Lewy Body Dementia Awareness Week 2023

This week is Lewy Body Dementia Awareness Week. Also known as LBD or dementia with Lewy bodies, it is estimated that for every 100 people who are diagnosed with dementia, between 10 and 15 of these will have dementia with Lewy bodies (Alzheimer’s Research UK, 2021). The main aim of this week is to raise awareness of Lewy body dementia and is a campaign run by The Lewy Body Society. Lewy body dementia is caused by clumps of protein forming inside brain cells, these abnormal deposits are called Lewy bodies. Lewy bodies also can develop in Parkinson’s, and both Parkinson’s and Lewy body dementia fall under the umbrella term of Lewy body disease.

Symptoms of Lewy Body Dementia

Like with any dementia, symptoms will vary on an individual basis. Symptoms of Lewy body dementia can be but are not limited to problems with attention and mental abilities such as difficulties with visual perception, hallucinations or delusions, difficulties with movement such as slow and stiff movement, problems with sleep and problems with how the body functions such as low blood pressure or contingence issues. Support is available to help with the management of these symptoms.

Misdiagnosis happens

Often, due to there being no formal assessment for Lewy body dementia and the condition can present differently in individuals, it can be misdiagnosed as Parkinson’s due to the similarities in symptoms, another form of dementia like Alzheimer’s or mixed dementia which can occur when a person develops more than one type of dementia. One such famous incident of this is the late Robin Williams, who was not diagnosed with the condition until after his death. In 2020, a documentary entitled Robin’s Wish looking into the actor’s life and how Lewy body dementia impacted his career was released to both raise awareness and show the impact of Lewy body dementia. You can watch the trailer for this here: Robin’s Wish | Official Trailer (HD) | Vertical Entertainment – YouTube

You Are Not Alone

Remember, you are not alone. If you have concerns about your memory, care for someone with dementia or are looking for additional information and advice the Dementia Hwb is here for you. You can visit the Hwb 7 days a week between 11am-3pm, call us on 01792 304519 or email us on support@dementiafriendlyswansea.org. We can also offer memory assessments with the Community Memory Support Team for Swansea Bay University Health Board. This is not a diagnosis but instead designed for people without a diagnosis who are worried about their memory to see if they need further referral to a GP or alternate memory test.

Other useful organisations:

The Lewy Body Society’s goal is to fund research into Lewy body dementia and raise awareness of the condition through the public or through education of medical professionals and those involved with decision-making care.
Telephone: 01942 14000 Email: info@lewybody.org

Parkinson’s UK provides support and information to those living with Parkinson’s. They can offer practical support for families and those with Parkinson’s as well as fundraising research and raisie awareness to ensure individuals are living well. Their service covers 170 languages, free and confidential support and they can put people in touch with the branch closest to them.
Telephone 08088 000303 Email: hello@parkinsons.org.uk

The Lewy Body Support Network UK is a community-led organisation that can offer peer support, professional support and up to date information or signposting. As well as the information below, they also have a private Facebook support group that can be accessed by those affected by any Lewy body disorder.
Email: info@lbsnuk.org

Article by Kayleigh Phillips