Dementia strategy: island communities impact assessment

Decision making and monitoring

Recommendations and Findings:

Having considered the data and evidence gathered, this section focuses on considering the potential impacts – negative and positive – that the strategy and delivery plan might have on island and rural communities that are significantly different from the effect on other communities. Each of these aspects also relates to the wider commitments in the delivery plan around human rights and equalities. 

It is the intention and ambition that the considerations, outcomes, priorities, deliverables and actions outlined in the strategy and delivery plan will have a positive effect on those living in island and rural communities. However, potential barriers to equitable provision of, or access to, some of these policies have been identified. It is important to understand these and, if needed, take action to mitigate this, as best as possible to ensure these policies are equally accessible and to the benefit of everyone living with dementia, and to their care partners/ unpaid carers.

Person-centred

From diagnosis to end of life, this strategy’s ambition is that dementia diagnosis, treatment, support, and care in Scotland is high quality, person-centred and trauma-informed in all settings. It aims to ensure human rights principles underpin all practice, and have a positive impact on people’s lives including those in island and rural communities by endeavouring to ensure their individual circumstances, which may differ to those in an urban setting, are catered for.

Work on building resilient communities will hopefully see the development of more targeted support groups to meet the specific needs of communities with additional needs including those with learning disabilities and sensory loss. This is particularly important for island and rural populations who tend to have an older demographic than urban areas, and thus are more likely to have members of the community experiencing age-related sensory loss.

The strategy, furthermore, champions, equity of access to appropriate quality treatment, support, and care when and where needed for those in island and rural communities. However, it is understood that overcoming the identified issues of grid, utilities, digital and travel barriers to fully provide equity of access in island and rural communities will take a considerable amount of time and work and improvements might not be seen within the initial two-year period of the first delivery plan, but it is the intention of the first 2 year delivery plan to lay the building blocks, allowing for measurable impact and improvement during the 10-year period of the strategy.

People living with dementia and their care partners/ unpaid carers in island and rural communities highlighted the importance of accessible information and the support they require to enable them to exercise their right to participate in decisions which affect them. The strategy endeavours to make a positive impact towards this by highlighting the importance of ensuring people have access to information and advice on prevention and early detection of dementia. Equity of access is also prioritised as the strategy wants to ensure people get all the information they need, in a way that is accessible for them, to make informed decisions about their treatment, care, support and housing options.

The person-centred approach of this strategy and delivery plan recognises people’s rights and values by putting people at the centre of care by wanting to ensure people are physically comfortable and safe, recognising that housing security and sustainability and the ability to meet rising living costs are not assumed.

Additionally, the person-centred approach championed in the strategy recognises individual circumstances by providing emotional, practical, and financial support for care partners and families, including bereavement support. This is of particular importance to those living in island and rural communities, where the cost of living and further implications of austerity have reduced people’s financial capacity. It is, however, important to acknowledge the current financial climate and acknowledge the financial constraints that will mean a focus on improvement of systems may not be a priority for some in island and rural communities especially in the first two years covered by the first delivery plan of this strategy.

Additionally, overcoming deep-rooted societal stigmas and discrimination will be difficult and take time, and internalised stigma barriers will make some people feel unable to accept support even if they receive fewer practical barriers to receiving help. Moreover, intersectionality plays a role in the extent to which people face compounding factors impacting their adoption of care and support. A person-centred approach aids being able to recognise these compounded factors, but will only be a start in reducing their impact on individuals and so this might benefit from being a priority in a future delivery plan. It is also worth noting that although the strategy and delivery plan are committed to equity of access, there are undoubtedly geographical barriers that will make successful improvement more challenging due to factors relating to rurality, as discussed previously.

Challenging Stigma

The strategy endeavours to challenge societal stigma, which can erode the respect for and protection of people’s human rights within island and rural communities, by promoting public awareness and understanding about brain health and dementia by changing perceptions and by endorsing a national anti-stigma campaign and educational programs aimed at school aged children. As fear about presenting for and receiving a dementia diagnosis will likely be reduced if people are assured they will be treated with care, dignity, respect and equality once diagnosed with dementia. Ensuring the intended message of an anti-stigma campaign is fully realised in communities and observable by system improvement in island and rural communities may be made easier through the tight-knit and familiar nature of many communities.

However, it must be considered that the pressure placed on services may make it difficult for service providers to give enough consideration to realising and taking practical steps to implement the message of the anti-stigma campaign, to make it fully effective.

The intended tackling of perceptions and improvement in the understanding of dementia, prioritised in this strategy and the first delivery plan, will hopefully allow employers to have greater awareness of dementia and its impact on employees receiving a diagnosis (and those with caring responsibilities). This ideally would see more employers signing up to programmes such as Carer Positive and Dementia Friends. Having their right to be helped attaining and maintaining maximum financial independence and vocational ability be upheld is important for many people living with dementia in island and rural communities, where many could be experiencing poverty or are struggling financially with the cost of living. It is also critical to keeping them well for longer, and reducing the potential risk of adverse mental health impacts for receiving a diagnosis alongside losing their vocation.

By challenging stigmas and misconceptions surrounding dementia, the strategy seeks to support a workforce across health, social care, and housing to have an increased understanding of dementia and allow the workforce to become better connected giving people living with dementia the right to health and social care services provided by professionals and staff who have had appropriate training on dementia and human rights to ensure the highest quality of service. This is particularly important in island and rural communities with an often-older demographic than urban areas, more likely to experience a greater proportion of dementia within their community.

Also, those people experiencing dementia, be it a care partner/ unpaid carer or someone with a dementia diagnosis, who perhaps feel isolated in their island or rural community, will as a result hopefully have greater opportunity to engage with people and services who understand and can relate to their experiences with dementia.

The delivery plan commits to a public-facing campaign that challenges the stigma associated with dementia, co-produced with the National Dementia Lived Experience Panel. The campaign is designed with the intention to reduce the stigma associated with dementia that negatively affects quality of life and often inhibits people presenting for diagnosis, inhibits 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.

It should be noted that the interests of island and rural communities are represented by members of the National Dementia Lived Experience Panel who are based in island and rural communities. They have brought this perspective to the anti-stigma campaign and will be able to advise about perceptions in island and rural communities, thus ensuring messaging is appropriate and the campaign has a greater positive impact.

Brain Health

The strategy aims to contribute to, and the first delivery plan prioritises, a better understanding of the complex impact of dementia on our brains and how to promote key messages about how to protect brain health throughout life. This includes spreading awareness that some forms of dementia could be delayed or prevented by modifying life circumstances and lifestyle. This might have a positive impact on people in island and rural communities living with dementia and their care partners/ unpaid carers when it comes to their right to be provided with accessible information, however, it must be considered that access in rural and island communities to key messaging regarding brain health may be limited by access to technology and broadband connection if those living in island and rural communities are physically unable to travel to receive information on brain health.

Through the delivery plan, we have committed to undertaking an independent evaluation of the Grampian Brain Health Service, supported by a cross governmental, cross sectoral oversight group. This is a new innovative model focusing on a more preventative, risk reduction approach. An independent evaluation will allow for learning and insight about the value and practicality of this service model including questions of accessibility, equity of access, people’s experiences and applicability to more rural locations. As the service is based in Aberdeen and takes referrals from a wide geographical rural area, these demographics and accessibility to service provision will be reflected in the learning from the service uptake.

The strategy intends to ensure people living with dementia and their care partners/ unpaid carers are supported to have opportunities to participate in research, including informing and designing research and that specific populations known to be at increased risk are supported to engage with brain health services. Moreover, connections with, and support to, Scotland’s research and academic communities, members of which are from Island and rural communities, continue to inform the delivery of this strategy.

The delivery plan commits to work with Public Heath Scotland and our academic partners to add to the data we collect and publish on diagnosis and Post Diagnostic Support (PDS), including qualitative data on the impact of PDS and other supports and demographic data that supports a strengthened focus on inclusion and equalities. This work is expected to have a positive impact on people living in an island and rural community reducing the ‘invisibility’ of island and rural communities in research and data.

However, it is important to be cognisant of the challenges that arise from specific populations known to be at increased risk (i.e., women and ethnic minorities) having conflicting responsibilities, such as being a full-time carer unable to take respite, which prevent them from taking part in research. The added time and cost of travel for those living in island and rural communities makes accessing research and having an input into the design of research more difficult. Those from low socio-economic backgrounds, which include many from island and rural communities, may also face challenges accessing and informing research as limited financial resources, or the use of technical language may pose a barrier to them participating.

The strategy outlines the difference we need to make in relation to brain health including exploring options for developing robust, multi-disciplinary and multi-agency care pathways, learning from research and practice. In turn, this should lead to a more joined up approach to care coordination for island and rural communities.

Diagnosis

The strategy is committed to making a positive impact by setting out the intentions that:

• A timely, person-centred diagnosis, communicated sensitively and recognising the person’s goals and preferences, is available for every person with dementia.
• At the point of diagnosis people will be referred, or directly connected to, post diagnostic support, in whatever form each person chooses and is relevant to the stage of their disease.
• People will be offered a treatment plan with arrangements for regular monitoring and review detailed.
• People undergoing diagnosis and their care partners/unpaid carers have access to emotional support, acknowledging that there is often heightened anxiety or confusion in the lead up to the prospect of a formal diagnosis, as well as mental health consequences and trauma as a result.

The ‘biopsychosocial’ approach to diagnosis and treatment emphasised in the strategy recognises that, whilst dementia is a progressive brain disease, it affects the whole person. This underpins everyone’s right to be treated with respect and dignity throughout the diagnosis process. However, it is important to consider that the geographical restrictions facing those in island and rural communities may mean that access to regular monitoring and reviews is restricted.

The strategy aims to encourage access to timely, person-centred diagnosis that is consistent and equitable throughout Scotland but allows for flexibility to suit the locality. This includes diagnosis delivered by a broader range of those professionally qualified than current arrangements and delivery of diagnosis in a wider range of settings such as community hubs and care homes. This would be expected to have a positive impact on those in an island or rural setting by allowing greater affordances for the geographical limitations many face. However as explored above , research from 2018^[31] acknowledges challenges for service providers in local island and rural communities. It is acknowledged that, in order for principles of equality to be upheld, new services need to effectively address challenges such as distance, communication and workforce deployment issues.

The strategy endeavours to have a positive impact by understanding the importance of recognising a person-centred approach to diagnosis through ensuring that individuals and their care partners/unpaid carers be supported up to, and throughout the diagnosis process, recognising the mental health and wellbeing implications of receiving a dementia diagnosis. This is important for those living in island and rural communities as some people living with dementia and their care partners/ unpaid carers face isolation and poor mental health, exacerbated by the Covid-19 pandemic.

The strategy strives for individuals to be respected, their concerns taken seriously, and be assumed to have capacity to ask for and understand a dementia diagnosis. This empowers people by supporting them to realise participation in care needs assessment, planning, support and treatment, and advanced decision making. This would have the potential to make a positive difference to those living in island and rural communities who often have unique living arrangements and daily practices like coastal walks.

To achieve this, the delivery plan commits to work with partners to add to the data we collect and publish on diagnosis. As it is acknowledged that the specific number of people living in Scotland with dementia is currently unknown, with prevalence rates ranging from 70k to 95k, depending on the study. In addition, the way the data is collected is not uniform and there is currently no detailed data publicly available breaking down diagnosis by for example geography. Access to updated data and evidence, focussed in the right areas, will develop our shared understanding of dementia in Scotland.

This will allow us to more effectively assess the extent to which our support is targeted in the right areas and is responding to the additional barriers being faced by particular groups. It will also enable a better understanding of the experiences of those in island and rural communities. It is expected improvement will be seen in this through utilising existing data as part of a linkage project to create a dementia ‘index’, and exploring how we can in future include demographic data. Such efforts will support a strengthened focus on inclusion and equalities.

Post diagnostic support (PDS)

The strategy aims to ensure Post diagnostic support (PDS) is available and accessible to people following a diagnosis for a minimum of 12 months, irrespective of where they live or how old they are. Post diagnostic support (PDS) should be person-centred and trauma-informed, based on what people want and need at the time they access it. This is expected to benefit people living with dementia and their care partners/ unpaid carers living in island and rural communities equally as principles of equality of access are embodied as there is an emphasis on community-driven support which allows inclusion for people with dementia wherever they may be.

Furthermore, the strategy aspires to equitable access to Post-Diagnostic Support (PDS) irrespective of factors such as the person’s age, disability, ethnicity, residence, and ability to use technology to engage with support. And that people can choose how and when to take up their post diagnostic support once they have been informed of the options that are available in their locality. This may include the 5 Pillars Model of Post diagnostic support (PDS) delivered by an Alzheimer Scotland Link Worker, participation in a Meeting Centre, peer-led support as part of a Dementia Friendly Community or post diagnostic support delivered by an Allied Health Professional Community Psychiatric Nurse or other health or care professional. This recognises the central role community networks (often more depended on in island and rural communities), health and social care professionals and organisations can play in developing and delivering person-centred post diagnostic support.

The strategy and first delivery plan intend to make a positive impact towards ensuring people with dementia can access the best quality service, free from stigma, by prioritising understanding the dementia workforce and encouraging workforce development programmes to include themes of understanding of purpose, availability, and acceptance of post diagnostic support. However, it is acknowledged that those in island and rural settings face retention issues of trained professionals, though retention issues are faced across Scotland including in urban areas, it is often harder to draw professionals to island and rural settings, which often results in a lack of available trained professionals to deliver these services.

Whilst there has been some 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. So, to best understand PDS and how it is delivered and where to focus improvement efforts, the delivery plan commits to commissioning an independent evaluation of the policy and delivery of Scotland’s PDS. The evaluation will be an opportunity to consider the current quality and experience of PDS in island and rural communities and how any future services can make improvements to quality, access of service and take people’s experiences into account.

This strategy aims to make a positive impact towards supporting people living with dementia and their care partners/ unpaid carers to live as independently as possible with access to recreational, leisure and cultural life in their community by detailing that Post diagnostic support (PDS) includes self-management support that empowers people to manage their health and wellbeing, day by day, as effectively as possible, including via peer support. This is particularly important for those in island and rural communities who have distinct cultural and recreational practices, as well as a strong reliance on community group networks for support.

The strategy considers access to social and legal services to enhance autonomy, protection, and care by highlighting Healthcare Improvement Scotland’s (HIS) iHub’s Quality Improvement Framework (QIF) and its adoption as an affective quality measure. The QIF includes details about key elements of quality Post diagnostic support (PDS) such as discussions on eligibility for welfare and benefits, arranging Power of Attorney and Future Care Plans. However, it is acknowledged that access in rural and island communities to key messages regarding social and legal services may be limited by access to technology and broadband connection if those living in island and rural communities are physically unable to travel to receive information on legal services.

Dementia care and support

The experience of people living with dementia whose symptoms have advanced is associated with the later stages of the illness, when the complexity and severity of dementia-related changes in the brain lead to recognisable symptoms associated with dependency and an increase in health and social care needs and risks. Scotland’s national dementia Scottish Intercollegiate Guidelines Network (SIGN) guideline detail that people at this stage need expert health care, more intensive social work assessment and support, nursing and palliative care assessments together with insights from carers and others, particularly when the person has difficulty communicating their own needs and emotions. This applies across our communities, including island and rural areas, and efforts to understand and monitor the implementation of the guidelines will be expected to account for geographical differences in delivery.

The strategy endeavours to make a positive impact by committing to ensuring that people living with dementia and their care partners are supported to stay as connected and active in and with their community as they choose. As well as by the intention to ensure people are supported to make informed choices about their home, including how to plan a timely move or stay in their own home for as long as possible, with guidance about how to make suitable home adaptations and arrangements to access home adaptations are clear and accessible, regardless of tenure. The strategy aims to make a positive impact across health, social care and housing in island and rural communities by encouraging maximising the use of new and emerging health and technology innovations, including citizen tech such as Alexa, to help enhance people’s lives, complementing the crucial importance of skilled and compassionate human interventions.

The strategy seeks to recommend people with dementia and their care partners have the support of multidisciplinary and multiagency teams to co-ordinate their care and support and ensure their general health and mental health is supported. This includes regular follow-ups with their general practitioner (GP) practice as well as clarity of communication and coordination between services. And that community networks and organisations, such as Meeting Centres and Resource Centres, are accessible, inclusive, sustainable, and recognised for their role in supporting people and their families, particularly in the early stages of dementia for those living in island and rural communities.

The strategy reflects Getting It Right For Everyone (GIRFE) principles and promotes the new Dementia Scottish Intercollegiate Guidelines Network (SIGN) guideline. The GIRFE principles and the SIGN Dementia guideline set out to ensure people are supported to navigate through treatment, are offered support and care that will uphold their quality of life and what’s important to them. This may include aiding employment, legal procedures to express preferences, their home and future housing options including adaptations, peer support and community networks, arts and culture, staying well, both physically and mentally, and care at home and care when they can no longer live at home. This is particularly important to those living in island and rural communities who may have to leave their island home or have financial difficulty adapting their home and environment to care for someone with dementia.

The strategy seeks to make a positive difference by emphasising that support and care is a partnership between the person living with dementia, their care partner and the identified professional, throughout the dementia experience. In keeping with this highly personal approach, the delivery plan prioritises ensuring sector-based workforces access and understand evidence-based biopsychosocial interventions as part of dementia education and training, remaining cognisant of the environment and that, the retention issues those in island and rural settings face.

The strategy supports frameworks such as Standards of Care for Dementia in Scotland, Scottish Intercollegiate Guidelines Network (SIGN) guidelines, Getting it Right for Everyone (GIRFE) and the need for anti-discriminatory practice and cultural sensitivity are familiar to practitioners (including those sensitive to island and rural cultures and practices), service planning and commissioners, including providers and encourages they are used as the benchmark for commissioning and good practice across housing, care, health and community services. Moreover, it encourages Scotland’s 10 Dementia Care Actions in Hospitals^[32] are adopted as a benchmark for good practice in dementia treatment and care in hospitals 10 care actions.

The strategy promotes specialist dementia training, benchmarked against the Promoting Excellence Framework, for staff working in health and social care settings as well as housing. Furthermore, the strategy aims to makes a positive difference by promoting training in dementia-specific palliative care and access to palliative care guidelines are available to all health and care staff caring for people with dementia. As well as that care pathways for advanced dementia are informed by, and connected to, Getting it Right for Everyone (GIRFE) and the wider Scottish Government Care and Wellbeing Portfolio programme. This ultimately aims to create a greater quality of care for those with dementia as enhanced levels of knowledge and skills are evidenced in Advanced Care Planning processes and plans.

The strategy emphasises incorporating a more holistic approach to advanced care. This includes integrating Multi-Disciplinary Teams (MDTs), including dieticians and speech and language therapists in managing common conditions such as weight loss and swallowing difficulties, into care planning and carer support and the promotion of non-pharmacological interventions to improve cognition, social engagement and quality of life and decrease stress and distress. Furthermore, acknowledgment of the need for Reminiscence Therapy, Cognitive Stimulation Therapy and, Playlist for Life, to form part of education, training, and improvement of practices in residential settings should ensure people are part of and receive high quality services. This would make a positive impact to those living in island and rural communities who will be able to access a greater variety of services beyond purely medical-based interventions which may face challenges in distribution in island and rural communities due to infrastructure issues considered above. We are also committed through our initial 2-year Delivery Plan to take forward a short life working group to explore how we can expand the training and education available to all members of the dementia workforce. This will expand the usage of the Promoting Excellence Framework, including the Enhanced and Expertise in Dementia levels, and support those working with people living with dementia whose symptoms have advanced to be able to provide better quality, more person-centred care.

The strategy proposes a greater number of long-term care options for people living with dementia are explored and costed with partners, increasing choice and control about how long-term care needs are met. Financial empowerment for those with dementia is underpinned by quality, accessible information and advice on the cost of residential care for self-funders being freely available to all people who require it, which is particularly important to those in island and rural communities who face greater daily expenses compared to those in an urban setting. To allow people with dementia to attain and maintain maximum independence, the strategy suggests housing providers and arrangements for housing adaptations become more proactive and preventative to both prevent unnecessary hospital admissions and support people to return home following hospitals stays. We are also committed to reducing the number of people requiring healthcare interventions in the first place. This includes working with partners such as CIH Scotland to develop dementia-friendly housing, including in our rural and island communities, in line with its Living Well at Home report.

The strategy calls for people living with advanced dementia in care homes to have equitable access to multi-disciplinary co-ordinated support, including rehabilitation and other Allied Health Professionals (AHP) specialisms, the same as those living in their own homes. The strategy furthers this by stating people living with dementia and their care partners should have equity of access to future care planning, palliative care, care around death and bereavement support. However, it is acknowledged that this is likely limited by a lack of staff to provide care in island and rural communities. Furthermore, some islands like Shetland only have care homes as opposed to nursing homes, which will impact the level of care available for those needing care.

Caring

The strategy recommends Post diagnostic support (PDS) for care partners/ unpaid carers as well as people living with dementia to cover both practical issues such as housing options and adaptations that support people to stay in their own home, as well as emotional support in recognition of the ‘living grief’ and bereavement that many care partners and families experience.

The Carers (Scotland) Act 2016^[33] aims to ensure that unpaid carers have choice and control about what care they can provide and can access support, including preventative support, to help ensure the caring role is manageable. The Act extends and enhances the rights of carers to help improve their health and wellbeing, so that they can continue to care, if they so wish, and have a life alongside caring. To support care partners/ unpaid carers to live as independently as possible the dementia strategy suggests that flexible care and support be available to all unpaid carers/ care partners, including ‘day services’ and other forms of short breaks and respite.

Care partners/ unpaid carers will benefit and feel empowered by the strategy through calls for equitable access to information. The strategy proposes advice and guidance on health and technology innovations and solutions be embedded in Post diagnostic support (PDS) and reviewed with people and their care partners throughout their progress through dementia. Additionally, it advocates the knowledge and skills to upskill care partners in therapeutic support held within the Allied Health Professional (AHP) community be widely shared through Meeting Centres, Dementia Resource Centres, Carers’ Centres and Dementia Friendly Community Networks. These intentions recognise care partner/ unpaid carer education is an investment which will support people living with dementia to live the best life possible. This is important in island and rural communities where those living with dementia may be more reliant on their care partner or community to meet some of their care needs compared to someone living with dementia in an urban setting.

The strategy recommends that care partners/ unpaid carers are informed of and supported to access all Self-Directed Support (SDS) options where appropriate and identified through the support plan. Local assessment of care partners’/unpaid carers’ needs must, in common with assessment of the needs of people using social care support services and supports, involve the person themselves in planning support, including when their caring role ends. Having appropriate support in place for care partners/ unpaid carers helps them fulfil their right to the highest attainable standard of physical and mental health.

Where care partners/ unpaid carers feel their rights have not been met, the strategy calls for access to independent advocacy to be widely available and publicised across dementia services and community networks. This could present a positive impact for those living in an island or rural setting as this enables care partners/ unpaid carers to enhance their autonomy realised through community networks which are heavily utilised in island and rural communities.

Further considerations from additional engagement

To support the Impact assessment process we also ran additional online workshops specifically about the various impact assessments for stakeholders and people with lived experience to join and feed into the development process. They provided additional considerations and perspective to consider when developing future policy and thinking about how to deliver it in this area.

Issues of transportation and housing arose. It was suggested that transport services aren’t structured to meet people's needs and enable cultural enjoyment. Moreover, cuts to public transport remain routine and can result in public transport not reaching points of access for appointments. As well as a higher cost of living in island and rural areas making it harder for people to remain in their homes, a lack of housing for professionals in rural communities was cited as a barrier to encourage people to move to the islands, and subsequently means those with dementia rely heavily on agency staff for care. Issues regarding transportation and housing require different departments within the Scottish Government to improve policy and practice.

A key area to address to mitigate against potential inequalities and impacts of this strategy and delivery plan on island and rural communities is data collection. A lack of data can render some groups invisible and makes addressing issues of inequality difficult as inequalities within island and rural communities may fail to be identified. Areas of interest which emerged during our consultations were further explorations into the geographical variables in dementia risk, diagnosis and care. This includes understanding the impacts of air pollution on dementia risk and care. Performing a data gap analysis will help to determine what data is available and what data is needed.

Issues with dementia remaining undiagnosed due to a lack of trained medical professionals in island and rural areas were highlighted. This results in people in island and rural areas entering care homes at an earlier stage and facing further difficulties to receive a diagnosis once in a care home. Ultimately this can mean some people never receive the post diagnostic care they require. A suggested mitigation was well sighted centres of excellence and mobile centres of excellence – where all of the diagnostic and care professionals come together to a certain place, going to where the need is. Rural mobile services have been tested in small rural villages in North Wales. Taking and reflecting from examples of great practice is vital to ensure island and rural communities can receive equity of care.

Scottish Government was urged to listen to and enable bottom-up community development from local areas, with a further need to include a greater focus on economic disadvantage and the specific issues experienced by island and rural communities.

It will be necessary to revisit this Island and Rural Communities Impact Assessment to further consider suggestions such as the above that might not be in the current scope of the first 2-year delivery plan and to take account of any changes that occur through the policy development because of new data being made available. This ICIA is to be viewed as requiring regular review and updating.

Anticipated Impacts

The Strategy and Delivery Plan aim to improve the lives of people living with dementia and care partners/ unpaid carers of people living with dementia by implementing policies to allow people to be included, involved, and contributing citizens.

However, it can be acknowledged at this stage that there is felt to be limited routinely collected disaggregated data on people living with dementia. Recognising the challenges this poses to developing impactful and effective policy making, it was suggested further research would contribute to a better understanding of the strengths and limitations of rurality on those living with dementia and those who are care partners/ unpaid carers of people living with dementia and understanding what is collected and working with partners to collect more is a priority in the first delivery plan to ensure this strategy and future policy do not have a disproportionate effect upon an island community.

This assessment of impact of this new strategy and delivery plan will help anticipate the likely effects of this strategy and delivery plan on different dementia communities and groups in island and rural communities. However, the reality is that the actual impacts will only be known once the strategy and delivery plan have been introduced and implemented. Therefore, systems to enable monitoring and review of the actual impact form an important part of impact assessment and should be clearly set out and understood by those who are accountable for the impacts of this new dementia strategy and delivery plan.

So, as part of the commitment to improving data we collect, we will aim to collect data on people living with dementia across the whole of Scotland that includes geography and equalities considerations. The commitment to rolling two-year delivery plans will allow us to effectively monitor this data on an ongoing basis to inform policy further and monitor whether we are making the difference we want to make.

What have we done:

A new National Dementia Strategy Delivery Group was established to inform and oversee the development of this strategy and following delivery plans, chaired by the Scottish Government’s Chief Social Work Advisor. The group is multi-agency, engaging a wide range of backgrounds and interests including clinicians, the Third Sector, local government, providers of residential care, academia, Convention of Scottish Local Authorities (COSLA) and Scottish Government colleagues covering areas such as planning and the National Care Service (NCS).

The National Dementia Lived Experience Panel was established, drawing membership from different backgrounds, experiences, and places, some of whom live in rural and island locations. This Panel has worked alongside local and national government, and with wider partners, to develop this strategy and delivery plan. The strategy and understanding of issues faced by island and rural communities is enriched by their experience and contribution.

We have conducted an Equalities Impact Assessment, A Fairer Scotland Duty Assessment and Human Rights Impact Assessment to be read in tandem with this Island Communities Impact Assessment.

Monitoring and Review

The Scottish Government and COSLA will keep this ICIA analysis under regular review, with new data and evidence analysed as we improve data collection, in order to monitor the impact of the new National Dementia Strategy and Delivery Plans as they progress.

Our governance structures have been established to both steer the delivery of this plan and hold us to account for its delivery. We will share progress and establish a monitoring and evaluation framework within the governance structures. We must make arrangements to review and, where necessary, revise existing aims and practices set out in the new dementia strategy and delivery plan. A rolling review of impact on island and rural communities within the dementia sphere should be based on proportionality. For example, prioritising impacts that have a high relevance to human rights and potential infringements on human rights.

Whilst we recognise that some areas of policy may be developed nationally, the majority of change happens locally. The relationship between Scottish Government, Local Government, community organisations and those with lived experience will be critical in delivering the ambitions of the strategy.

We will continue to develop positive working relationships that are focussed on outcomes; acknowledge that those living and working in localities are best placed to understand and shape local responses, and that people living with dementia are experts by experience.