Dementia post-diagnostic support evaluation: final report

7. Conclusion and recommendations

In their two-year delivery plan for their dementia strategy, Everyone’s Story, the Scottish Government committed to an independent evaluation of their flagship post-diagnostic support (PDS) for people living with dementia. PDS is a programme of support for people newly diagnosed with dementia to help them understand their condition, plan for the future and stay well for as long as possible. The aim is for everyone newly diagnosed with dementia in Scotland to receive a minimum of 12 months of PDS.

Scottish Government commissioned IFF Research to undertake the evaluation of PDS in Scotland. To do this, we first produced a Logic Model and Evaluation Framework to underpin the evaluation, then carried out interviews with HSCP leads, frontline practitioners, people living with dementia who receive PDS and their care partners, one person living with dementia who refused PDS and community and national stakeholders across six case study HSCPs. We also analysed data from HSCP monitoring returns sent to the Scottish Government as well as PHS data on PDS.

Overall conclusion

This evaluation found that Scotland’s PDS was largely effective at delivering person-centred, trauma-informed support that helped people understand their dementia diagnosis, plan for the future and feel more confident about what lies ahead. Feeling listened to, participation in care and reduced distress were all consistently reported among services users, though delays in starting PDS could diminish benefits in terms of adjusting to diagnosis.

Across Scotland, once people started PDS, they normally received the minimum of 12 months support, but this has not yet been universally achieved. A gap also still remains in equitable access, as underserved groups (e.g., minority ethnic communities, rural residents, those with young onset dementia or learning disabilities, and care home residents) did not always experience PDS at the same standard as others.

Some of the longer-term impacts of PDS, for example living well for longer in the community and potential reductions in formal health interventions in the form of A&E, hospital and GP use showed promising signs of taking effect, but more data is needed to confirm this.

Overall, this evaluation supports the idea that PDS is a valuable, world-leading approach to supporting people living with dementia and their care partners. PDS is already producing important outcomes for people living with dementia. Through the learnings and recommendations provided by this evaluation, PDS can be developed further to ensure outcomes are strengthened and experienced equally by everyone diagnosed with dementia in Scotland.

Recommendations

Recommendations from the evaluation are summarised below. Unless otherwise specified, the recommendations are aimed at all delivery partners, including Scottish Government, HSCPs, Alzheimer’s Scotland and other organisation engaged in the delivery of PDS.

Recommendation 1: Flexibility in PDS delivery

Aim: HSCPs to provide PDS in a flexible way that meets every person’s needs.

HSCPs should build flexibility into how they deliver PDS, so it is truly person-centred. This flexibility should include:

• choosing the PDS start date together with the person living with dementia;
• offering PDS in different formats to meet different needs, such group sessions as well as one-to-one support;
• allowing people to contact their PDS practitioner and have sessions at intervals that are most suitable for them, instead of sticking to fixed appointment schedules;
• providing more than 12 months of support (where possible) when the person living with dementia needs it.

HSCPs should share learning and good practice around flexible approaches to PDS delivery, to enable all HSCPs to put these approaches into practice.

See “Flexibility and tailoring of support” in the main report for the findings that led to this recommendation.

Recommendation 2: Improving waiting times

Aim: Scottish Government to commit resources and planning to address waiting times.

Scottish Government should commit to working with HSCPs to reduce PDS waiting times in the next Dementia Strategy 2-year delivery plan.

In the meantime, while people are waiting for PDS to begin, HSCPs should provide some light-touch interim support where possible. This could include information packs (including content such as what to expect from PDS, information about early symptoms, signposting to any financial support they are entitled to), links to local community support, or a one-off session to help them adjust to their diagnosis.

See “Waiting times for accessing PDS” in the man report for the findings that led to this recommendation.

Recommendation 3: Supporting community groups and services

Aim: HSCPs to strengthen community groups and services as a core part of PDS delivery.

Delivery partners should make sure that their PDS service has direct links to a wide range of community and third sector organisations. These organisations should offer tailored support to a diverse range of service users and provide ongoing help once someone finishes PDS.

HSCPs should consider how they can support these organisations through their health and social care fund. This includes providing financial support to existing organisations and the creation of new ones based on local needs, for example services for care partners, people with young onset dementia, rural residents, people with a learning disability or people from minority ethnic communities.

See “Challenges and Limitations of PDS” in the main report for the findings that led to this recommendation.

Recommendation 4: PDS works for diverse service users

Aim: To ensure PDS meets the needs of all service users.

HSCPs should introduce cultural competency training for PDS practitioners (where this is not already available). HSCPs should also strengthen recruitment practices (e.g. offering inclusive‑recruitment training to hiring managers to reduce bias, or advertising roles on platforms that reach minority ethnic communities) to help build a more diverse PDS practitioner workforce.

Delivery partners should work together to adapt existing delivery models or create new ones that meet the needs of people living with dementia who live in care homes or who have learning disabilities.

See “Challenges and Limitations” in the main report for the findings that led to this recommendation.

Recommendation 5: Improving the data available related to PDS

Aim: To robustly evidence the value and impact of PDS.

HSCPs should work with Public Health Scotland (PHS) to develop and share frameworks for monitoring PDS outcomes, that is, the difference PDS makes to people living with dementia, as described in the Logic Model. This collaboration would include HSCPs and PHS working together to determine what information needs to be collected to evidence outcomes and PHS sharing this in their annual reports. This should include monitoring the impact of any actions to reduce waiting times (see Recommendation 2).

See “Outcomes” in the main report for the findings that led to this recommendation.