Living Well with SDS

Living Well with Younger Onset Dementia : Key Learning Points

  • The lack of clear information and a pathway is a significant barrier for people with younger onset dementia. The Website Page Prototype offers an example of how online dementia information can be delivered. The My Living Well Pack aims to help people and practitioners create a clear pathway for each individual. It can be tailored to the person and the locality in which they live.
  • People with younger onset dementia, their carers and many practitioners have limited information about self-directed support, particularly around financial and legal planning. Making a Power of Attorney soon after diagnosis secures future access to all the self-directed support options. The My Living Well Pack contains a ‘Money and Legal’ section which aims to prompt people to consider these issues in good time.
  • There is a lack of personalised and age appropriate supports for people with younger onset dementia. Day services that cater for an older generation are unlikely to deliver desired outcomes for people under sixty five. Self-directed support offers the opportunity for Bespoke Supports planning, commissioning and delivery.
  • Mapping and sharing knowledge and information about community assets is essential for strengths based approaches to self-directed support conversations and creative planning. Building a community asset map can help people identify bespoke support opportunities.  Website Page Prototype.
  • Carers do not feel listened to, despite being the people who know the person with younger onset dementia the best and providing the overwhelming majority of care and support. Carers report a lack of practical support and a lack of appropriate, flexible and creative respite opportunities. Once the Carers Support (Scotland) Act 2016 is implemented, carers will have a right to have a support plan and to access self-directed support in their own right. To help carers maximise this opportunity we have developed Carer Support Planning Toolkit.
  • In South Ayrshire the national one year post-diagnostic support entitlement is delivered by Community Psychiatric Nurses. All practitioners delivering post-diagnostic support need a good understanding of self-directed support. Learning and development programmes on self-directed support will be required to ensure practitioners feel confident in their roles and can meet and evidence the relevant indicators in the Quality Improvement Framework for Post-Diagnostic Support.