Dementia strategy: island communities impact assessment

Framing

Introduction to Island Communities Impact Assessment

This Island Communities Impact Assessment has been prepared to accompany the new dementia strategy for Scotland: Everyone's Story and inform subsequent delivery plans. At the stage of assessment, the initial 2-year delivery plan - 2024 to 2026 is considered within this assessment. The assessment has been carried out according to Scottish Government Guidance^[1] and duties within the Islands (Scotland) Act 2018^[2]. It will be updated as the policy delivery process progresses.

The Islands (Scotland) Act 2018 is only one of a handful of place-based pieces of legislation to focus specifically on islands in the world. The measures it contains, like the Island Communities Impact Assessment, are designed to meaningfully improve outcomes for island communities. An Island Community Impact Assessment (ICIA) is about testing any new policy, strategy or service which is likely to have an effect on an island community, which is significantly different from the effect on other communities. This became a legal duty on 23 December 2020.

The Islands (Scotland) Act 2018 defines an island community as a community that consists of two or more individuals, all of whom permanently inhabit an island (whether or not the same island), and is based on common interest, identity or geography (including in relation to any uninhabited islands whose natural environment and terrestrial, marine and associated ecosystems contribute to the natural or cultural heritage or economy of an inhabited island).

In December 2019, Scottish Ministers published the first ever National Islands Plan, which also needs to be considered when completing an ICIA. The plan sets out 13 strategic objectives which are practical, common sense, and aim to improve the quality of life for island communities. Fairness is a key value that underpins and reflects the Scottish Government's commitment to equality and human rights. The plan recognises that every member of society has a right to live with dignity and to enjoy high quality public services wherever they live.

The Scottish Government recognises the importance of ensuring policy making appropriately considers impacts on islands and rural communities. Scottish Islands and rural communities face particular challenges regarding distance from services, geographical limitations, connectivity and demography, which are evidenced and explored in this assessment.

In this context, the purpose of an Island Communities Impact Assessment (ICIA) is to ensure that islands and rural communities receive fair and equitable treatment, and that Scottish Government policy, strategy and service outcomes are tailored to their unique circumstances. This ICIA addresses stakeholder’s wishes for assessment of impact to expand beyond just island communities and to assess impact on rural communities too.

This Island Communities Impact Assessment (ICIA) presents evidence on the most significant potential impacts of both the Strategy and Delivery Plans.

Policy Aim and background

The Scottish Government has published three National Dementia Strategies since 2010. Following the pandemic there was an appetite from a broad range of dementia stakeholders for a new strategy produced by a process that placed a greater emphasis on the voices and experiences of those living with dementia and considered the challenges faced by island and rural communities. By developing a new strategy now, we also have an opportunity to connect dementia policy with other important areas of work such as the National Care Service, Housing to 2040 and Community Empowerment.

This new Dementia Strategy for Scotland and first 2-year Delivery Plan are important for us all. Despite encouraging clinical research and emerging treatments to slow and modify symptoms of Dementia, it is estimated that the number of people across the world living with dementia could increase by almost 50% every 20 years^[3]. Moreover, some estimates suggest one in three people born today can be expected to develop dementia during their lifetime^[4]. Irrespective of the type of dementia, the impact on a person’s life extends beyond their brain health to affect their whole life. Maintaining employment; financial security; independence and autonomy about how and where to live as the illness progresses, and relationships with family, friends and community are all affected to varying degrees.

In May 2017, the World Health Assembly endorsed the Global action plan on the public health response to dementia 2017-2025, declaring dementia a global public health priority^[5]. This presents both a challenge and an opportunity for how we uphold rights, civic participation, social inclusion, support, and care for people living with dementia in Scotland now and in future. With our ageing population, Scotland’s new dementia strategy is everyone’s story. We need to consider how the support we provide, the places we design, the homes we build and the communities we create allow us all to live happy, meaningful, and connected lives, regardless of age or stage of dementia.

This is a 10-year strategy which sets out a vision for how life with dementia can be experienced and the policy, services and societal changes that are needed to support this. The development and implementation of this strategy takes a rights-based approach, emphasising autonomy, self-determination, independence, equality, and choice. Mirroring this, the rolling programme of workplans will be informed, shaped, and reviewed through the governance structures and wider stakeholder engagement, continuing the approach of our National Conversation to make sure this remains everyone’s strategy from now until 2033. The strategy and subsequent delivery plan has a vision of a Scotland where people living with dementia have their strengths recognised, their rights upheld, and where they, their families and care partners are supported to live an independent life, free from stigma and with person centred care when and where they need it.

The impacts of the strategy and delivery plan will be measured against the difference we need to make as detailed in the strategy.

1. Dementia is recognised in public health and in practice as disease of the brain that affects a person’s whole life and those close to them. Diagnosis can bring significant mental health and wellbeing challenges that need to be acknowledged and addressed to ensure a person’s rights are upheld.

2. Policy makers, support and service providers, communities and society all have an understanding of dementia, including the importance of prevention and early detection, and are inclusive of people living with dementia, able to engage and respond confidently and appropriately, creating environments that enable people to live well with dementia.

3. People living with dementia and their care partners/unpaid carers have equity of access to high quality, information and advice, evidence-based treatment, care and support when and where they need it, including dementia specific palliative care, and have access to practitioners with appropriate dementia care knowledge and skills.

4. The human rights of people living with dementia and their care partners are upheld throughout their dementia journey.

5. People are supported by a skilled and knowledgeable workforce that accesses the highest quality dementia specialist education and training and implements evidence-based, including trauma-informed, practice

To begin to move us towards achieving these 5 points of difference we need to make, we have committed to the following key, funded deliverables by 2026:

1 A public facing campaign that challenges the stigma associated with dementia, co-produced with the National Dementia Lived Experience Panel. The purpose of the campaign is to promote better understanding and reduce the stigma associated with dementia that can inhibit people presenting for diagnosis; impact on take-up of Post Diagnostic Support; contributes to stress and isolation for care partners/unpaid carers and which affects the quality of interaction with public services.

2 Commission an independent evaluation of the Aberdeen Brain Health Service, supported by a cross governmental, cross sectoral oversight group.

3 Work with Public Heath Scotland, local and academic partners to add to the data we collect and publish on diagnosis and Post Diagnostic Support (PDS), including:

• The number of people receiving a diagnosis and the proportion of those diagnosed who access PDS;
• qualitative data on the impact of PDS and other supports; and
• demographic data that supports a strengthened focus on inclusion and equalities, to the benefit in particular of people with protected characteristics and those from marginalised communities (including care home residents).

4 Establish a short life working group to further develop current understanding of the workforces supporting people living with dementia, identifying any gaps. The short life working group will seek to establish a profile of the known learning and development needs of these workforces and of existing resources building on the Promoting Excellence Framework, it will present a view on ongoing and future learning and development approaches. It will also consider the links with recruitment and retention.

5 An independent evaluation of Scotland’s Post Diagnostic Support policy and delivery, including the perspective of people living with dementia and care partners/unpaid carers and those living in care homes. The evaluation will provide evidence of the value and impact of Post Diagnostic Support to date, helping inform future PDS policy, service planning and practice.

6 Establish a Resilient Communities Programme Board tasked with identifying priorities and allocating dedicated Scottish Government funding to grassroots and community organisations to enable a sustainable infrastructure to grow across the country. Accountable to the national dementia governance structures, the Board will comprise Chief Officer representatives from local areas, relevant national third sector and community networks and people with lived experience.

7 Establish a cross government, cross-sector steering group to help shape the Scottish Government’s role in contributing to the research and development of greater understanding around dementia risk, earlier dementia identification, diagnosis, and treatment, including the trialling of new treatments which can slow the progression of some dementias.

Assessing impact does not finish once the new strategy is published. It is important to monitor the actual impact of the strategy as it is implemented and revisit the assessment as part of any review. Assessment of the impacts of the Strategy and the corresponding Delivery Plans is an ongoing process, which will continue with every following delivery plan to be reviewed.

The Scottish Government and COSLA will keep this ICIA analysis under regular review, with new data and evidence analysed over time and the development of rolling two-year delivery plans in order to monitor the impact on people living in island and other rural communities.

Accountability/Responsibility

The Scottish Government and COSLA are responsible for ensuring that due regard has been given to the effects of new policies upon island communities.

We know that dementia can affect every aspect of a person’s life and that this extends to the impacts on care partners/unpaid carers and families. This means that we must work collaboratively with people with lived experience, across national government, local government, with professional bodies and with third and independent sector organisations and in and with the communities where people live and want to remain living.