Please note: all telephone numbers are in the UK (international dialing code 0044).This page was last updated 20 May 2013.
Alzheimer's disease is the leading cause of aged-related dementia. Although Dr Alzheimer made his discovery 100 years ago, until the 1980s most people had not heard of it. Now everyone knows about it. A goal of the Lewy Body Society is for dementia with Lewy bodies (DLB) to achieve the same level of name recognition as Alzheimer's disease. Alzheimer's societies serve all people with dementia and are an excellent source of information for patients and caregivers.
DLB has much in common with the root cause of Parkinson's Disease, so the Lewy Body Society and Parkinson's UK are working in partnership to raise awareness of the Lewy body dementias (Parkinson's dementia and dementia with Lewy bodies).
The links to other groups are organised as follows:
- Charities
- Information for carers
- Blogs
- Government and NHS resources
- Books
- Videos
- Other sources of information and support
CHARITIES
Parkinson's UK
020 7931 8080
Helpline: 0808 800 0303
As Parkinsonism is a core feature of DLB, many people with DLB are misdiagnosed as having Parkinson's Disease. Parkinson's UK offers support for patients and carers, including excellent advice on coping with daily activities. The charity has a range of information on Lewy body dementias and, through a partnership arrangement with the Lewy Body Society, answers our helpline calls.
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
Scotland's leading dementia charity, Alzheimer Scotland helps people with dementia, their careers and families. Members include carers, relatives, people with dementia and organisations throughout Scotland.
Alzheimer's Disease International
020 7981 0880
Dementia UK
Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. The charity has four core areas:
Admiral Nurses: specialist mental health nurses who provide practical and emotional support to family carers of people with dementia;
Admiral Nursing DIRECT: a telephone and email helpline, provided by experienced Admiral Nurses. Call 0845 257 9406 or email direct@dementiauk.org;
Dementia UK Training, which provides high quality training courses for those who work with older people and people with dementia;
Uniting Carers: a national network of carers, former carers, family and friends of people affected by dementia.
Alzheimer's Research UK 01223 843899
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.
The Lewy Body Dementia Association
The very informative DLB-specific website of our associate organisation in the USA
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.
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Information for Carers
Dementia Challengers
Website set up and run by dementia carers for dementia carers.
Dementia Journeys
A Forum that aims to: provide a safe place for patients and carers to share their thoughts, feelings and experiences of their Dementia Journey; attract experts relating to the Dementia Journey to share their knowledge and experience with members; facilitate friendships by making the forum…A place of peace, respect, listening, positive contributions and of course…smiles, love and laughter;
Age UK aims to improve later life for everyone through information and advice, services, campaigns, products, training and research. You may find their information on Social care and support - where to start of help. They also offer local groups and a range of local services.
Carers Trust is a charity which was formed by the merger of The Princess Royal Trust for Carers and Crossroads Care in 2012. Carers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. With its Network Partners, Carers Trust aims to ensure that information, advice and practical support are available to all carers across the UK. They provide a database of local carer services.
Carers UK
Phone: 0808 808 7777 Email: adviceline@carersuk.org
Carers UK provides information and advice about caring alongside practical and emotional support for carers. The charity also campaigns to make life better for carers and influences policy makers, employers and service providers, to help them improve carers' lives.
Carers Direct
This is the NHS advice service for carers, with a website covering all aspects of caring. There is also a free, confidential information and adviceline for carers on 0808 802 0202, which offers a callback service and access in 170 different languages.
Elefriends
A supportive online community where you can be yourself. We all know what it's like to struggle sometimes, but now there's a safe place to listen, share and be heard. (Run by Mind Charity)
Guideposts Trust and Dementia web
Guideposts Trust provides direct services for people with dementia, those with or recovering from mental health problems and those with learning disabilities. The organisation provides an all-age dementia information resource called Dementia web which aims to help people with dementia, their carers and health professionals find empowering information about dementia and the support and care services available to them in the UK.
Independent Age
Advice line on 0845 262 1863 (Monday to Friday 10am-4pm) Email: advice@independentage.org
Independent Age provides a range of services to help alleviate feelings of isolation and loneliness experienced by many older people. Their visiting and telephone-conversation activities are designed to give older people a variety of methods to boost contact with other people and reduce isolation. The charity provides a national advice service for older people their families and carers focusing on social care, welfare benefits, befriending services and other social support.
Care to be different
A specialist information resource providing practical tips and advice about NHS Continuing Healthcare. N.B. This is not a charity/statutory information service - some services are charged for.
Lewy Body Carers Group
An online support and information group for people whose loved ones suffer from Lewy Body Dementia.
Lewy's Lieutenants
A community support group for North Somerset, set up in 2011 and based in Weston Super Mare. They set up a blog and embarked on a set of fundraising activities.
My Ageing Parent
Set up to help children support their parents as they become older.
When They Get Older
Website that aims to share ideas to help family members help their older relatives.
Elderly Accommodation Counsel (EAC)
National charity that aims to help older people and their loved ones make informed choices about meeting their housing and care needs. It offers the following services:
- FirstStop Advice:an independent, free service providing advice and information for older people, their families and carers about care and housing options in later life. Freephone 0800 377 7070, 9am to 5pm, Monday – Friday Email: info@firststopadvice.org.uk
- Housing and care options website offering comprehensive, easy to find, information on all aspects of care, support and housing for older people.
Relatives & Residents Association
Exists for older people needing, or living in, residential care and the families and friends left behind at home.
Holidays for people with dementia and their companions listed at Tourism for All.
Life Story Network
Organisation that promotes the value of using life stories to improve the quality of life and wellbeing of people marginalised or made vulnerable through ill health or disability, including dementia. Life stories enable care staff to grasp 'who' the person with dementia really is, in order to provide more person-centred care.
Blogs
Lewy Body Journey
A wife writes of her experiences of her husband's dementia with Lewy bodies
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. Tommy collects the life stories of dementia carers to raise awareness amongst health and social care professionals on both dementia and caring.
Government & NHS Information
NHS Choices pages on dementia.
Gov.uk pages on dementia
Our Health - Dementia Care
Web portal developed for the South of England but with good general information about dementia and dementia services
Dementia Partnerships
Provides resources for people, partnerships and networks working to improve outcomes for people living with dementia
NHS Institute for Innovation and Improvement has a series of free web seminars as part of their commitment to improving the health and social care for people with dementia.
Books
A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth and James A. Whitworth
Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer's, and Parkinson's Disease by Pat Snyder
Cando Books, ''Living with Lewy's; Empowering Today's Dementia Caregiver'
Living with Dementia: A Caregiver's Journey by Bishop Philip Weeks, who tells of his experience as a caregiver for his wife diagnosed having Alzheimer Disease in 2002, and later diagnosed with Lewy Body Dementia. Without any warning or training in how to care for her, he tried first doing it alone, then Adult Day Care, and finally home care with Care Providers. He shares his failures and victories, and how caregiving has helped mature him into being a better person and more loving husband.
Amazon Books, ''Over Streams and Squirrel Woods by Alys Williams' is based on the personal diary kept by a loving daughter caring for her mother as they journeyed through the mother's struggle and decline with Lewy Body Dementia .
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A Misted Mirror by Gillian Jones is a novel inspired by her late husband Keith's Parkinson's with dementia and his poetry.
Dementia Support for Family and Friends by Dave Puslford and Rachel Thompson
Telling Tales About Dementia edited by Lucy Whitman
Book reviews on the Dementia UK website
Videos and video clips
Bob And Jo's Story is a YouTube video from Alzheimer's Society that supports honest conversation about changes in relationships after a diagnosis of dementia. Visit Alzheimer's Society videos and podcasts centre for more audio and visual material on living with dementia.
For a moving demonstration of how to connect with someone with advanced dementia, watch Naomi Feil and Gladys Wilson.
For a demonstration of the power of music and the importance of understanding someone's Life Story, watch Henry's story from 'Alive inside' Music and Memory Project
Alzheimer Scotland, 'Essential Conversations: Talking about death and dementia (2011) a resource for health and social care professionals and also family carers.
Other Sources of Information and Support
CANDID (Counselling and Diagnosis in Dementia)
020 7829 8773
A service of the Dementia Research Group at the National Hospital for Neurology and Neurosurgery, providing information and support for people with dementia and their carers.
Counselling Directory
Tel: 0844 8030 240
The Counselling Directory was set up to connect visitors with a wealth of information and the ability to search for the most suitable counsellor or psychotherapist. If you're not sure where to start, click the badge to view our site help section.
Dementia Care Matters
01273 242335
An independent team specialising in working with organisations and their staff in developing Dementia Care Services & Mental Health Services for Older People.
Dementia and Elderly Care News: an information portal about research, policy and service developments in dementia and the care of older people.
European Parkinson's Disease Association
A federation of European PD societies throughout Europe, with its secretariat in the UK.
The National Institutes of Health (USA)
Medline Plus
National Institute of Neurological Disorders and Stroke
These are two excellent sites all about Dementia with Lewy bodies.
National Society for Palliative Care
020 7697 1520
An umbrella organisation for all those in the UK dealing with and using hospice care. The Council recently issued a discussion document on palliative care for people with dementia.
