Dementia strategy: initial 2-year delivery plan - 2024 to 2026

Thematic Priorities

Everyone’s Story details the difference we need to make on each of these thematic priorities. Unlike the key deliverables, these thematic priorities will be part of our approach to longer-term improvement and change that we start to progress now and will follow into subsequent plans. During 2024-26 we will work with partners to change, improve, add value to, and learn from, the following thematic priorities:

Digital

Developments in digital technology, including citizen technology, are dynamic and move at speed. Whilst recognising the connectivity issues in some parts of Scotland, particularly in rural and island communities, digital can offer some relatively low-cost solutions that support people to continue to live the life they choose and where they choose.

How we will deliver:

• We will work with programmes sitting within the Scottish Government and COSLA’s joint Digital Health and Care Strategy to ensure that dementia is part of the discussions.
• Encourage and support the development of digital innovation through commissioned and funded programmes, including in information provision, workforce development and in supporting work on stress and distress in hospital settings.
• Promote and publicise digital innovation in contributing to the strategy’s outcomes.
• Support access to digital solutions, recognising that older people, social tenants and people on low incomes are less likely to have access to, or use, the internet.

Case Study – Alzheimer Scotland Virtual Reality (VR) Work

Virtual Reality (VR) is a novel yet impactful tool to engage, relax and stimulate cognitive functions through reminiscence, therapeutic and ‘bucket list’ experiences. Supported by funding from the Scottish Government, Alzheimer Scotland can offer Virtual Reality (VR) experiences across its 26 Dementia Resource Centres.

Gordon, diagnosed with Lewy Body dementia, is conducting his own trial to find out if using VR can induce calm dreams. Gordon’s dreams have been influenced by his TV viewing, leading to an incident where he sustained injuries falling out of bed while dreaming of combat. As a Royal Air Force veteran and an enthusiast of action/war movies, Gordon hopes that transitioning from intense media to an immersive serene VR experience will promote tranquillity in his dreams, potentially mitigating hazardous dream-induced situations, enhancing his overall wellbeing.

Alzheimer Scotland’s VR initiative showcases promising potential in tailoring VR experiences to the individual preferences and needs of people living with dementia, offering a unique approach to enhancing their quality of life.

Workforce

The workforce supporting people living with dementia and their care partners/unpaid carers is diverse. All those who deliver support to people living with dementia and their care partners/unpaid carers will have the needs of people they support front and centre.

This means ensuring people with dementia have the right services provided by professionals and staff who have had appropriate training to ensure high quality of service, treatment, rehabilitation and support and work from a rights-based and trauma-informed perspective.

The Promoting Excellence Framework was established as a national learning and skills framework for everyone supporting people living with dementia. Ensuring it is understood, prioritised by employers, and translated into accessible and relevant learning programmes for a range of roles and sectors, is a priority for this first delivery plan. Previous dementia strategies have supported programmes that develop knowledge and skills for particular professions and parts of the workforce. Successful programmes include:

• ‘Connecting People: Connecting Support’, the programme that brings together an Allied Health Professional Community focussed on transforming their contribution to dementia treatment, care and rehabilitation;
• the Chartered Institute of Housing’s Dementia Framework; and
• Dementia Champions and Ambassadors programmes, for those working in health care and social care settings respectively.

The value of professional and sector-specific workforce development is recognised. However, the dementia workforce doesn’t sit in isolation from wider workforce developments and pressures. The aspirational approach of the joint Scottish Government and COSLA 'Health and Social Care: National Workforce Strategy’ identified five pillars of the workforce journey which are:

Plan: evidence-based planning across the system, to ensure the right workforce numbers, with the rights skills, to provide the right support, at the right time and in the right place.

Attract: careers are attractive, with inclusive and diverse routes to recruitment, with clear progression pathways and where all are respected, empowered and valued for the work they do.

Train: the workforce is skilled, trained and supported to work agilely and flexibly, embracing new technologies and are informed by evidence to support a whole-person approach.

Employ: workforce report feeling valued and supported to deliver high-quality user-centred services, support and compassionate care.

Nurture: support for positive mental health and wellbeing across the Health and Social Care workforce.

A similar plan has been developed for the Mental Health workforce, with some clear links that can be made across the workforce who also support people living with dementia.

It is essential that national and local government continue to work closely together on issues related to the health and social care workforce to focus action on increasing capacity through recruitment and retention.

We will work closely with existing workforce governance and improvement groups, highlighting the importance of strategies and policy reflecting the needs of people who have dementia and their care partners/unpaid carers.

Case Study – HC One Care Home Dementia Ambassadors

Dementia Ambassadors develop knowledge and skills that support quality dementia care in care homes.

One resident became very agitated, irritable and upset, often crying and/or lashing out at staff when they were being supported with personal care.

The dementia ambassadors in the care homes encouraged staff to explore how they could change this experience for the resident. They recognised the resident’s previous personal care routine and using a PDSA (Plan, Do, Study, Act) approach, monitoring responses to any changes they made.

Through perseverance they discovered that the resident was becoming distressed if the staff providing the care were taller than them. By changing personal care provision to having staff who are the same height or smaller, the resident is now happier and often laughs with the staff during this interaction.

Addressing this issue has had a wider impact. The resident is happier, eating more, and socialising with the other residents. The changes have also led to reduced use of psychoactive medication for the resident.

How we will deliver:

• We will work with partners in National and local government, with the Scottish Social Services Council (SSSC), with NHS Education for Scotland (NES) and our university providers, and with professional networks, to establish a short life working group to:
  • further develop our understanding of the dementia workforce and scope the learning needs of the current and future dementia workforce, recognising its diversity in health and social care and beyond, from those working in varied settings such as care homes, hospitals, community hubs and people’s own homes to registered professional groups such as Allied Health Professionals, social workers and mental health professionals.
  • create a ‘roadmap’ of the existing rich sources of learning and skills programmes and resources that map against the Promoting Excellence Framework to establish the need for nuance and further development.

Challenging stigma

The stigma that surrounds dementia can impact negatively on people’s willingness and confidence to seek support. The strategy sets out the difference we need to make as:

• public awareness and understanding about brain health and dementia is raised and perceptions are changed to ensure people with dementia and their care partners/unpaid carers have their rights upheld in every part of their daily lives and wherever they are. Fear about presenting for and receiving a dementia diagnosis is reduced.
• the workforce across health, social care, housing and other frontline services increases its understanding of dementia and is better connected to ensure that those who provide services understand and respect the rights of people with dementia and their care partners/unpaid carers.
• a diagnosis of dementia is followed with clear, consistent quality information and support options, underpinned by inclusive communication approaches, including Post-Diagnostic Support, rehabilitation and other supportive treatments to ensure quality of service provision to people with dementia and their care partners/unpaid carers.
• employers have greater awareness of dementia and its impact on employees receiving a diagnosis and those with caring responsibilities, demonstrated by their sign-up to programmes such as Carer Positive and Dementia Friends.

Case Study – Development of The National Anti-Stigma Campaign

Delivering on one of the key outcomes for our Strategy, that ‘Scottish society has increased awareness and changed perceptions of dementia’, work has taken place to create a public-facing anti-stigma campaign that challenges commonly held preconceptions of dementia.

Following research which indicated the general public don’t understand that dementia is a progressive disease and that in the earlier stages, people can live independent, fulfilling lives, a focus was taken to increase awareness of the fact that maintaining relationships with someone with a diagnosis is an important part of helping them live well for longer.

The development of this has been in collaboration with members of the national Dementia Lived Experience Panel, with the initial campaign to be launched in 2024.

How we will deliver:

• As noted in the case study, work has already begun on a public-facing anti-stigma campaign. Partners in the campaign are the National Dementia Lived Experience Panel, Scottish Government and the Leith Agency. The campaign will be launched publicly during 2024.
• During 2024-2026, we will convene relevant partners to inform and shape a programme of information and awareness raising for employers, learning lessons from the Carer Positive and Dementia Friends programmes.

Brain health

As brain health and its focus on prevention, risk reduction and emerging treatments gains traction across Europe, the Scottish Government is supporting the work of Brain Health Scotland and the key messages of the Scottish Brain Health & Dementia Research Strategy.

We know that Scotland is uniquely placed to contribute to the brain health agenda. Our range of assets could, if harnessed in the right manner, see us become a hub of research and innovation, of greater societal literacy around brain health, and for early risk detection and diagnosis of dementia.

We also know that this area is the least defined of those we are prioritising in our initial plans for delivery, and therefore right to prioritise to enable progress. While much progress is being made, and will be made over the strategy’s lifetime, we need to consider where to invest our efforts in the first two years of our delivery.

Learning from research and practice in Scotland and beyond is critical and during the next two years we will follow developments across Europe and beyond whilst we support developments in Scotland.

Case Study – The ‘Stars: My Amazing Brain’ Programme Led by Brain Health Scotland

The My Amazing Brain Programme is a forward-thinking approach to help prevent dementia by promoting brain health awareness, through empowering children with the necessary knowledge and understanding of how to keep their brain healthy.

Through animations and activities, children imagine their brain as being full of stars, and learn that healthy habits like social activity, nutritious food, sleep, relaxation and head safety will keep their stars shining. It translates often complex research into actionable activities for kids and their families, while also dispelling the notion that it is never too early or late to look after your brain health.

The programme has been co-designed with parents, teachers and people with lived experience of dementia to offer learning opportunities in class and at home, through focus groups and expert advice. It has also taken an equalities approach, prioritising schools based in areas of higher deprivation and translating materials for delivering the educational sessions into other accessible formats.

How we will deliver:

• We will promote public health awareness (through work nationally and with our communities) of the importance of brain health at all ages, and the linkage between good brain health and a potential reduction in the likelihood of developing dementia.
• We will support an initial brain health service site in Aberdeen, launched in December 2023, to provide people in the area with a profile of their risk of developing dementia and how people are supported to use this information to access the right advice and, where applicable, further referral.
• We will work with colleagues in local and national government, our academic partners and lived experience networks to establish a cross-governmental; cross-sectoral steering group to help us understand the Scottish Government’s role in how we can contribute to the research and development of greater understanding around dementia risk identification, diagnosis, and treatment, including the trialling of new treatments which can slow the progression of some dementias, connecting to the new SIGN guidelines that detail guidance on, for example, delirium prevention and treatment.

Diagnosis and Post-Diagnostic Support

Scotland has a flagship policy and a track record of delivery on Post-Diagnostic Support (PDS). However, the proportion of people accessing PDS remains consistently low and we have heard that there are people who are not receiving the support they need. We need to address this gap and ensure that people, including care home residents who are diagnosed either before or during their stay in a care home, experience the signposting, referral process and experience of diagnosis and PDS as person-centred, setting them on a positive path that includes accessible options for peer support and effective self-management. This will enable people with dementia and their care partners/unpaid carers to uphold their right to participation in care needs assessment, future care planning, choosing and arranging care, support and treatment, including advanced decision making, embracing the principle of shared decision making and in accordance with the principles of Realistic Medicine and detailed in the SIGN Dementia Guidelines.

There is a mixed approach to both diagnosis and Post-Diagnostic Support (PDS) across the country, with much to learn about the impact of different approaches. During these first two years we want to establish and support good practice to become embedded in diagnosis and build on the impact of 10 years of PDS policy. The publication of the SIGN Dementia guidelines in November 2023 details the delivery of a person-centred diagnosis so we will work with partners using the guidelines to establish best practice including seamless connection from diagnosis to PDS, recognising the role of a diverse workforce and communities in supporting people to seek a diagnosis.

Case Study – The Orkney One Stop Diagnostic Pathway (led by Age Scotland Orkney)

Following consultation with people living with dementia and their families, efforts were made to establish a single point of access to support people from pre-diagnosis for as long as needed to address highlighted difficultly in navigating systems and knowing where to get help.

This is delivered via an innovative diagnostic pathway, through a GP with Special Interest housed in Age Scotland Orkney’s community hub enhanced by an Admiral Nurse service co-located in the community. People can receive their diagnosis in the community hub, which also hosts Orkney’s Post-Diagnostic Support Service. This direct linkage into onward PDS is critical to its adoption, with PDS support being open-ended to the point where people choose more intensive support.

People with lived experience, statutory and third sector partnerships, and collaboration, were key to implementation and success, helping to achieve its ambitions of enabling people to live life to their optimum in their own communities where possible.

How we will deliver:

• We will work with data specialists in Scottish Government, local government and Public Health Scotland to establish a ‘roadmap’ to improve data collection on diagnosis and PDS with the aim of publishing accurate data on the numbers of people living with a diagnosis and the proportion of those diagnosed who access PDS.
• We will work with partners to promote, monitor and support the implementation of the SIGN dementia guidelines on diagnosis and their impact on people’s experience of diagnosis with its enhanced focus on person-centred approaches, recognising the breadth of the workforce that the guidelines’ reach can be extended to.
• We will work with partners to shape how we can replicate/upscale innovative approaches to diagnosis such as those in Orkney and Dumfries and Galloway with the aim of increasing diagnosis rates and the quality of the diagnostic experience, including for people living in care homes
• Whilst there has been evaluation of some elements of Post-Diagnostic Support (PDS) policy delivery, to date, there has not been an independent evaluation of the policy as a whole including the impact of PDS on supporting people and their care partners/unpaid carers to plan for, adjust to and live the best life possible with dementia. We will commission an independent evaluation of the delivery of Scotland’s PDS which will take into account historical and current commissioning arrangements, delivery models, including what is covered by PDS such as changing housing needs, and data collection as well as the impact on lived experience.

Resilient communities

The role of communities in upholding people’s rights, in building individual and community capacity, in demonstrating creativity of approach and response and in directly supporting people to remain as active citizens and remain living at home and in their communities is a cross-cutting theme that acts as a platform for a number of the strategy’s ambitions and outcomes. Without strong communities, the rights of people with dementia and their care partners/unpaid carers, including respect for their dignity, beliefs, individual circumstances and privacy, would be severely undermined.

We are building on a significant investment and legacy established by the Life Changes Trust in this area including its work on defining characteristics of a Dementia-Friendly Community. The Dementia-Friendly Community Network offers a framework for more inclusive communities to develop. It is active in care homes, amongst carer groups and is promoting inter-generational work in 27 of Scotland’s 32 local authorities. The Network, alongside the Meeting Centres Scotland Network and Alzheimer Scotland’s network of Dementia Resource Centres, evidences the growing ‘map’ of community supports across Scotland, adding to the comprehensive network of support delivered by social landlords, community trusts, befriending organisations and others.

The growing network of Meeting Centres and community hubs reflects wider initiatives on 20 minute neighbourhoods, and other place based planning priorities that are enhanced by digital solutions to support connections, recognising the particular challenges faced by remote, rural and island communities. However, there remains a challenge in how to sustain community resources and this will

Case Study – Kirriemuir Meeting Centre and Angus Health & Social Care Partnership (HSCP)

Kirrie Connections Meeting Centre was the first of its kind in Scotland. It draws on the evidence based ‘Meeting Centres’ model of hyper-local dementia community support that is well established in the Netherlands. It is a local resource, operating out of ordinary community buildings that offers ongoing warm and friendly expert support to people and families affected by dementia and is governed in co-partnership with people living with dementia, their care partners, and partner organisations.

It delivers an adaptive programme of support and interaction, with all activities designed to help people adjust to the social, emotional and practical changes a dementia diagnosis brings. Active participation from families and care partners/unpaid carers is encouraged, offering practical assistance and peer support.

Kirrie Connections secured three years of core funding from Angus HSCP in 2021, demonstrating the recognition of its vital role. Additional HSCP funding was also obtained to support the establishment of Meeting Centres in other Angus towns. As a result, there are now four operational centres across the county, with three more currently in development.

be the focus during 2024-2026, led by the Resilient Communities Programme Board which will be accountable to the strategy’s governance structure.

Added to this is the need for a better understanding of the role of arts and culture in promoting and sustaining wellbeing. Initiatives such as Playlist for Life are grounded in evidence but more needs to be understood about the value and impact of creative activity across National and local government.

How we will deliver:

• Deliverable 6 details the establishment of a Resilient Communities Programme Board tasked with:
  • identifying and promoting existing good practice in community initiatives;
  • promoting consistency in access to community initiatives and the uniquely local capacity they generate;
  • identifying opportunities and gaps; and
• Allocating dedicated Scottish Government funding to enable a sustainable community infrastructure to grow across Scotland.
• The Programme Board will comprise representatives of existing community networks, namely Meeting Centres Scotland and the Dementia-Friendly Communities Network, together with people with lived experience and Chief Officers, ensuring the connection from national to local government and into communities is progressed.
• The Programme Board will be informed by the evidence from Meeting Centres Scotland, Dementia-Friendly Communities Scotland and Alzheimer Scotland’s network of Dementia Resource Centres, bringing local knowledge and connections to inform priorities.
• We will work with Integration Authorities, Health Boards and Community Planning Partnerships to understand and share existing good practice and to support community initiatives that help support people to remain at home and enable them to leave hospital timeously when assessed as clinically able.
• We will work with Integration Authorities to understand the reach of our dementia community resources, share evidence on their importance and success and support future development of these via the Programme Board.

The hospital experience

It is widely acknowledged that hospital stays can cause stress and distress for people living with dementia. Our investment in communities will strengthen their capacity to support people living with dementia to remain at home for longer, sustain their care partners/unpaid carers’ resilience in their caring role and better enable people to return home from a hospital stay when clinically able.

How we will deliver:

We will partner with a local area, at both NHS Board and HSCP level, to establish how to improve the hospital experience, including how to better avoid people living with dementia remaining in hospital when not clinically necessary. This needs to be part of wider system improvement and reform, recognising both the complexity of current pressures on the whole health and care system and developments in areas such as ‘Getting It Right For Everyone’ (GIRFE) and My Health, My Care, My Home.

Care partners/Unpaid carers

The value of unpaid care and the challenges faced by care partners/unpaid carers who care for people living with a dementia diagnosis are widely acknowledged in legislation, policy and practice standards. People with dementia and their care partners/unpaid carers have rights which should respected, protected, and fulfilled, embodied in the principles of Equal Partners in Care. As with other priority themes, the role, value and rights of care partners/unpaid carers are threaded through the whole of this delivery plan so this section is not presented as stand-alone.

However, further work is needed to understand and address the gap between policy commitments and lived experience, particularly in relation to the rights of care partners/unpaid carers to support their loved ones in hospital; to access support during crises and to improve awareness of care partners/unpaid carer’s rights amongst professional groups, including clinicians.

Care co-ordination has shown that care partners/unpaid carers can be better informed and supported, including during crisis. This forms part of our longer-term ambition for greater integration and collaboration to support people living with dementia and their care partners/unpaid carers to sustain their caring role, particularly as they face the pre-death grief often associated with caring for someone with dementia.

Case Study – Carer Positive Scheme

Since 2014, the Carer Positive scheme has sought to develop better workplace support for the many employees across Scotland who are juggling work with unpaid caring responsibilities in their home lives. It sets out a range of criteria, including peer support for carers, practical support or advice services and recognition of carers in HR polices.

Employers who participate become awarded as Carer Positive Employers in Scotland. This provides them benefits in terms of recruitment and retention and in supporting the health and wellbeing of a valued group of employees. Carers in turn can be better supported to continue to be critical members of the workforce alongside the caring responsibilities.

To date, over 265 organisations in Scotland have become recognised as Carer Positive Employers, between them accounting for almost 500,000 employees.

How we will deliver:

• We will work with colleagues in Scottish Government, local government, Social Work Scotland, Self-Directed Support (SDS) support organisations and the third and independent sectors via the established Social Work Scotland SDS Network to establish enhanced information and clearer routes to SDS for people living with dementia and their care partners/unpaid carers, recognising the need for specific improvements for people with language or other barriers to access.
• We will work with colleagues in Scottish Government, local authorities, Social Work Scotland and the third and independent sectors, including national carer organisations, to explore how more flexible and meaningful respite and short breaks can be offered to people living with dementia and their care partners/unpaid carers.
• We will work with colleagues in Scottish Government, local authorities, Social Work Scotland, NHS Education for Scotland (NES); with the Scottish Social Services Council (SSSC) and the third sector, including national carer organisations to map, promote and increase access to carer education, learning from existing local and digital resources and programmes such as the Carers’ Academy model.
• We will promote good practice evidenced through care co-ordination and other approaches that support care partners/unpaid carers to sustain their caring role in and with the support of their communities.