Many people with young-onset dementia and their families tell us that friends, colleagues, or even professionals treat them differently after a diagnosis. While most people are supportive, others may act awkwardly, avoid contact, or talk about dementia in unhelpful ways. These reactions often come from uncertainty or misunderstanding rather than bad intentions, but they can still hurt.
When others treat you differently
Sometimes people talk to the carer instead of the person with dementia, even when the person with dementia is in the room. This can make the person feel invisible or ignored. In situations like these, Margaret either turns to John and gestures for him to answer or says, “John can answer that question himself.”
At other times, friends might stop calling or inviting you to activities you used to share. This can feel isolating for both of you. Often, people simply don’t know how to act. Reaching out, explaining what’s changed (and what hasn’t) can help others feel more comfortable. Some people also find new friendships through dementia support groups, community programs, or online spaces.
If you are left out of a group or activity, it’s okay to advocate for inclusion. Many organisers are simply unaware that small adjustments can make participation easier. For instance, Alan had someone help keep score at golf, and Christine arranged for another club member to drive her to meetings after she gave up driving.
Combating stigma
Stigma happens when people make assumptions or behave negatively because of the dementia diagnosis. Naming stigma when you see it, and having a plan for how to respond, can make a big difference. You might:
- Choose to correct misconceptions gently.
- Ask a trusted friend to speak up or advocate for you.
- Share educational resources (for example, from this website or Dementia Australia).
It can also help to talk about your experiences with others who understand. Peer groups for people with young-onset dementia or for carers can provide empathy and practical ideas.
Try a reflective exercise to help you know how to combat stigma
Identify a time you may have felt you we treated differently, because you, or the person you support has dementia. Use tips on this page and ask peers to work out how you could respond to combat stigma.
Use strategies in 2.8 Sharing the diagnosis with family and friends to advocate for inclusion.
Photo: Cristina Gottardi via Unsplash.
