YoungDementia UK

YoungDementia UK enables younger people and their families to live well with dementia. We provide tailored, direct support and a welcoming community for people in Oxfordshire and adjoining counties – from diagnosis to beyond bereavement. Regionally and nationally, we seek to promote a better understanding of young onset dementia among professionals and the public. www.youngdementiauk.org

Updated:
22 August 2017
Location:
National
Sectors:
Health, Care

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?

YoungDementia UK is dedicated to ensuring people affected by young onset dementia have the best opportunity to live well. We provide tailored support for younger people, their family members and we offer a range of social events for everyone involved. People with dementia using our services are usually between 30-65 years, whilst the family members are from 8 to 80 years. Our support focuses on the specific needs of younger people who are likely to still be leading very active lifestyles, be employed, have children or family members to care for and considerable financial commitments.  Specialist services are limited and we currently provide direct support in Oxfordshire with increasing reach into adjacent counties.  We are always looking for opportunities to work with other organisations to highlight the different needs of people with young onset dementia in both health, social care and all-age dementia services.

We are also promoting a better understanding of young onset dementia amongst younger people’s own networks, professionals and the public. Our aim is to create a welcoming, enabling community for people affected by young onset dementia and work with others to create a society in which all those affected by dementia will live well and be valued

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

The first challenge to achieving our plan is the relative rarity of young onset dementia compared to that of older people with the condition. The difficulties of diagnosing dementia in younger people and the limited awareness of the condition means that their complex and very different needs are frequently ignored, poorly served and are rarely a priority.

The second challenge is the lack of direction from government policy.  Even with so much activity relating to the National Dementia Strategy there is very little encouraging appropriate support and care for younger people. 

Thirdly, the funding available is frequently offered for short-term projects rather than ongoing support.  This means that issues affecting younger people, for whom consistency is key, are rarely included.

Direct, individual support relationships are highly valued by people with young onset dementia and our challenge is to continue to ensure excellence in this area whilst sharing our practice, encouraging support regionally and championing the cause of young onset dementia nationally.

Member contacts

www.youngdementiauk.org/‎

Member website

www.youngdementiauk.org

2. Actions

  • Developing and improving

    Continue developing and improving the individual support for younger people with dementia in Oxfordshire – create opportunities to enrich life, connect to the local community and fulfil everyday activities and special wishes too

    Status:
    Delivery

    2017 - Third Quarter Update

    We continue to develop opportunities for people in Oxfordshire to meet with others whose lives are affected by young onset dementia.  We have increased the number and types of groups that meet regularly across the county, enabling people to make connections and be more engaged and active socially.  

    We have entered into a partnership with two other dementia service providers in the county, Age UK Oxfordshire & Guideposts, which will enable us to provide a more comprehensive and integrated support service in Oxfordshire.

    2015 - Fourth Quarter Update

    We continue to develop opportunities for people in Oxfordshire to meet with others whose lives are affected by young onset dementia.  We have increased the number and types of groups that meet regularly across the county, enabling people to make connections and be more engaged and active socially.  

    We have entered into a partnership with two other dementia service providers in the county, Age UK Oxfordshire & Guideposts, which will enable us to provide a more comprehensive and integrated support service in Oxfordshire.

    2014 - Fourth Quarter Update

    The group we set up to enable young people with dementia to socialise with eachother has been named 'Like Minds' by those who attend.  We are now running this group in three locations across Oxfordshire, providing an informal environment for younger people with dementia to meet others and gain peer support.  

    2012 - Third Quarter Update

    We have launched a new group in response to requests from members in the early stages of their dementias, some of whom are not yet ready for one-to-one support. The group introduces them to others so they can share experiences, relax, make friends and build a new social circle.

    2012 - Second Quarter Update

    YoungDementia UK has just joined the Alliance so has nothing further to report for the past quarter

    2012 - First Quarter Update

    Nothing to report this quarter

  • Develop early stage support

    Further develop early stage support in Oxfordshire for family members and for younger people immediately after diagnosis to help them emotionally, practically and with information.

    Status:
    Delivery

    2017 - Third Quarter Update

    Our continued, regular attendance at the local Cognitive Disorders Clinic enables us to meet with people on the day of diagnosis and make the offer of information and support immediately.  Whilst one-to-one support may not be appropriate or wanted at this early stage, making this timely connection is very valuable as it ensures that people know they are not on their own with this diagnosis.  It enables people to be linked directly into ongoing social, practical and emotional support. They are offered an information pack at diagnosis with all the relevent information in, so they are able to access support in their own time.  

    2015 - Fourth Quarter Update

    Our continued, regular attendance at the local Cognitive Disorders Clinic enables us to meet with people on the day of diagnosis and make the offer of information and support immediately.  Whilst one-to-one support may not be appropriate or wanted at this early stage, making this timely connection is very valuable as it ensures that people know they are not on their own with this diagnosis.  It enables people to be linked directly into ongoing social, practical and emotional support.

    2014 - Fourth Quarter Update

    Our presence at the local Cognitive Disorders Clinic has continued which enables us to build vital links with people from the day of their diagnosis. Whilst they may not wish to, or feel able to take up our support at this very early stage, feedback has shown that people are grateful to know support is available and they do access it at the point when they are ready to do so. 

    Our website, lauched in March 2014, also provides information and support to people affected by young onset dementia wherever they live. 

    2012 - Third Quarter Update

    Our pilot scheme to provide information and support to younger people and their families at the regional Cognitive Disorders Clinic is proving to be extremely positive for many families. Our Family Support Workers will continue to be present for the next 12 months with a view to making this a permanent arrangement if funding can be secured.

    We have also started a Coffee’n’Chat group for members in south Oxfordshire offering families in and around Henley the chance to socialise and discuss issues with a family support worker.

    2012 - Second Quarter Update

    YoungDementia UK has just joined the Alliance so has nothing further to report for the past quarter

    2012 - First Quarter Update

    Nothing to report this quarter

  • YDUK website & social media

    Use YDUK website and social media platforms to develop young onset dementia network and share experience with other organisations and professionals

    Status:
    Delivery

    2017 - Third Quarter Update

    We are continuing to use our social media platforms (Facebook/ Twitter) to share personal and professional experience as well as creating links for people affected by Young Onset Dementia.

     Our Young Dementia Network has nearly 900 members and has its own area on the YoungDementia UK website. Within this we share good practice from around the country and promote projects that are taking place. 

    2015 - Fourth Quarter Update

    We are using our website and social media platforms (Facebook / Twitter) to develop our national young onset dementia network and share our experience with other individuals, organisations and professionals.  We are increasingly using our social media pages to encourage the sharing of personal experience and to create links between people whose lives are affected by young onset.  

    We have added ReadSpeaker page reading software to our website to make it more accessible to people with reading / visual issues. 

    2014 - Fourth Quarter Update

    Our website has been viewed by nearly 11,000 people since March.  We have used it as a platform to give people with young onset, their family members and professionals a voice and to share their stories with a wider audience.  Our guest blog section has been written by two people with young onset and a young onset support worker so far. Our home page has a space where we share short films about young onset.  We have Personal Story sections across the site and have developed a Service Showcase section where people can write about the young onset service they work at or attend.  We share the stories on our website via Twitter and Facebook, extending their reach and helping us build connections with people nationally who share our passion for people with young onset. 

    Using connections made via our website, social media and organisations like DAA we will be hosting the first meeting of a young onset dementia steering group in December, made up of people with a personal or professional interest in young onset dementia. We hope that through the steering group we will be able to pool resources and knowledge and work together to raise awareness and bring about changes to issues faced by people living with young onset. 

    2012 - Third Quarter Update

    Proposals have now been received to re-develop the YoungDementia UK website, to better meet the needs of both families and professionals.

    2012 - Second Quarter Update

    YoungDementia UK has just joined the Alliance so has nothing further to report for the past quarter

    2012 - First Quarter Update

    Nothing to report this quarter

  • Small-scale accommodation

    Develop specialist small-scale accommodation for short breaks and long term for people with young onset dementia.

    Status:
    Planning

    2017 - Third Quarter Update

    We continue to support our sister charity YoungDementia UK Homes with their plans to build a 12 bed specialist young onset independent living facility in North Oxfordshire. 

    2015 - Fourth Quarter Update

    We continue to support our sister charity YoungDementia UK Homes with their plans to build a 12 bed specialist young onset independent living facility in North Oxfordshire.  A planning decision is awaited in November 2015.

    2014 - Fourth Quarter Update

    Our sister charity YoungDementia UK Homes has been offered a long lease on a site in Charlbury, Oxfordshire and is currently submitting a planning application for a 12 bed residential facility specifically for people with young onset dementia.  They hope to hear in early 2015 whether they have been given planning permission for the scheme.  They have also just launched a website - www.youngdementiaukhomes.org

    2012 - Third Quarter Update

    We are working closely with our sister charity, YoungDementia UK Homes, which is driving this project forward. YDUK Homes has recently appointed a director who will be working full time on the project.

    2012 - Second Quarter Update

    YoungDementia UK has just joined the Alliance so has nothing further to report for the past quarter

    2012 - First Quarter Update

    Nothing to report this quarter

  • Creation and development of a National Young Onset Dementia Network

    Working alongside others with a personal and professional interest in young onset dementia, we are in the process of building a National Young Onset Dementia Network.  The aim of the network is to increase understanding of the condition, ease the route to a timely diagnosis and ensure age appropriate support is available to all. 

    Status:
    Delivery

    2017 - Third Quarter Update

    The Young Dementia Network steering group meets every 12 weeks to feedback on developments from around the country, share ideas and work on projects. From the steering group we have developed 3 workstreams that focus on Research, Pre and Post diagnosis and Understanding and Awareness. The workstreams and steering group have produced a Young Onset Dementia care pathway, a Diagnostic Tool for GPs and have helped  to influence the Memory Service Accreditation Standards to include the requirement for age-appropriate information and support. 

    The Young Dementia Network has nearly 900 members and is growing. We produce a network newsletter bi monthly and encourage people to share their experience and projects so we can include them. 

    2015 - Fourth Quarter Update

    We are actively developing our national programme, initially through a small team made up of individuals and professionals with experience of young onset dementia.  We have plans to develop a national network who will act and build on the identified priorities - increasing awareness / understanding of young onset, easing the route to timely diagnosis and ensuring age appropriate support is available to all.   In the meantime, the network team is actively investigating and working on these issues, in advance of a full network launch.  

    We are in the process of recruiting a National Young Onset Dementia Development Manager.  From February 2016 we will have access to a new CRM system which will assist us to build links with younger people with dementia, develop our communications and better manage our connections nationally.  This will also help support our funding / fundraising processes and so ensure the sustainability of the National Young Onset Dementia Network.   

    2015 - First Quarter Update

    A steering group has been set up made up of a group of people who are living with young onset dementia, their family members and professionals working in the young onset field.  An intial meeting has taken place from which goals and objectives were agreed.