Evaluating Post-Diagnostic Support for people living with dementia
At a glance
The Scottish Government wanted to better understand how Post-Diagnostic Support (PDS) was being delivered across Scotland, as part of its wider dementia care strategy. IFF was commissioned to deliver an evaluation, combining in-depth local case studies with national data and lived experience input. Our evaluation provided clear actionable insight into what’s working well, where delivery varies, and what could be improved to support more consistent, timely and person-centred PDS across Scotland.
About the client
The Scottish Government is responsible for devolved policy and services in Scotland, including health and social care.
Challenges and objectives
In 2023 the Scottish Government published Everyone’s Story, a dementia strategy setting out a long-term plan to improve the lives of people living with dementia and the people who support them. Post-Diagnostic Support is a core part of that strategy. PDS offers structured support after diagnosis to help people understand their condition, plan for the future and stay as well as possible. The aim is for everyone newly diagnosed with dementia to be offered a minimum of 12 months of support.
To support the aims of this policy and continuous improvement of PDS, the Scottish Government needed robust evidence on how PDS is currently being delivered in practice: understanding what ‘good’ looks like, where and why delivery differs between areas, the extent to which people are accessing PDS in a timely way, and whether particular groups face additional barriers.
The evaluation also needed to generate practical learning the Scottish Government and local partners could use to strengthen referral pathways, address waiting times and improve equity of provision.
Solution
IFF designed and delivered an integrated process and outcomes evaluation.
The project began with a scoping phase (including a document review and a stakeholder workshop) to develop a PDS Logic Model and evaluation framework, so the work stayed focused on the outcomes that matter most to people living with dementia and their care partners.
Then, we carried out qualitative case studies across six Health and Social Care Partnerships (HSCPs), selected to reflect different delivery approaches (in-house, commissioned and hybrid) and a mix of geographies and communities. We engaged with people living with dementia and care partners, frontline PDS practitioners, HSCP strategic leads, and local and national community stakeholders. This ensured the Scottish Government could see how PDS works from multiple perspectives. An accessibility-led approach was key to making this happen, particularly when working with people with living with dementia.
The case study insight was combined with national data, examining Public Health Scotland (PHS) publications and HSCP monitoring returns.
Impact
The evaluation gave the Scottish Government a clear, evidence-based view of PDS delivery across Scotland.
It highlighted what people valued most and what helped the process work well, including the expertise of staff, strong relationships, a high degree of collaboration with third sector organisations, and the flexibility of PDS allowing tailoring and personalisation of support.
The findings also showed where policy ambition is not yet being met consistently. National data indicated that only 50% of people estimated to be newly diagnosed with dementia were referred for PDS, and that there was a wide variation in the time between diagnosis and first contact.
Practical recommendations were also set out to inform next steps. This included greater flexibility in delivery, shorter waiting times with interim support where delays are unavoidable, stronger links to community and third-sector provision, and improvements to how PDS works for people who face additional barriers (such as living in rural areas, people with young onset dementia, and those from minority ethnic communities).
“The evaluation provided insight into what’s working well whilst also identifying several key issues, including lack of flexibility in delivery, long waiting times between referral and starting PDS and limited signposting to community and third-sector provisions. The next phase of delivery for the Dementia Strategy provides a clear opportunity for the Scottish Government and local partners to take forward the recommendations from the evaluation. ”
Representative,
Scottish Government