We won't spend time, resources and money reinventing the wheel, so where support and information already exists, we'll simply signpost you to it.

Below you'll find some of the best places to find out more information and support services from UK-based organisations. We aim to ensure our signposting is as relevant and accurate as possible.

Please remember that any information you find on any of the linked websites is no substitute for professional medical advice and any medical decisions must be taken in discussion with appropriate health professionals.

Have you found a useful and relevant resource or source of information?

​Let us know.

Useful links

Lewy Body Society

The Lewy Body Society has a wealth of information on Lewy body disorder, its symptoms and treatment. There are a number of useful resources giving insight and advice on managing symptoms such as hallucinations and delusions.

Rare Dementia Support

The Direct Support Team at Rare Dementia Support (RDS) are available to offer information, advice and support. Only RDS members can access their support. ​To join, email the RDS team or leave a voicemail message on 020 3325 0828.

Dementia Carers Count

Dementia Carers Count (DCC) run a free support line from Mon-Fri 9am to 5pm, where people can access support and advice from their team, including trained healthcare professionals. 
​Call the DCC helpline on: 0800 652 1102.

Dementia UK

Dementia UK is the specialist dementia nurse charity. Their Admiral Nurses provide life-changing care for families affected by all forms of dementia, helping families manage complex needs. They can also advise other healthcare professionals. 

Alzheimer's Society

Alzheimer's Society has a wealth of information on living with dementia, navigating different care options and the financial support you may be able to access.

Mind

Mind provides useful information on matters relating to the Mental Health Act 1983 and Section 117 Aftercare, which can be relevant for people affected by LBD.

Parkinson's UK

Parkinson's UK has a wealth of information on the symptoms, management and treatment of Parkinson's, including thinking and memory changes.

Another Presence

'Another Presence' is a film created to recount the unique experiences and perceived reality of people living with dementia with Lewy bodies (DLB).

Your guide to Lewy bodies

Watch, read and download our plain language guide to the different conditions caused by Lewy bodies.

Join the Buddy Directory

The Buddy Directory is a secure online nationwide database of all our members. Join for free today.
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