Background

Background to improving post-diagnostic support for people with dementia in Scotland

Focus on Dementia led on this second edition of the framework. The original was published in September 2018 and its development was also led by Focus on Dementia with the help of the Post-diagnostic Support Quality Group (a group set up by Focus on Dementia). The framework was further developed with the support of a range of health and social care practitioners, third sector, policy, improvement and education colleagues, people with dementia and those who care for them. This second edition has also been produced collaboratively. It reflects changes to practice necessitated and influenced by working in a COVID-19 context and by feedback from those who used the first edition.

Focus on Dementia is the national improvement programme for dementia in Scotland, based within Healthcare Improvement Scotland’s Improvement Hub (ihub). We work in partnership with national organisations, health and social care partnerships, people with dementia and those who care for them to improve the quality of care and support.

Taking a whole pathway approach, our work supports improvements in:

• diagnosis and post-diagnostic support
• integrated care co-ordination in the community
• care of people with dementia in hospitals, including specialist dementia units, and
• advanced care.

In partnership with Alzheimer Scotland and NHS Education for Scotland (NES), a post-diagnostic support network was established in 2017 to support learning and improvement for all practitioners delivering dementia post-diagnostic support in Scotland. This network continues to thrive and is now a wider dementia practitioner network. Focus on Dementia also facilitate the National Post-Diagnostic Support Leads network which meets quarterly.

In 2011, Alzheimer Scotland launched the 5 Pillars model of post-diagnostic support[1]. The purpose of post-diagnostic support is to equip people living with dementia, and those who care for them, with the tools, connections, resources and plans they need to live as well as possible and prepare for the future. Informed by Alzheimer Scotland’s 5 Pillars model of post-diagnostic support, Scotland’s second National Dementia Strategy[2], published in April 2013 set out the target that all people newly diagnosed with dementia will have a minimum of one year’s post-diagnostic support co-ordinated by a named Link Worker, including developing a person-centred support plan.

Scotland’s National Dementia Strategies[2,3] continue to emphasise the importance of prioritising the development of post-diagnostic support in Scotland and the Local Delivery Plan Standard[4] continues to state that people newly diagnosed with dementia will have a minimum of one year’s post-diagnostic support co-ordinated by a named Link Worker. The Dementia and COVID-19 – National Action Plan[5] to continue to support recovery for people with dementia and their carers also continues to emphasise this commitment.