Have you ever noticed that many conferences or events about dementia care don’t actually have any people living with dementia in attendance? How is it that when talking about dementia, those who are living with it are not actually asked or consulted about their experience or needs?

Yes, when a person is living with dementia, their abilities will change with time. Yet, often people living with dementia are not asked for their input no matter what state of the condition they’re in. However, the scope of missed opportunities to learn from one another and improve people’s lives, as a result, is hardly comprehensible.

To help break the barriers, we’ve asked PAC CORE Team Members (people who are living with dementia) and members of the Black Dementia Minds group what they would like care partners to know. While there are many things to learn, here are a few key points to start with:

1. It’s not just an older person’s disease

Did you know that at the writing of this article, there are thought to be over 100 different types and forms of dementia? Some of them, such as Younger-Onset Alzheimers Disease or Frontotemporal Dementia (FTD) can develop at a much younger age. Symptoms can begin as early as when people are in their 30s, 40s, or 50s.

2. I’m still here, I’m still me, and I can do things

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Treat people the way you would want to be treated. Speak to people the way you want to be spoken to. Yes, the person you’re talking to may be living with brain change, but that doesn’t take away their right to be treated as an adult with respect and dignity.

3. I’m not a child, don’t treat me that way

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Just because a person has been diagnosed with dementia, doesn’t mean that they suddenly change or lose all of their abilities in an instant.

Yes, dementia is progressive, and yes, things will change over time, but a diagnosis does not automatically strip a person of their ability to do things. Let people living with dementia continue to contribute as long as possible, and recognize the person, not the disease.

4. Don’t assume or prejudge what I’m saying

www.istock.com/Roman Didkivskyi

Allow people living with dementia a little more time. Really listen to what I’m trying to say, and don’t just assume that I’m not going to make sense. Yes, I may need you to give me a little longer, but I still have a voice that deserves to be heard.

5. Give me an opportunity to participate

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People living with dementia often are overlooked and not asked to participate. Again, just because a person is living with brain change does not mean that they can’t or won’t do things.

Allow me the chance to participate, and don’t exclude me just because I’m different. Even if I may not be able to do things exactly as I used to, I may still enjoy doing them anyway or cherish connecting with those around me.

6. Accept each person and their abilities

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We’re all in this together. It’s an even playing field, not a competition. This goes for everyone, but also for circles of people living with dementia. Accept every person for who they are and what they can do. Everybody has a place to shine; everybody can do and contribute something.

7. Be patient with us

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Yes, it may take me a little longer, but I can still do things if you give me the chance. Offer support and do things with me, not to me.

8. Don’t assume I have everything together

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Sometimes I may look like I have everything together, but if you take a closer look, you may realize that this is not the case. Be observant and supportive, and remember that respect matters, too.

9. Don’t assume I don’t understand

www.istock.com/leekris

Continuing from the point above, please don’t immediately assume I may not understand something. Talk to me, and give me a little time to process and formulate a response before you come to a conclusion.

10. Talk to me, rather than about me

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How would you feel if people talked about you, but not to you? Likely, you would not appreciate it. Well, neither do people living with dementia. Involve people living with dementia in the conversation as much as possible. Talk to them directly, rather than about them or to the person next to them.

11. The more you know and understand, the better you can help

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This point is not for care partners only, but is meant for anyone. Whether you’re a physician, facility staff member, friend, or family member, the more you know about the condition and the person who is living with it, the better you’re able to help.

Learning about how dementia affects a person allows you greater insight to figure how to offer the best support, thereby helping the person to live their best life possible even with a dementia diagnosis.

Conclusion:

Have you noticed one of the main themes that runs through many of the points listed above? If you’ve said don’t make assumptions – congratulations! You’re spot on.

And do you also know how we can reduce our chances of falling into the habit of making assumptions? After reading the list above, you may know that it is making sure to include people living with dementia in our conversations. As some of those living with the condition rightly explained, Nothing about us, without us.

After all, if we don’t talk to people living with dementia, we’re left to make assumptions that may or may not be true. By not including people living with dementia in our conversations, we miss the chance to learn from them about their experiences. We miss our chance to offer the most meaningful life and care to those living with brain change.

By Valerie Feurich

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