11 Things People Living with Dementia Want You to Know

11 Things People Living with Dementia Want You to Know post page

By Valerie FeurichNovember 2nd, 2021

11 Things People Living with Dementia Want You to Know

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
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
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
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
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
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
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
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
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
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
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.
An image of differently colored game pieces with the word "inclusion"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.

Therefore, in addition to Positive Approach to Care (PAC) Speakers, Teepa Snow’s PAC 2021 Virtual Conference All GEMS Can Shine features speakers and advocates who are living with dementia to share what each person can do to enhance quality of life once dementia is present.
An image with the words "thank you"A big thank you to the Black Dementia Minds group for helping us in the creation of this blog, and for their efforts in transforming the worldview of Neurocognitive Disorders.

Learn more about them by clicking here.
Looking for something that focuses on what remains, not what is lost, after a dementia diagnosis?
This year’s annual Positive Approach to Care® Conference with Teepa Snow will highlight the changes that we all experience throughout life and how that connects or relates to dementia.

The content will take a deeper look at the brain, the changes associated with dementia, and what each person can do to enhance quality of life once dementia is in the picture.
Learn More About the 2021 PAC Conference Now >>
Last Chance:
2021 PAC Conference Ticket Sales End 11/13/2021!

14 Comments on “11 Things People Living with Dementia Want You to Know”

  1. They probably would like people to respect their privacy also. My mom cannot have toilet paper, paper towels, trash can or soap in her room because others wandering room to room. That alone bothers her but the fact that people can walk into her room (other residents) at any time also is dangerous. We need to do better. We can protect our family member in memory care without locking them up completely.

  2. While I definitely agree that all people need to be treated with dignity, there comes a time when you simply cannot include a dementia patient in daily necessities. They can be argumentative, accusing, belligerent. Caregivers have it tough enough…don’t make us feel guilty for not always including the person with dementia. Sometimes you gotta just get thru the day.

    I do find help and comfort in a lot of what’s written here, however sometimes the “fairy tale “ attitude is annoying – “Oh, play card games or do puzzles with the dementia patient”, “Read to them”, “just hold their hand”…all that when the dementia patient is cursing you out or throwing handfuls of fecal matter around.

    My situation isn’t that bad yet, but I know it’s coming and I am not going to be made to feel like a failure because I can’t get my loved one with dementia excited about coloring. You just try to get thru the day knowing the situation won’t last forever. You do the best you can.

  3. The article should be read more than once. More than just occasionally as well. I feel it is a good idea for me to read it again and again and focus on perhaps one of the suggestions for awhile. By focusing, I mean teaching my brain to help change my behavior into being more helpful and certainly not hurtful. Practice what it says. Give it lots of practice and time to observe what might be making a positive difference. So, I’ll read, practice what it suggests, observe the outcomes and then to become more aware of my behavior with my loved one with dementia. Thank you for this helpful article.

  4. Caregivers are also overlooked for conferences and research. Who cares if we die in the process? We see tons of videos of how it should be done and most are in care facilities or homes of the rich with grab bars, shower chairs, flexible shower hose. It is like slapping our faces and saying we are worthless. All we see is perfection and the Social Workers, Occ. Therapists, Nurses, who feel they have all the answers and could care less about the caregiver. Everybody seems to have answers for how we are not doing it right or we would never get slugged or abused. So we hide it and never tell because of the shame brought to us by those who are not in our shoes.

  5. It’s so important to just BREATHE when we get overwhelmed. STOP, TAKE A BREATH, and make sure that we take care of ourselves as well as the dementia client. My experience as a caregiver has taught me that scheduling quick breaks (sometimes taking extra bathroom breaks or stepping out of the room breaks) helps to deescalate frustration for both parties. It also helps greatly to TAG TEAM IT with family members or other caregivers when someone with dementia is easily agitated.
    It would help greatly if employers of caregivers and other family members would be realistic about the one on one time required to care for folks in a respectful and caring manner. This job is not easy and being rushed just adds tension. Dementia clients are especially sensitive to all emotion and reflect what they perceive coming their way. Anything negative is reflected magnified by 1000 and anything positive is reflected magnified by 10 in brief short spurts. We’ve all got to grab those spurts of joy and hold tight so the negativity doesn’t drown it out.

  6. I have so much trouble guarding my tongue when he denies doing something. There are only 2 of us in the house. Finding things he loses is a challenge you can’t ‘hide’ everything. I have no back up people so going to another room is about all I can do. Our daughter died this year and we have no family here.

  7. I can understand about holding my tongue when my spouse denies he does something or has no idea. I think I have a problem accepting. i also get frustrated when I can’t find things and I am in a rush, I have alot to work on. Teepa calls it Brain Failure. Thats what I have to remember.

  8. What do you do if a patient shows/lives like there is dementia in the mix and yet be told by a specialist it’s depression? When I’ve waited for several years and it’s evident to everyone else, it’s a hard pill to swallow to chalk it up to depression. Yes, I do not treat him with disrespect yet I redirect him or motivate his thinking to do things. When his test results come in, should the Dr that did them say my husband has dementia I will/am lose it after she (before all tests were in) told him in so many words he’s potentially depressed! Help! My family and I are frustrated just trying to get answers.

  9. This was most helpful I read this with my husband who.has memory issues. Thank you from both of us!

  10. I would like All lectures, and talks to include a Call in Number. Dome people don’t have access to computer or are unable to use it.

    Thank You

    1. Hi Linda,

      Thank you for leaving the comment. You are right, some people wont be able to access a lecture if they cant call in. We will do our best to include a phone number so that people can call in.

  11. I cannot get used to the constant changes, however I do accept what will happen to me and try my hardest to move with others. My worst problem is trying to put things together in my mind. This is very frustrating. And I can have a total blank in the middle of a sentence. When people are round I tend to have moments where I become quiet because I cannot keep up with what is being said an I don’t expect them all to slow down because of me. I feel lonely sometimes, I am not sure that it is happening but I feel as if some people are avoiding me. I feel that friends that we had, and some particularly close to me, and now mainly friends of my wife. I have always written, I have always enjoyed conversations and debate, I like facebook but sometimes I look back at my comments and think that perhaps I should not have written that. I think perhaps I may have to come off facebook which will be cutting off yet another point of conversation etc. I do realise what can happen to those in this situation and accept anything coming to me. Unfortunately I have another, seperate, illness that may shorten my life. But I accept all of this, I have to. I just want to be able to converse in whatever I can to any degree possible. I have read all about dementia, and dug up all I can. On a personal level I began my family tree over 35 years and have thousands going back through royalty. I know I must keep going despite the fact that it is becoming more harder and confusing. I also understand that a lot of the problems of dementia belong those to those trying to help me. This makes me feel guilty but though I try my best I understand that I will require help. I would love to be able to help others. Face to face with medically trained experts are hard to come by. I do not know your intention with these comments but allowing people to read the comments of those going through it, and perhaps being able to comment, could be the best way of dealing with it. I t has helped me to read, and write on here. Good luck.

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