Information leaflets

Resources

We have created and collated a range of resources that can help you, or your loved ones, to understand Lewy body dementia better.

All printed copies of Lewy Body Society materials are available free of charge to individuals. The Guide to Lewy body dementia is available at £2 per copy for professionals and institutions. This covers printing and postage costs and allows us to continue providing it free to families affected by Lewy body dementia.

Please contact us to order

Websites

Gov.uk

NHS

Dementia Roadmap

The Dementia Roadmap provides high quality information about the dementia journey alongside local information about services, support groups and care pathways to assist primary care staff to more effectively support people with dementia and cognitive impairment, their families and carers.

Brain Facts

A public information initiative of global not-for-profit organisations dedicated to advancing brain research.

Parkinson’s UK

As parkinsonism is a core feature of Lewy body dementia, many are misdiagnosed as having Parkinson’s. Parkinson’s UK offers support for patients and carers, including excellent advice on coping with daily activities and information on Lewy body dementia

The Alzheimer’s Society

020 7423 3500
Helpline: 0300 222 11 22

The Alzheimer’s Society provides a wide range of information on all aspects of dementia, including caring for someone with dementia. They also provide a range of local services.

Alzheimer Scotland

0131 243 1453
24 hour Helpline: 0808 808 3000

Alzheimer Scotland is the leading dementia organisation in Scotland. It campaigns for the rights of people with dementia and their families and provides an extensive range of support services.

Alzheimer’s Disease International

020 7981 0880

Alzheimer’s Disease International (ADI) works locally, by empowering Alzheimer associations in each country to promote and offer care and support for people with dementia and their carers, while working globally to focus attention on dementia.

Dementia UK

0845 257 9406 or email direct@dementiauk.org

Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. It provides Admiral Nurses, specialist dementia nurses who provide practical and emotional support to family carers of people with dementia, and Admiral Nursing DIRECT, a telephone and email helpline run by experienced Admiral Nurses.

Alzheimer’s Research UK

0300 111 5555

The UK’s leading research charity for dementia, dedicated to funding scientific studies to find ways to treat, cure or prevent all dementias. They provide a booklet on dementia with Lewy bodies.

Lewy body Dementia Association

Our associate organisation in the USA is dedicated to raising awareness of Lewy body dementia, supporting people with Lewy body dementia, their families and caregivers and promoting scientific advances.

Giving Voice for People with Dementia

People with dementia and their carers have a range of needs in communication, safe eating and drinking which should be met by individuals with the appropriate clinical expertise or those who have been trained by people with that expertise.

Alzheimer Europe

Based in Luxembourg, this is a federation of national Alzheimer’s societies which aims to raise awareness of Alzheimer’s disease and other dementias through cooperative effort. The website also offers useful tips for carers.

UK Care Guide

UK Care Guide has produced an infographic with tips on how to live well with dementia. It covers lots of areas, such as coping at home, legal and financial matters, and finding care and support. You can view the infographic and read the website here.

Living well with Lewy body dementia

Blog written by Ken Clasper about living with dementia with Lewy bodies.

(Dementia Just Ain’t) Sexy

Blog written by Ming Ho about the impact of dementia on those who live with it.

Creating life with words: Inspiration, Love and Truth

Blog written by Kate Swaffer, an Australian who has dementia.

D4Dementia

Blog written by Beth Britton, dementia campaigner, care consultant and freelance writer.

TommyonTour

Blog written by Tommy Whitelaw, based in Glasgow, who cared for his mother who had vascular dementia. He collects the stories of dementia carers to raise awareness among health and social care professionals.

Books

What are Lewy bodies? is a new book by award-winning author Alex Winstanley aimed at children aged 5-11.
Kevin Quaid author of this book was diagnosed with Lewy body dementia when he was 53 years old having been diagnosed with Parkinson’s Disease two years earlier
We’ve given our popular publication A guide to Lewy body dementia an update and refresh. This booklet provides an introduction to the disease including what you might expect when seeking a diagnosis and what treatments are available.
The Gift of Time is a moving and informative new book written by a local minister, the Revd Canon Pat Prestney, which tells a tale of love, hope, faith and a cocktail of medication that truly gave a dying man and his family The precious Gift of Time.
Although this book has be around for several years and we list it in our Books Section.
If you are looking for a guide to Lewy body dementias, Dementia with Lewy Bodies and Parkinson’s Disease Dementia: Patient, Family, and Clinician Working Together for Better Outcomes written by Dr. J. Eric Ahlskog may be of interest.
Written in 2012 by physiotherapist Judy Towne Jennings, this comprehensive guide benefits from professional and personal experience of Dementia with Lewy Bodies.
Rita Heap, died of Lewy body dementia on 15th October 2012. During her first year in residential care she wrote her life story.
Jenny Thomas wanted to write about a person who has a disease which slowly destroys the ability to communicate or recognise anyone