Share your experiences

In January 2024 we ran a month-long campaign across the Young Dementia Network communications platforms (email, website and social media) inviting members and followers to ‘share their experiences’ of young onset dementia.

We asked people to reply to three questions:

• Do you feel that young onset dementia has taken anything away from your life?
• Has receiving a diagnosis brought any comfort to you or your family members and friends?
• What are the young onset dementia symptoms that most significantly affect your daily life?

We were overwhelmed by the number of responses we received in a four-week period:

• 185 people replied
• 59 were people with young onset dementia; 126 were family or friends
• 90% of respondents gave us permission to share their words
• 80%  shared their email addresses and agreed to be contacted to share their story in more detail

We have compiled the most common themes from the answers, as well as a selection of quotes, into a summary document which you can read here.

We have also created a short animation, sharing some of the real-life stories that we received in response to question one, which asked whether young onset dementia had taken anything away from your life. You can view the animation below.

We are very grateful to everyone who took the time to take part and shared their experiences to help others. Thank you all.