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Younger People with Dementia (Berkshire West)

The organisation supports Younger People with Dementia and their carers within the Reading, West Berkshire and Wokingham areas across the full range of their needs, from support at the time of initial diagnosis to ongoing help with activities and day-to-day living.

18 March 2014
South East
Voluntary Sector
Local Alliances:
Wokingham Borough DAA

1. Action Plan

1. The National Dementia Declaration lists a number of outcomes that we 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?

Younger people with dementia are those exhibiting symptoms before the age of 65.  They experience all the problems associated with older people, but have additional issues that can cause significant distress.  They are likely to have financial difficulties  - being made redundant, their carer having to give up work to look after them, mortgages and pension contributions to pay, maybe children to put through education.  They are more active so don’t respond to more elderly-oriented therapeutic activities.  Their carers suffer too - the emotional wrench of witnessing the deterioration of their loved one so early in life, along with the burden of caring, cause many to develop their own mental health issues.

Our aim is to help alleviate some of these problems.  We provide age-appropriate activities such as a choir, gardening, walking, canoeing and orienteering.  We organise social occasions such in a pub-like environment where they can relax with others in the same boat.  We work closely with Berkshire Healthcare Trust to provide education for family carers.  We have our own Admiral Nurse to provide practical and emotional support for carers.  And we campaign to bring the plight of these younger people to the attention of the authorities and community. 

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

To deliver our services there are a number of problems that must be overcome:

  • GPs need to become more aware of dementia in younger people (currently less than 40% get a diagnosis and for those that do it takes typically over 4 years).
  • There are very few dedicated services within the NHS and they are unstructured, inconsistent and younger people are treated by Old Age Services.
  • Attracting younger people with dementia and their carers to use our services is difficult as there is a reticence to recognise the need for help and thus the benefits that accrue.
  • We are a start-up charity with no traditional funding stream, so raising funds is difficult.
  • Recruiting volunteers from outside the dementia community is problematic because of the stigma associated with the disease

Member contacts


2. Actions

  • Developing an effective Admiral Nurse service

    We will ensure that our Admiral Nurse provides excellent service to carers of younger people with dementia across our territory as judged by the quality standards laid down by Dementia UK.


    2013 - Fourth Quarter Update

    Our Admiral Nurse service has been running for almost a year now and has generally been well received by service users.  It has become clear that service requirements for younger people differs in several respects from that for the more usual age group.  This has meant that the prescriptive processes defined by Dementia UK don't always apply and consequently we don't always meet the measures expected of a standard Admiral Nurse.  We will continue to monitor this throughout 2014.

    2013 - Third Quarter Update

    New member

  • Making GPs more aware of younger people with dementia

    We will offer to provide training through TIPs programmes, provide information literature, and circulate our YPWD Newsletter to all GP Practices within Berkshire West.


    2013 - Third Quarter Update

    New member

  • Increasing referrals from Memory Services

    We will continue to liaise with memory services to encourage them to refer patients to the charity both for therapeutic services and the services of our Admiral Nurse.


    2013 - Third Quarter Update

    New member

  • Building a stable funding programme

    To keep up our work we need to develop our capability to raise funds from grants, regular subscriptions and fund-raising events.


    2013 - Fourth Quarter Update

    We have secured a further year's funding for our Respite Service through our partners in the Local Authorities and CCGs.  There is good reason to expect that to continue beyond 2014/15.

    Sponsorship and fundraising has also been successful with supporters achieving amazing feats to raise money.  In addition Johnson & Johnson have chosen YPWD as their supported charity for 2013/14.

    2013 - Third Quarter Update

    New member