Dementia post-diagnostic support evaluation: final report
Independent evaluation undertaken to understand the impacts of Post Diagnostic Support (PDS) for people across Scotland who have been diagnosed with dementia. Scottish Government commissioned IFF Research to undertake this evaluation to inform future developments.
Footnotes
1 New dementia strategy for Scotland: Everyone's Story - gov.scot
2 New dementia strategy for Scotland: Everyone's Story - gov.scot
3 New dementia strategy for Scotland: Everyone's Story - gov.scot
4 New dementia strategy for Scotland: Everyone's Story - gov.scot
5 Dementia in Scotland: Everyone’s Story Delivery Plan 2024-2026
6 A Logic Model is a visual diagram that shows step-by-step how an intervention (like PDS) is supposed to lead to specific results.
7An evaluation framework is a clear plan that outlines what elements of an intervention (like PDS) need to be explored and what questions need to be answered in order to understand if the intervention is actually working.
8 This describes who delivers PDS within a Health and Social Care Partnership.
9 These are forms that HSCPs fill in for the Scottish Government with data related to PDS delivery.
10 Note that this is Alzheimer Scotland terminology, the term PDS practitioners is also widely used. A Link Worker is a specialist health and social care professional who provides dementia post-diagnostic support to people newly diagnosed with dementia.
12 New dementia strategy for Scotland: Everyone's Story - gov.scot
13 Scottish Burden of Disease - scotpho.org.uk
14 Getting it right for everyone (GIRFE) - gov.scot
16 A New Dementia Strategy for Scotland Literature Review, Dementia Services Development Centre
17 A process and theory-based outcomes evaluation looks at how a programme was delivered and whether the changes it led to match what it was expected to achieve. In short, it helps explain what happened, what difference it made, and why.
18 These are forms that HSCPs fill in for the Scottish Government with data related to PDS delivery.
19 A group of expert stakeholders with experience of dementia care who provided guidance at key stages of the evaluation.
20 Note that data on achievement of the LDP standard was based on the 2022/23 financial year.
21 The geographic area covered by an Integration Authority, the body responsible for planning and delivering integrated health and social care services, in Scotland. There are 31 Integrated Authority Areas in Scotland.
22 (Source: Map sourced from Wikimedia Commons, by Nilfanion, created using Ordnance Survey data. Crown copyright and database right, Creative Commons Attribution-Share Alike 3.0 Unported)
23 Note that the case study that use Age Scotland referred to themselves as a hybrid model in the monitoring return, but described a commissioned practise during interviews.
24 The 5 pillars are: planning for future decision-making, supporting community connections, peer support, planning for future care, and understanding the illness and managing symptoms
25 The 8 pillars are: dementia practice coordinator, support for carers, personalised support, community connections, environment, mental health care and treatment, general health care and treatment, therapeutic interventions to tackle symptoms of the illness
26 Scotland’s National Dementia Strategy 2017-2020
27 Percentages do not always sum to 100%, please see Additional Methodological Detail appendix.
28 Creating a unique, personalised playlist for people living with dementia, that both themselves and carers can use, which has psychological benefits.
29 Dementia - health and social services staff: framework - Promoting Excellence 2021 - gov.scot A national workforce development framework that sets high aims for the care and support of people with dementia, their families and carers.
30 Physical therapy is a healthcare treatment that uses exercise, movement, and hands‑on techniques to help people reduce pain, improve strength, and move more easily.
31 Cognitive simulation therapy is a set of activities that help people with mild to moderate dementia stay mentally active, socially engaged, and confident by guiding them through sessions designed to support thinking skills.
32 NHS Orkney had no referrals in 2022/23 Q3 and Q4, as they were unable to access a consultant psychiatrist. This has affected the Orkney figure reported for 2022/23.
33 Note Shetland Islands did not have a PDS worker in post from 2022/23 Q1 through 2023/24 Q3. This has affected the Shetland Islands figure reported for 2023/24.
34 Stages of dementia and progression - Alzheimer's Society
35 Figures for 2022/23 are provisional subject to all service users completing their support.
36 Aberdeenshire and South Lanarkshire were excluded from these calculations due to no data being available in the monitoring returns.
37 FoD Quality Improvement Framework dementia PDS March 2025
38 Note that these ‘workforce issues” that present a challenge to providing support to people where and when they need it was identified as a barrier to PDS in the report on “A National Conversation to Inform a new Dementia Strategy for Scotland – What People Told Us”
39 Note that this ‘postcode lottery’ of community support was identified as a barrier to PDS in the report on “A National Conversation to Inform a new Dementia Strategy for Scotland – What People Told Us”
40 Note that a ‘postcode lottery’ including the idea that not everyone receiveds PDS to the same standard was given as a barrier to PDS in the report on “A National Conversation to Inform a new Dementia Strategy for Scotland – What People Told Us”
41 Charter of Rights for People with Dementia and their Carers in Scotland
42 The importance of community in the lives of those caring for those living with or caring for someone living with dementia came out strongly in the PDS report A National Conversation to Inform a new Dementia Strategy for Scotland – What People Told Us”
43 If you would like a copy of the original PowerPoint version of the Logic Model, please contact hello@iffresearch.com with reference “FAO: Elizabeth Bromley, 13578: logic model PowerPoint”.
44 Deaths from Alzheimer’s disease and other dementias, 2023, Report - nrsscotland.gov.uk
48 A New Dementia Strategy for Scotland Literature Review, Dementia Services Development Centre
49 If dementia PDS service delivery is one part of a member of staff’s role, we would ask that an estimate of the WTE focused on PDS service delivery is provided.
50 This may include use of the Single Quality Question developed by Healthcare Improvement Scotland
Contact
Email: dementiapolicy@gov.scot