved one and to plan for the future.

Caring for a Younger Person With Dementia Comes With Unique Challenges

Early-onset dementia can start as early as age 30 but usually starts around age 50. Because it starts earlier in life, there are some unique challenges that come with early-onset dementia. 

People with early-onset dementia are more likely to have:

• Children who still depend on them
• A home mortgage and other big financial commitments
• A career

This means that they’ll need special support when it comes to key areas of their lives. As a caregiver, you’ll need to understand and accommodate their specific family, career, financial and legal needs.

What To Do After a Diagnosis of Early-Onset Dementia

Talk to a Lawyer About Being Granted Power of Attorney

As soon as your loved one is diagnosed, you should make an appointment with a lawyer to create a Power of Attorney (POA). This document gives you – or whoever your loved one designates – the legal authority to make financial, property, and personal care decisions for the individual with dementia.

Getting a Power of Attorney protects you, them, and your entire family. No matter what the future holds, a POA will ensure someone is looking out for your loved one. While you’re there, you can also ask your attorney to help your loved one create a will and other important legal documents.

Handling Career Changes With Early-onset Dementia

If your loved one has a job, dementia can complicate things. Just like any other type of dementia, early-onset dementia usually begins with milder symptoms, including:

• Trouble remembering people’s names or faces
• Trouble remembering appointments and other important dates
• Problems with recalling things that happened recently
• Reduced concentration or focus
• Increasingly poor judgment
• Trouble solving basic problems, such as keeping track of bills or following a favorite recipe
• Trouble joining conversations or finding the right word for something
• Misplacing things and not being able to retrace the steps to find it
• Withdrawal from work and social situations
• Changes in mood and personality

As these symptoms worsen or increase in frequency, it can make keeping a job difficult. Many people with early-onset dementia are let go from their jobs or feel that they have to leave them. This isn’t ideal for those who are still dependent on their income or benefits to care for themselves or their families. 

Your loved one can handle their job situation in a few different ways. If they are unable to address it themselves, you can help.

Your loved one can handle their job situation by:

• Finding out if an employee assistance program is available and what services it offers
• Asking if early retirement is an option
• Reviewing company benefits to determine if they qualify for paid time off or looking into other options. The Family and Medical Leave Act (FMLA) requires employers to provide employees with up to 12 weeks of unpaid leave each year for medical and family reasons.
• Looking into continuing their health care if they are let go or decide to leave their position. The Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985 lets qualified individuals keep their health insurance for up to 36 months after leaving a job.

Early-onset Dementia and Children

An early dementia diagnosis can be especially challenging for individuals who have children or teens still living at home or adult children who are still dependent on them. Children and teens may experience a range of difficult emotions about the situation and, depending on the age of the children, childcare may become an issue.

The first thing to do is to have an honest conversation with the whole family about the diagnosis and what it might mean for the future. 

Financial Planning

Dementia symptoms will often force the individual to stop working at some point. It’s best to be prepared for this ahead of time by doing some financial planning. 

Financial planning might include:

• Looking into your loved one’s retirement plan – some plans will let you access your fund early if there’s a medical reason
• Discussing the best ways to manage finances and plan for the future with your loved one
• Meeting with a financial planner and accountant to figure out all of the available options

How to Care for a Younger Person With Early-onset Dementia

Being a caregiver comes with challenges, and that’s especially true with early-onset dementia. Because the condition happens earlier in life, most families aren’t prepared and caregivers are often spouses. If you’ve suddenly found yourself in the position of caregiver, you’re probably feeling a lot of different emotions. You also probably have a lot of questions, starting with “Where do I begin?”

If you’re not sure where to start, we want to give you some advice on being a caregiver.

Start With Creating a Caregiver’s Schedule

Routine is very important when you’re caring for someone with dementia. Individuals with dementia often feel confused, agitated or scared, especially as the condition progresses. Routine and structure help to build a sense of security and safety. 

Routine will give your loved one a sense of having more control in life, which will support the formation of healthy habits, and encourage them to maximize their physical and cognitive abilities – making an impact on health, wellness, and overall quality of life. 

Routine is also important for you. Creating a caregiver’s schedule will lead to less stress and better self-care and prevent burnout.

Use All the Tools at Your Disposal

There are countless tools that can help you with caregiving. Apps can be used to improve your loved one’s cognitive function or to keep them calm or entertained. Medication management tools, like pill organizers, medication reminders, or apps, can help you and your loved one remember when they’re supposed to take their medications. Alarms can help you both to remember important times of day. 

Find more tools that can help with dementia caregiving here.

Don’t Be Afraid To Reach Out for Help

The best advice we can give you is to not hesitate to reach out for help! Caregiving can be very difficult, but a support system can make all the difference in the world. Reach out to your friends and family members for advice, emotional support, and practical support like helping you with care or other obligations.

There are also plenty of resources available for caregivers. At Sundara Senior Living, we offer respite care, so you can take care of other things or take a well-deserved break.

Many caregivers choose to join a support group. A support group of other caregivers can be a wonderful source of comfort when times get hard. If you’re looking for a support group in the area, here’s a list of caregiver support groups in the Round Rock/North Austin area.

Looking for more information? Check out our resources page.

Find Professional, Compassionate Memory Care at Sundara Senior Living in Round Rock, TX

At Sundara, we understand that the decision to move your loved one to memory care is one of the hardest decisions you’ll ever have to make. Whether the time for memory care is now or years in the future, we’re here for you. We have years of experience working with individuals with dementia and are always happy to share our knowledge with families who are impacted by this terrible disease.

If we can help in any way, please let us know. You can email us at info@sundaraliving.com or call us at 512-399-5080.

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