Dementia and people with profound learning disabilities

Can you help?

We are looking for information about dementia in people with profound and multiple learning disabilities, especially around the issues of assessment and diagnosis and then late stage support.

We would be really grateful to hear people’s experiences and/or any signposting to resources, organisations or services for us to share with PMLD LINK community . Very Very many thanks, Annie

Hi Annie, there are a few assessment tools that can be used with people with profound and multiple learning disabilities. The joint BPS and RCPSYCH guidelines (2015) should help point you in the right direction

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Thanks for this valuable suggestion Deidre - I’ll be sure to check it out asap!

Hi Annie
The best resources are with Macintyre and work of Karen Watchman.

Caroline B

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Hi Caroline - thanks so much for taking the time to signpost me to these valuable sources of information.
I had MacIntyre’s work generally on my radar (awaiting their reply) but not so Karen Watchman. The links to both sources are just so helpful - I feel better informed already!
Many many thanks again!

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Hi, let me know if you still need resources and I’ll try to support.

Best wishes


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Absolutely - yes please Jane!
So many of my enquiries to organisations and specialists have gone into a black hole :frowning_face:
The fabulous folks on this forum have generously shared and signposted some brilliant resources but getting GPs or others to acknowledge dementia in this population is still a huge challenge. So the more informed we are the better support we can offer to tackle these inequities.
Thanks for your reply! Annie