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

Since our campaign ended, we have been working hard to analyse the responses so that we can share the most common themes and issues that people told us about.

We have selected some powerful quotes and will be sharing them on our social media channels very soon.

And we have used five of the responses to our first question about the impact of young onset dementia to provide real-life examples for an animation we are creating.

We will share the animation and social media posts with you soon and are very grateful to everyone who took the time to take part and shared their experiences to help others.