The inclusion of people living with dementia in their families, friend circles, and communities is fundamentally about slowing down. In our society, where speed and efficiency are valued, slowness is often perceived as a weakness. However, the experiences shared by individuals in the To Whom I May Concern® program consistently highlight the impact of being excluded from conversations, activities, and life due to the rapid pace of interactions.
“In our fast-paced world, everyone wants to finish your sentence. Nobody wants to wait. Patience is definitely not a virtue these days. But I need your patience. My words come slowly. They’re there, but it’s like they’re on a slow train just about ready to enter the station. Give me a minute. That word is coming. I’d be so grateful.”
– Therese
To address this issue, it’s crucial to recognize that the feeling of being left out is often a result of impatience from those supporting individuals with dementia, unintentional in most cases! Therefore, the simple act of slowing down and giving a minute can make a significant difference in including people living with dementia in various aspects of life.
We believe the best insights into living with dementia come from those diagnosed themselves. Here are practical tips for including people living with dementia by simply “giving a minute,” as shared by participants in past To Whom I May Concern programs.
Practical Tips for Including People Living with Dementia
Keeping Up With Conversations:
Socializing is vital for brain health, yet individuals living with dementia are frequently left out of conversations because they struggle to keep up.
“I hope that all people would understand that just talking too quickly can isolate me. Please speak more slowly!”
– John
Participants in To Whom I May Concern ask that we offer patience during discussions. Processing and responding to conversations may take time for individuals with dementia.
“This happens at the dinner table, too, especially if we have friends over. I love the conversation, especially with all that’s going on in the world. But by the time I get my thoughts together to add a comment or answer a question, everyone has moved on to the next topic. You probably think I’m not interested, but really, I just can’t keep up. It’s very frustrating. It’s also embarrassing. I want to be a part of the conversation.”
– Therese
During family discussions, encourage everyone to slow down, allowing space for individuals with dementia to contribute comfortably. This is an important takeaway for organizations that include people with the lived experience of dementia in their advocacy work as well. Make sure to give individuals the space to contribute!
Silence Is Supportive:
Embrace moments of silence during conversations with individuals living with dementia. Silence allows them time to gather their thoughts and respond at their own pace.
“One of the biggest problems for me is when I’m having a conversation. It can be so frustrating when I’m talking and suddenly, it’s gone…my words that is. It is really nice when I am given the opportunity to remember those words or thoughts that I am trying to express.”
– Anonymous long-term care resident
Avoid suggesting words unless specifically asked. Inundating a person with suggestions can hinder the individual’s ability to articulate their thoughts effectively.
SUE: My computer keeps substituting words. Actually people do the same thing. Suggesting words when I can’t find one. It’s bad enough that I can’t find the right word without people raining down words on me.
JOE: What would you like people to do when you can’t find a word?
SUE: JUST GIVE ME A MINUTE!
Avoid Taking Over Tasks:
Resist the urge to take over tasks from individuals with dementia, as it may unintentionally undermine their independence and sense of purpose.
“Dear care partners,
I just wanted to say thank you for everything you do. You are caring, compassionate and I appreciate everything you do for me.
I wish I could help you more. I wish I could bath myself independently and walk around the building on my own. Oh what it would be like to do things all by myself, be independent. I really like to do things on my own and I would like to try and do a little more.
Maybe it can make things easier for you too? I also know you are very busy. Always so much to do and many other people who also need your help.
What I was hoping to ask from you is a little bit more time. If I can have a bit more time, I might be able to help you by getting myself dressed and maybe even get myself to the dining room. I just need you to give me a little extra time, that way, I can help you too.”
– Anonymous long-term care resident
What you can do, however, is provide additional time and support. Doing so allows individuals with dementia to maintain their autonomy and contribute meaningfully to their families and communities.
Managing Frustration:
Just as with most people, individuals with dementia may experience frustration when not given adequate time or support to express themselves or complete a task.
“I am thankful for the care partners who are patient with me especially during my times of frustration and anger. Thank you for understanding the challenges I face and the feelings which I sometimes express as I’m sure you do too in times of frustration! As a human being, these feeling are a natural part of life and I thank you for your kindness and patience.”
– Anonymous long-term care resident
Take the time to empathize and understand their perspective, working together to find solutions rather than resorting to quick fixes. People living with dementia want you to know that your efforts are recognized and appreciated!
The Final Word
By practicing patience and understanding, we can create a more inclusive environment for individuals living with dementia. Slowing down and giving a minute not only fosters meaningful connections but also supports individuals in maintaining their dignity and purpose in life. As shared by participants in the To Whom I May Concern program, these small acts of patience can lead to significant positive outcomes for individuals living with dementia.
“I’m busy learning new things. I know people think that you don’t learn new things when you are living with cognitive loss, but I’m here to tell you that you can! I’m learning new things every day. I’m learning my new neighborhood, I’m learning to live independently, and I’m learning how to ask for what I need to maintain my dignity and my purpose.”
– Pat
