The Lewy Body Society

Founded in 2006, the Lewy Body Society is the only organisation in Europe dedicated exclusively to LBD. The charity’s mission is two-fold: (1) to raise awareness of the disease amongst the general public and educate medical professionals and decision-makers and (2) to support research into the disease.

Updated:
20 September 2017
Location:
National
Sectors:
Health, Medical, Voluntary Sector, Charity, Care, Local DAA Members, Research Sector
Local Alliances:
Wigan Dementia Action Alliance

1. Action Plan

1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

The Lewy Body Society's mission is two-fold:

(1) to raise awareness and understanding of Lewy body dementia  amongst the general public and to educate medical professionals and decision-makers.

(2) to support and fund research into the disease.

2. What are the challenges to delivering these outcomes from the perspective of your organisation?

The main challenge is the predominance of memory-focused descriptions of dementia, as this can lead to a public perception of dementia and Alzheimer's as synonymous. Where there is a lack of awareness of the symptoms of Lewy body dementias, people can be denied appropriate treatment and support. People can be prescribed the wrong medication which impacts the quality of life for the person with dementia and their family.

Member website

http://www.lewybody.org/

2. Actions

  • Providing information about Lewy body dementias

    Producing and keeping up-to-date online and hard-copy information resources about Lewy body dementias, for people living with dementia, carers and medical professionals.

    Status:
    Delivered

    2017 - Second Quarter Update

    Updated information about dementia on The Lewy Body Society website:  http://www.lewybody.org/resources/

    Resources can be downlowded or ordered via the society's website   

    http://www.lewybody.org/resources/

  • Undertaking and funding research

    Undertaking research about how we can better engage with and support people from marginalised groups, including people with Parkinson's disease dementia

    Status:
    Delivery

    2014 - Third Quarter Update

    Reported findings from research, funded by the Lewy Body Society through Parkinson's UK's Innovation Grants Scheme into the genes involved in dementia with Lewy bodies:

    http://www.parkinsons.org.uk/news/7-july-2014/unique-genes-involved-lewy-body-dementia

    2012 - Third Quarter Update

    In progress (not in quarterly report of DAA)

    2012 - Second Quarter Update

    In progress (not directly mentioned) 

    2012 - First Quarter Update

    In progress (not directly mentioned)

  • Development of national guidelines

    Influencing the development of national guidelines and indicators for care of people living with lewy body dementia.

    Status:
    Delivery

    2017 - Second Quarter Update

    A specialist Advisory body has been established by The Lewy Body Society made up of acdemics, researchers,medical professionals and Prof Alistair Burns National Clinical Director for Dementia in England.

    2012 - Third Quarter Update

    In progress (not in quarterly report of DAA)

    2012 - Second Quarter Update

    Partnership and Engagement Officer to lead work on raising awareness of Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD) – a joint appointment with the Lewy Body Society -- began work in February 2012.

    o Work has begun on gathering information for the 2013 revision of Parkinson’s UK’s information resources for people affected by PDD and DLB.

    o Participating in James Lind Alliance dementia research priority setting exercise.

    o Submitted joint response with Lewy Body Society to NICE scoping for consultation on Social Care Standard on Care of People with Dementia (April 2012)

    o NICE has confirmed that the guideline for Parkinson’s will be reviewed following submissions from Parkinson’s UK and other parties. We will use this opportunity along with the development of NICE Quality Standards to raise issues around Parkinson’s disease dementia and dementia with Lewy bodies.

    o Working with Dementia UK to revise internal training on DLB/PDD for staff who provide direct support to people affected by dementia and those who educate health and social care staff due for roll-out in October 2012.)  

    2012 - First Quarter Update

    Parkinson's UK are working with the Lewy Body Society and have employed a Senior Education and Partnerships Officer, a jointly funded post, who will be starting in post in the later part of February. She will be working on developing and implementing approaches to ensure effective care and support for people with dementia with Lewy bodies, working in partnership with the Lewy Body Society. It will also involve establishing an advisory body for dementia with Lewy bodies that can steer the work of the Lewy Body Society and act as an

    advisory group within Parkinson’s UK, involving expert professionals and people affected. Lastly they will work through the advisory group, develop and implement a business plan to improve treatment, care and support people who have dementia with Lewy bodies, embedding this work wherever appropriate in the relevant function of Parkinson’s UK. 

  • Using relevant training opportunities

    Using relevant training opportunities to highlight issues relating to Lewy body dementia.

    Status:
    Delivery

    2017 - Second Quarter Update

    Making contact with CCGs to offer infimration and speakers to attend and speak to staff on their training courses.

    2012 - Third Quarter Update

    In progress (not in quarterly report of DAA)

    2012 - Second Quarter Update

    In progress (not directly mentioned) 

    2012 - First Quarter Update

    In progress (not directly mentioned)

  • Campaigning nationally and locally

    Campaigning nationally and locally for high quality services for people living with Lewy body dementia.

    Status:
    Delivery

    2017 - Second Quarter Update

    The society is encourgaing supporters to write to their MP for the price of a stamp.  A letter will be provided for supporters to use.  

    2012 - Third Quarter Update

    In progress (not in quarterly report of DAA)

    2012 - Second Quarter Update

    We aim to ensure that Lewy Body dementias are included in the national dementia awareness campaign planned for autumn 2012. 

    We have been campaigning for fair access to comprehensive, high quality Parkinson’s services across the UK. 

    2012 - First Quarter Update

    In progress (not directly mentioned)

  • Funding research

    Funding research into Lewy body dementia 

    Status:
    Delivery

    2017 - Second Quarter Update

    The society is currently funding 5 research projects and is working towards membership of the AMRC.

    2012 - Third Quarter Update

    In progress (not in quarterly report of DAA)

    2012 - Second Quarter Update

    Parkinson’s UK have provided the Research Grant administrative support for two ‘Innovation Grants’ for studies into Dementia with Lewy Bodies funded by Lewy Body Society. One study uses stem cells cultured to function like neurones in the cortex; the other is into the genetics of neurodegeneration. 

    Professor David Burn at the University of Newcastle is currently conducting a study funded by Parkinson’s UK entitled: ‘Does the Parkinson's drug apomorphine have 'anti-dementia effects'?. 

    2012 - First Quarter Update

    Parkinson’s UK are also supporting a new research project entitled “Does the drug apomorphine have ‘anti-dementia’ effects?”