You Are Not a Burden

A dementia diagnosis can change many things. It can change routines, create new challenges, and force difficult conversations that you may never have expected to have.

What it does not change is your worth.

Unfortunately, many people begin to question their value after receiving a diagnosis. They worry about becoming dependent on others. They feel guilty when they need help. They apologize for forgetting things. They start to see themselves as a problem that needs to be managed instead of a person who deserves to be respected.

If that sounds familiar, there is something important you need to hear:

• Having dementia does not make you a burden.

• Needing support does not make you a burden.

• Needing patience does not make you a burden.

Being diagnosed with dementia does not erase a lifetime of experiences, relationships, accomplishments, and contributions.

You are still you.

Your Diagnosis Is Not Your Identity

One of the hardest parts of a dementia diagnosis is that other people sometimes begin to see the diagnosis before they see the person. Conversations may change. Family members may become overly protective. Some people may start speaking for you instead of speaking with you. While these changes are often well-intentioned, they can feel frustrating and even hurtful.

Have direct, polite discussions about how much help you feel you need right now. Be clear that a diagnosis does not remove your autonomy, and you are capable of making decisions at this time. If family members push back, remember they are also in a stage of worry and may be trying to control the uncontrollable. Have them seek out education, or provide them trusted sources as reminders that dementia is progressive, not instant.

Accepting Help Is Not the Same as Giving Up

Many people struggle with accepting help after a diagnosis.

They worry about inconveniencing family members. They feel guilty asking for reminders or assistance. Some even hide their difficulties because they do not want to be seen as a problem. The problem with this approach is that it often creates more stress, not less.

Accepting support is not weakness. In fact, accepting support is often what allows people to maintain independence longer. Adapting to the challenge is a key component of living with dementia, and using aids are no different than other types of aids used.

People use glasses when their vision changes.

People use hearing aids when their hearing changes.

People use mobility aids when their balance changes.

There is no shame in using tools or accepting support when dementia creates obstacles.

You Still Deserve Respect

Perhaps the most important thing to remember is this: your diagnosis does not reduce your value as a human being.

There may be days when you feel frustrated, scared, angry, or discouraged. Those feelings are normal. A dementia diagnosis brings uncertainty, and uncertainty can be difficult to carry. But do not allow the diagnosis to convince you that your life has lost its meaning.

You are still a parent, spouse, sibling, friend, neighbor, veteran, teacher, artist, caregiver, volunteer, mentor, or whatever roles have shaped your life. You are still the person who made people laugh, showed up when others needed help, celebrated milestones, overcame challenges, and built relationships over the years.

Dementia may change parts of your journey, but it does not erase the person who has traveled it.

You still deserve to be included in conversations about your life.

You still deserve to be spoken to with respect.

You still deserve meaningful relationships, activities you enjoy, and opportunities to make choices whenever possible.

You are not a burden.

You are a person living with a diagnosis.

And those are not the same thing.

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If you're struggling to find ways to make your loved ones understand what is to come, we have a section dedicated to educating them on dementia. Feel free to refer them here: My Loved One Was Diagnosed - Now What?

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