Parkinson's UK

Parkinson’s UK is the Parkinson’s support and research charity. Our focus on Lewy body dementias (Parkinson’s dementia and dementia with Lewy bodies) touches on all our work including campaigning, expert information and support services, local support groups, specialist nurses, education for health and social care professionals and research.

Updated:
20 February 2017
Location:
National
Sectors:
Health, Care, Medical, Voluntary Sector, Charity, Research Sector

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?

Parkinson's UK works to increase understanding of Lewy body dementia - a type of dementia that combines thinking problems and parkinsonism (movement problems typical in Parkinson's). People with Parkinson's are particularly at risk of developing Lewy body dementia.

The charity's strategy is to galvanise the whole Parkinson's community to: 

Find better treatments and a cure - within our portfolio of Parkinson's research we support studies to understand the causes of Lewy body dementia, to identify who is likely to develop it and to identify drugs to treat itHelp people affected by Parkinson's to take control - our local advisers, free and confidential helpline, website, literature, peer support and self-management courses have information to enable people affected by Lewy body dementia to understand the condition and find help as their needs change over timeProvide access to quality services - through campaigning that draws on the experience of people affected by the condition, local service development, education and networks for health and care professionals, and a national audit of Parkinson's services we work to ensure that no one faces Parkinson's dementia and dementia with Lewy bodies alone.

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

The challenges for achieving better outcomes for people affected by Parkinson's dementia and dementia with Lewy bodies include the low level of recognition and understanding of this dementia subtype.

2. Actions

  • Awareness-raising and influencing work

    Awareness-raising and influencing work around the distinctive features of Parkinson's dementia and dementia with Lewy bodies, conveying the messages that not all dementias are the same and that service providers need to remember the Lewy Body Dementias.

    Status:
    Delivery

    2016 - Second Quarter Update

    Took part in Dementia Awareness Week, drawing attention to Lewy body dementia through social media see: http://tinyurl.com/hoeyjg8

    Exhibited at the Dementias Platform UK annual conference http://www.dementiasplatform.uk/event/dementias-platform-uk-annual-conference-2016/to raise awareness of dementia-related research in Parkinson's UK research portfolio

    Developing a simple test for Parkinson's dementia http://tinyurl.com/jxdq2ng

    2015 - Third Quarter Update

    Submitted response to NICE consultation on revised scope of the Dementia guideline.

    2015 - Second Quarter Update

    Took part in Scottish Caring and Dementia Congress where researcher from University of West of Scotland presented on the Lewy Body Dementia in Care Homes project funded by Parkinson's UK.

    Raised awareness of Lewy body dementia during Dementia Awareness Week and Dying Matters Awareness Week.

    Participated in 'Dementia and Music' event organised by 'Spirit of Creation' and built partnerships at the Alzheimer's Show in London.

    Spread the word about Parkinson's UK's dementia research in care homes through contacts at the South London Health Innovation Network Dementia meeting.

    2015 - First Quarter Update

    Launched UK Parkinson's Excellence Network http://www.parkinsons.org.uk/professionals/about-excellence-network which brings together health and social care professionals to transform care for people affected by Parkinson's. The Excellence Network provides a conduit for increasing understanding of the prevalence of Parkinson's dementia and the needs of people living with it.

    Attended and asked questions related to research and support for people living with Lewy body dementia at the All Party Parliamentary Group meetings on Dementia Research and End of Life Care.

    2014 - Second Quarter Update

    Published two new information leaflets aimed at people worried about symptoms of Lewy body dementia and those referred for a diagnosis. The leaflets are available online at: http://lewybody.org/new_leaflets

    Exhibited at the Scottish Caring and Dementia Congress. Participated in discussion with other DAA charity organisations about the potential for launching a Global Dementia Action Alliance involving international NGOs.

    2014 - First Quarter Update

    Lewy Body Society exhibited at Royal College of GPs 'One Day Essentials' conference on dementia for GPs and the Dementias 2014 conference. We took part in the DAA Quarterly Meeting on co-existing health conditions and the National Council for Palliative Care Steering Group on Complex and Long Term Health Conditions. With Parkinson's UK delivered a talk at the Care Show in Bournemouth about the care sector's role in improving community support for people affected by dementia. 

    We are continuing work on the development of a portfolio of literature: a handbook on Lewy body dementias for primary health and social care professionals and a set of leaflets for people with dementia with Lewy bodies and their family members.

    2013 - Fourth Quarter Update

    Exhibited and led a workshop on Lewy body dementia at the UK Dementia Congress. Participated in the DAA Annual Event and a British Psychological Society Faculty of the Psychology of Older People workshop on psychological aspects of dementia.

    2013 - Third Quarter Update

    Participated in launch of All Party Parliamentary Group on Dementia's launch of its enquiry report into dementia support for people from Black, Asian and Minority Ethnic Groups. Worked with SCIE and representatives from other dementia organisations to develop a resource for carers to support the NICE Dementia Quality Standard.

    Responded to NICE consultation on Mental Wellbeing of Older People in Care Homes.

    Took part in DAA Quarterly Meeting. 

    Chief Executive attended Downing Street reception in preparation for G8 Dementia Summit.

    2013 - Second Quarter Update

    Exhibited at the Alzheimer's Show and represented Lewy Body Society at the Alzheimer's and Dementia Support Services 'Enhancing Lives' conference. Took part in the Dementia Action Alliance Quarterly Meeting

    Supported carers of people with Lewy body dementia to participate in the James Lind Alliance dementia research Priority Setting Partnership survey and workshop.

    2013 - First Quarter Update

    Exhibited in the Dementia Village at NHS Expo and at Dementias 2013. Took part in the Dementia Action Alliance Quarterly Meeting.

  • Funding research

    Parkinson's UK funds research to identify people with Parkinson's who are at risk of getting dementia:  http://www.parkinsons.org.uk/sites/default/files/j-0802_burn_dementia_risk_0.pdf

    The charity is also investigating the education and support needs of staff in care homes to enable them to provide high quality care to people with a Lewy body dementia.

    Status:
    Delivery

    2015 - First Quarter Update

    Online survey complete for Lewy body dementia in care homes project. 69 homes out of 180 in the survey regions (Lanarkshire, Yorkshire and Lincolnshire) responded (just under 40 per cent). Researchers at Firefly Research and University of West of Scotland are preparing for the detailed fieldwork stage that begins in April, which will involve in-depth interviews in 6 care homes in Scotland and 6 in England.