Dementia post-diagnostic support evaluation: final report

1. Introduction

This is the final report from an independent evaluation of dementia post-diagnostic support (PDS) in Scotland. The ultimate aim of the evaluation was to provide impartial and independent evidence on the effectiveness and impact of PDS, including on those living with dementia and their care partners, and help inform future developments.

Policy and legislative background and context

Scotland’s new Dementia Strategy was launched in 2023 and marked a pivotal step in the devolved Scottish Government (SG) addressing the growing challenges posed by dementia^[12]. It is predicted that over 100,000 people in Scotland will be living with dementia by 2044^[13]. The Strategy reflects the SG’s commitment to improving the lives of people living with dementia and those who support them. The Strategy prioritises collaboration amongst healthcare providers, social care and communities to deliver integrated care that meets individual needs. The Strategy also acknowledges the importance of tackling inequalities in access to diagnosis and care and prioritises ensuring that everyone receives high-quality care and support.

About PDS in Scotland

One of the key policy aims in the Strategy is improving the uptake of Scotland’s flagship dementia policy, PDS. Central to this approach is the Local Delivery Plan (LDP) standard that all people newly diagnosed with dementia will receive a minimum of one year’s PDS. This aims to ensure people receive timely, personalised guidance (in line with Getting it right for everyone^[14]) to help individuals and those that support them to navigate the complexities of dementia, offering emotional support, practical advice, and tools to live as well as possible and prepare for the future.

This evaluation builds on a range of relevant research relating to PDS. Key points from this previous research are summarised below, but additional findings and research are included in the Appendices.

Through discussions with communities across Scotland, the National Conversation found that despite Scotland’s strong policy ambitions, many individuals, families, and carers experienced a gap between these commitments and the reality of support, compounded by an under skilled workforce and limited person‑centred care.^[15] Communities and peer networks played a vital role, yet structural challenges, such as uneven access to post‑diagnostic support, the emotional trauma of diagnosis, high costs of specialist care, and a lack of preventative or early‑intervention activity, continued to shape people’s experiences. There was also a growing call to reframe dementia as a brain‑health condition and to strengthen community‑led, accessible support that meets people where they are.

SG commissioned a literature review of dementia research, to inform the new Dementia Strategy for Scotland.^[16] The review concluded that although there are a range of care models and interventions that show promise in supporting people living with dementia and their care partners, there were also areas where significant improvements were needed. This included, creating supportive home and neighbourhood environments that help people remain independent and connected and ensuring care at home prioritises autonomy and sustained assistance for those providing care. The review also found that intervention should provide equitable provision for marginalised groups, such as minority ethnic communities, who faced structural exclusion in healthcare.

Overall, these findings demonstrated that there is a foundational body of evidence relating to PDS. This evaluation aims to assess the wider scope of PDS to support ongoing development of the service.

PDS Logic Model

As part of the evaluation, IFF Research developed a Logic Model to underpin the delivery of the evaluation. The full model is presented in the Appendix.

A logic model is a visual representation of how PDS is intended to impact its beneficiaries. The logic model captures the ultimate impacts PDS intends to have on beneficiaries, including the sequence of events expected to lead to short-term outcomes that, together, if achieved, are expected to lead to the impacts. It summarises the rationale for providing the support and shows some of the mechanisms by which change might come about.

The logic model is divided into sections (inputs, activities, outcomes, impacts) and broadly describes what kinds of changes are expected. The logic model acknowledges, in the underlying assumptions, including that PDS is delivered different in each HSCP. An overview of the different sections of the PDS logic model and what is included in each is provided below.

Inputs: Resources that enable high-quality PDS support:

• National and local funding and strategic direction.
• Involvement of people with lived experience, carers, and dementia organisations.
• A skilled workforce: PDS leads, practitioners, coordinators, and support staff.
• Training, supervision, digital tools, and quality frameworks.
• Collaboration across primary care, community organisations, and third-sector providers.
• A shared commitment to person-centred, rights‑based dementia support.

Core Activities: What PDS services deliver:

• Monitoring and quality improvement, supported by the Local Delivery Plan (LDP) and data systems.
• Accessible, flexible, one‑year post-diagnostic support, tailored to individual needs.
• Relationship‑based practice, enabling emotional support, future planning, and personal outcomes.
• Carer support, including advice, psychoeducation, and links to community resources.
• Awareness‑raising so that referrers and other professionals understand and use PDS effectively.
• Workforce development, including supervision, reflective practice, and training.
• Partnership working with primary care, social work, community groups, and third‑sector services.

Short‑Term Outcomes: Immediate results for service users, care partners and practitioners:

• People experience person‑centred, timely support that reflects their goals and circumstances.
• PDS practitioners develop strong therapeutic relationships and help individuals create personalised plans.
• Carers receive clear information and emotional and practical support.
• People with dementia understand available resources and engage more confidently with support services.
• Practitioners feel more skilled, confident, and knowledgeable.
• Communication improves between PDS and wider services, strengthening continuity of care.

Mid‑Term Outcomes: Changes as the model embeds:

• Routine data and practitioner learning drive continuous improvement and more consistent service quality.
• People with dementia and carers feel better informed, more confident, and more prepared for the future.
• Support becomes more equitable across areas and populations.
• Workforce capability grows as practitioners access training, tools, and supportive supervision.
• Partnerships across primary care, social care, and community organisations become stronger and more coordinated.
• Staff wellbeing improves, contributing to a more stable workforce.

Long‑Term Impacts: Over time, the model leads to:

• High‑quality, equitable PDS across Scotland, informed by robust national and local data.
• People with dementia experiencing improved quality of life, better self‑management, and fewer avoidable crises or hospital admissions.
• More consistent support for carers, reducing stress and improving wellbeing.
• A confident, valued workforce with lower turnover and higher morale.
• System‑level improvements in dementia care planning, commissioning, and resource allocation.