Change and loss in our online community

Read how people get different kinds of support from our online community throughout the dementia journey.

People’s needs change as dementia progresses, so you’ll probably need different information and types of support over time. Carers can find it challenging to adjust to changes in behaviour, how much the person can do themselves and how this affects your relationship. 

Many of these changes can involve a sense of loss. You may have to deal with different feelings of loss at various stages, the biggest being when someone dies. 

Talking Point, our online community, includes people living through all of these developments and every aspect of dementia. How they take part in and get support from the community can also change, depending on what they're going through at the time. 


When you lose someone, it can feel like your whole world has changed. However, sharing experiences and advice online can still make a difference. 

One longstanding Talking Point member had been documenting what life was like caring for her husband, similar to a diary. After her husband died, she created a new thread on the community, this time writing about how she was adjusting to life after loss. 

Another member chose to continue her existing thread, with the title slightly changed, after her partner’s death. In this way, she kept people who had followed her journey updated, as members supported her through preparing for the funeral and dealing with her grief. 


Talking Point includes forums for people dealing with specific situations. There is a dedicated forum for people who have lost the person they were caring for, where members support each other. No matter how isolated you feel, there will always be people who understand. 

Whatever change you may be going through, having this space online means you can talk to others in similar situations, ask questions, share experiences and know that you are not alone.

Next steps

Dementia together magazine: Feb/Mar 18

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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More from Dementia together magazine: Feb/Mar 18:
Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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