Living with DLB or another type of dementia can present challenges, but there are organisations that offer help and support. If your partner or loved one has DLB, it can be challenging. It is important to make time in the week to do things for yourself, and spend time with friends, as well as your partner or loved one.

The Lewy Body Society provide support and advice for people with DLB, their families and carers. You can find information at www.lewybody.org

Helpline support, offering practical tips and medical advice is provided by Admiral Nurses on 0800 888 6678 or helpline@dementiauk.org

Parkinson’s UK also provide information and support about DLB and PDD. Visit www.parkinsons.org.uk or contact them on 0808 800 0303 or hello@parkinsons.org.uk

For contact details of other organisations offering support and advice visit our page support for people affected by dementia.

You can also speak to your doctor or nurse about local support services for people with dementia.

 

Des

I try to take things more gently and try to avoid stress rather than welcome it. It’s good to have a quiet spot in your life to have a place you can retreat to – a place to retire to and spend time in. Meditation and mindfulness practices help me a lot.

I feel a lot better in myself these days. I feel that I’m in a new period and a new chapter.

- Des, who lives with dementia with Lewy bodies

Support for people affected by dementia

This booklet is for people affected by dementia, including family, friends and carers. It lists organisations offering help, advice, information and support.

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Order health information

Alzheimer’s Research UK has a wide range of information about dementia. Order booklets or download them from our online form.

This information was updated in December 2023 and is due to be reviewed in December 2025. It was written by Alzheimer’s Research UK’s Information Services team with input from lay and expert reviewers. Please get in touch if you’d like a version with references or in a different format.

 

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Dementia Research Infoline

Want to know more about dementia? Keen to find out how you can get involved in research?

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infoline@alzheimersresearchuk.org