Dementia post-diagnostic support evaluation: final report

Glossary of key terms

Age Scotland

National charity for older people in Scotland. Activities include supporting people affected by dementia through providing information, practical help and community initiatives.

Alzheimer Scotland

Scotland’s national dementia charity, working to provide dementia information, support, advocacy, and community services.

Care partner

Someone who provides ongoing support, unpaid, to a person living with dementia. A care partner can be a family member, a friend or a trusted community member.

Commissioning arrangement

This describes who delivers PDS within a Health and Social Care Partnership. There are three types of commissioning arrangements used for PDS: in-house (internal HSCP staff), commissioned (external partners) or hybrid (mix of internal staff and external partners).

Community stakeholders

Individuals, groups or organisations within a community that help to deliver support, activities and engagement within communities affected by in the case of this report, dementia.

COSLA

COSLA is a councillor-led, cross-party organisation who champions the work of Scotland’s Councils and its elected councillors to secure the resources and powers they need.

8 Pillar Model of Integrated Community Support

An evidence-based framework developed by Alzheimer Scotland to support people living with moderate to severe dementia. The model aims to provide a coordinated approach to support people with dementia living at home during the moderate to severe stages of illness by building on the one-year PDS guarantee to enable people with dementia to live in the community for as long as possible^[1].

5 Pillar Model

An evidence-based framework developed by Alzheimer Scotland and adopted by the Scottish Government to guide Link Workers in delivering personalised, outcome focused support for service users and their care partners.^[2]

Delivery partner

An organization, agency, or entity responsible for implementing and delivering PDS services. Delivery partners work collaboratively with commissioning bodies, healthcare providers, and other stakeholders to ensure that individuals living with dementia, as well as their families and care partners, receive tailored support

Everyone’s Story: A 10-Year Dementia Strategy for Scotland

The national 10-year strategy that sets out a long-term plan for improving the lives of people with dementia, their families and care partners across the country^[3].

Health and Social Care Partnerships (HSCPs)

Partnerships between NHS Health Board and local councils created to deliver community health and social care support. There are 31 HSCPs across Scotland.

Healthcare Improvement Scotland (HIS) Quality Improvement Framework

A framework designed to support healthcare providers in evaluating their care delivery and identify areas for improvement.

Integrated Authority Area (IAA)

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.

Link Worker (or PDS practitioner)

A specialist health and social care professional who provides dementia post-diagnostic support to people newly diagnosed with dementia.

Local Delivery Plan Standard (LDP)

To monitor the delivery of post-diagnostic support a national local delivery plan (LDP) standard was introduced. This is reported in two parts. Part one monitors the percentage of people estimated to be newly diagnosed with dementia who are referred for post-diagnostic support. Part two monitors the percentage of people referred who received a minimum of one year’s worth of post-diagnostic support coordinated by a Link Worker, including the building of a person centred plan.

Logic Model

An evaluation tool used to visually show the pathway from investment to impact. A typical model has the following main components: input (resources), activities, outcomes (short term, mid-term), impact (long-term).

NHS Health Boards (NHS Boards)

Regional organisations responsible for planning, delivering and overseeing healthcare services for people living within their geographic areas in Scotland.

Post-diagnostic support (PDS)

Structured support provided to a person after they received a diagnosis of dementia. The Scottish Government aims to guarantee a minimum of one year of person-centred support for everyone newly diagnosed.

Process evaluation

A way of examining how a programme is delivered by focusing on what happens in practice to understand whether a service is being implemented as intended. This includes focusing on the activities, resources and relationships that shape delivery.

Public Health Scotland (PHS)

Scotland’s national public health body, that leads and supports work across Scotland to protect and improve the health and wellbeing of the population. The body provides a range of health data and resources, including dashboards and datasets related to public health in Scotland.

Scottish Government (SG)

The national government of Scotland responsible for governing public life that fall under devolved powers from the UK Parliament.

Service user

A person living with dementia who receives, in the case of this report, post-diagnostic services.

Strategic leads

Senior professionals responsible for coordinating the implementation of Scotland’s National Dementia Strategy within their HSCP.

Young onset dementia

Dementia that is diagnosed in individuals under the age of 65.