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Rarer dementias: Getting the support you need on Dementia Talking Point

Dementia Talking Point, our online community, can help people with less common types of dementia to feel less isolated.

If you’re diagnosed with one of the less common causes of dementia, it may be harder to find people who understand the specifics of what you’re going through. 

If they’re mostly affected by Alzheimer’s, vascular dementia or both – even if they can relate to many aspects of your experiences – you might also want to connect with people who know what it’s like to live with your particular condition. 

This could be the case if you have frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy, Parkinson’s disease dementia or one of many other diagnoses. 

Being there 

Our online community, Dementia Talking Point, is all about helping you to connect with people who are experiencing similar things, so you can be there for each other. 

Online, you’re more likely to meet someone else who’s affected by Niemann-Pick disease type C, HIV-related cognitive impairment, corticobasal degeneration or another rarer dementia than you are by chance through a local group or network. 

Even if there isn’t already someone on Dementia Talking Point with your specific diagnosis, they might join after seeing that you’ve posted about it. In the meantime, people with a different dementia diagnosis may identify with what it’s like to have a rarer one. 

Other community members could also point to other useful ways to get support, and they might still share your experiences of more unusual symptoms and situations. Either way, Dementia Talking Point is full of people pulling together to create a supportive place for all. 

Day-to-day realities 

The community has a dedicated area for people who have a diagnosis. Here, you can talk about the day-to-day realities of managing your condition, share good and bad days, and feel understood. 

There’s also a place to talk privately about the more difficult challenges you face. For the days when you don’t feel like talking about dementia, there’s another area to simply talk about things you enjoy. 

There are plenty of people on the community who you can turn to. Other members on Dementia Talking Point will be understanding, answer questions and share their own experiences. You don’t have to feel alone in what you’re going through. 

Talking Point
Visit our online community to get advice, share experiences, connect.

Dementia together magazine: June/July 19

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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My fifty-year-old son has Down's Syndrome and now Alzheimer's. He's been moved to a lovely care home but is sadly going to have to move again as now he's developed sensory overload which means he can't bear to have ANY clothes touching him, and his nakedness causes many problems! I just wonder whether there's anyone out there who has experience of this combination of problems and can suggest any techniques or medication that would help him out of the present situation?

This is helpful

Hi Esmerelda,
I'm very sorry to hear about your son. If you call our helpline one of our advisers would be very happy to talk to you and offer advice.

Our Helpline is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm), and can be reached on 0300 222 11 22.

Thank you

This is helpful
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