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Rarer dementias and getting the support you need online

Rare Dementia Support and Talking Point, our online community, provide virtual ways for people with rarer 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 the people you come across are 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 atypical Alzheimer’s disease, Parkinson’s disease dementia or one of many other diagnoses.

There are a number of different support options available to help people with rarer types of dementia through Rare Dementia Support (RDS) and Alzheimer's Society's online community Talking Point.

Getting the support you need

Rare Dementia Support run specialist support services for people who are living with or affected by one of seven rare dementia diagnoses:

  • Familial Alzheimer’s disease (fAD)
  • Familial frontotemporal dementia (fFTD)
  • Frontotemporal dementia (FTD)
  • Lewy body dementia (LBD)
  • Posterior cortical atrophy (PCA)
  • Primary progressive aphasia (PPA)
  • Young-onset Alzheimer’s disease (YOAD).

They host groups and meetings to bring people together to share their experiences virtually and in-person across the UK. They also provide one-to-one support, peer support groups, plus research and creative opportunities

Rare Dementia Support publishes on their website information on upcoming meetings, news and activities, stories from community members, professional advice and research opportunities.

Nikki Zimmermann, Direct Support Lead at Rare Dementia Support, shares the important benefits of talking with others that have lived experience:

'Having a diagnosis of a rare dementia brings a unique and complex set of challenges.

'It is vitally important that you and your loved ones are adequately informed by the expert advice from the RDS team and it can have huge benefits talking to others in similar situations.

Having a rare dementia or caring for a loved one with a rare dementia can be immensely isolating.

'By speaking to others you can feel less alone, you can feel others really understand what you are experiencing and can share coping strategies and tips to benefit all affected and live more fulfilled lives.'

Being there for each other

Alzheimer's Society's online community, 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 are more likely to meet someone else who is affected by a rarer type of dementia than you are by chance through a local group or network. 

Even if there isn’t already someone on 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, Talking Point is full of people pulling together to create a supportive place for all.

Day-to-day realities 

Our online 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 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. 

Get support online

Become part of the community through Rare Dementia Support and Alzheimer’s Society’s Talking Point.

Visit Rare Dementia Support Visit Talking Point

This article was first published in June 2019 and most recently updated in February 2022.

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6 comments

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I .think that the should get the right support

I don’t know what type of dementia I have got i was told but I have forgot jimmy chers

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?

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

No help I can offer, but just great sympathy for your son and for you.
Would a very , very cold , or very very hot environment, associated with the nakedness create an unpleasant memory?

Hello. My brother was Down Syndrome, he sadly passed away 2 weeks ago. He had just turned 50. He was officially diagnosed with Dementia in late 2019 and also had sensory overload to touch, and hearing. I don't have any experience of what you have described and I'm not sure if meds will help or cause unneeded side effects (which drugs don't have side affects nowadays), but I had my brother taken off anti-psychotics which were prescribed one after another (Haloperidol, Trazodone, Risperidone, Quetiapine), they did nothing but cause severe adverse reactions with screaming and wailing, and they basically destroyed his mobility prior to Dementia inevitably taking it away. I think he had Lewy Bodies Dementia but over the years every Dr I mentioned it to just looked at me with a blank stare. My brother had Dysphagia too and despite being on level 4 puree & thickened fluids I would sometimes see a carer not feeding my brother in the optimal upright position.. Cause of death: Pneumonia (likely from aspiration) and severe Sepsis. I don't care what CQC ratings care/nursing homes have got, I've seen enough to know not every carer is diligent to follow a care plan.

I would try and find a strategy rather than medication. What about trying softer cotton materials, or a body emolient? Sorry I can't be more helpful.

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