11 Things People Living with Dementia Want You to Know
To help bridge the gap, we sought insights from individuals living with dementia about what they wish their care partners understood.
Have you noticed that many dementia care conferences and events often lack the presence of those actually living with dementia?
Why is it that discussions about dementia frequently exclude the very people experiencing it, failing to seek their insights and needs?
Yes, dementia affects abilities over time. Yet, individuals with dementia are rarely consulted for their perspectives, regardless of their condition’s stage.
This oversight results in missed opportunities to learn from one another and enhance lives. To address this, we consulted people who are living with dementia to understand what they want care partners to know.
Here are some key takeaways:
- It’s not just an older person’s disease
At the time of writing, over 100 types of dementia exist. Some, like Younger-Onset Alzheimer’s and Frontotemporal Dementia (FTD), can affect people in their 30s, 40s, or 50s. - I’m still here, I’m still me, and I can do things
Treat people with the respect and dignity they deserve. Despite brain changes, individuals with dementia retain their rights to be treated as adults. - I’m not a child; don’t treat me that way
A dementia diagnosis doesn’t instantly strip someone of their abilities. Allow those with dementia to contribute for as long as possible and recognize them beyond the disease. - Don’t assume or prejudge what I’m saying
Give individuals with dementia more time to express themselves. Listen carefully without assuming their thoughts lack coherence. They deserve to be heard. - Give me an opportunity to participate
People with dementia often face exclusion. Offer them chances to engage and avoid sidelining them due to their condition. They may still find joy and connection in participating. - Accept each person and their abilities
Embrace everyone’s unique abilities. In dementia communities, accept each person for who they are and what they can contribute. Everyone has something to offer. - Be patient with us
Patience is key. Individuals with dementia can still accomplish tasks if given the chance. Support them by working with them, not just for them. - Don’t assume I have everything together
Sometimes appearances can be deceiving. Be observant and supportive, recognizing that respect is crucial. - Don’t assume I don’t understand
Avoid quick judgments about comprehension. Engage in conversation and give time for responses, ensuring not to jump to conclusions. - Talk to me, rather than about me
Engage directly with those living with dementia rather than talking about them. Involve them in conversations to show respect and inclusion. - The more you know and understand, the better you can help
This applies to everyone, not just care partners. Knowledge about dementia and the individual’s experience enables better support and helps them live their best life.
Conclusion
A recurring theme in these points is to avoid making assumptions. The best way to do this is by including people with dementia in our conversations. As they aptly put it, “Nothing about us, without us.” Including their voices helps prevent assumptions and enables us to provide meaningful care and improve their quality of life.