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What you wish you'd known before diagnosis - Dementia Action Week 2022

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Registered User
Jan 2, 2020
So much truth here.

I would add: don’t ever think that you are the only person who can look after the PWD, no matter what your relationship to them. Start to share care in whatever way you can (with friends, family , carers …..) as soon as possible. It will be enriching for everyone and stop you sacrificing your whole life (and then resenting that). Don’t reject the possibility of a care home when it becomes impossible 24/7.

This also means being honest and telling other people about the diagnosis. Don’t be ashamed. Yet, at the same time, don’t discuss the diagnosis much with the PWD - use euphemisms and white lies to avoid distressing them (and you). Angrily denying a diagnosis is very common among people with dementia . I get the impression that those who knowingly accept it and live happily with it are unusual (and some may not have dementia but FND). By the same token get a full and proper diagnosis and don’t assume anything. Lots of conditions can cause dementia-like symptoms. Use ‘compassionate communication’ and simplify the home environment to remove problems. Lock dangerous, important stuff away out of reach.

I also wish I had known more about the psychiatric treatments of dementia and in particular the impact of antipsychotics.

Finally - there is very little help out there so don’t wait for it to find you, go out and look for it. If the GP isn’t helpful find the local carers’ centre and just keep asking (including on here).


Staff member
Apr 29, 2014
We'd like to thank each and every one of you who shared your thoughts on this. They were very poignant to read through, and will be incredibly helpful for people facing a diagnosis in the future.

I'll close this thread now :)
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