Wiltshire Dementia Strategy 2023 to 2028

Dementia is one of the biggest challenges of our time.  Almost one million people live with dementia in the UK and 1 in 11 people over the age of 65 have dementia. Dementia costs the UK economy £25 billion per year in terms of health and social care costs and the contribution of unpaid carers¹. In 2022, dementia was the leading cause of death in the UK². Many dementias do not yet have a treatment to prevent, cure or slow progression.

In Wiltshire, we have one of the fastest growing numbers of older people. Between the 2011 and 2021 Censuses, Wiltshire was one of only three local authorities in the South West whose 65+ population grew by more than 30%. This is highly relevant to this strategy because age is the biggest risk factor for developing dementia, although dementia is not a natural part of ageing. 

Wiltshire Council's vision is to create strong communities where people can fulfil their potential, be actively involved and included in their communities, make informed decisions, have control over their lives, and be valued and included within society. In Wiltshire, we start from the strengths, talents and assets that each person has - this means looking beyond their diagnosis or needs, however important these may be. This vision reflects what people in Wiltshire have told us they want in order to live well.

We take a One Council approach, working as one team to deliver our priorities. This is especially important for dementia, where prevention, early intervention and community awareness are so important. Everybody has a role to play in making Wiltshire a dementia-friendly County.

This strategy describes how we will work together to make Wiltshire an inclusive, vibrant, supportive place for people with dementia and their family members and carers to live. It is underpinned by prevention and early intervention, tackling inequalities, understanding our communities, and promoting independence.

In this strategy, you can expect to find information about:

• our vision: why this strategy is so important and how we will work together with carers over the next five years
• local and national context:the impact of dementia on our residents and communities, the economy, and people who provide care; a summary of our local population and how we think it will change over the coming years
• co-production: how the views of people with dementia, their families and carers, the public and professionals have shaped this strategy, and how they will continue to guide and monitor the work we do
• our priorities: describing the five priority areas which have come out of the co-production work
• how we will deliver the priorities:a more detailed look at what we will do in the next five years, with measurable outcomes

¹ See Appendices for detailed information about the cost of dementia

² Death registration summary statistics, England and Wales: 2022 (ons.gov.uk) (opens new window)

This strategy builds on the 2014 Wiltshire Dementia Strategy, whose aim was that all people with dementia and their carers and families in Wiltshire are treated as individuals and can access the right information, care and support at the right time so that they can live well with dementia within supportive and understanding communities.

Building on these strengths and improving outcomes for people with dementia and carers will mean working across our communities to ensure that dementia is understood, the strengths and potential of people with dementia are valued, and the needs of people with dementia, and carers, are met. 

At the heart of this strategy is the recognition that whilst dementia can have a significant and often devastating impact on the person and their loved ones, a person with dementia does not cease to be the person they once were. The challenge for people supporting the person with dementia is to find ways of staying connected with that person.

This strategy reflects national policy and guidance, but without the huge contributions of local people, it would not be possible to produce a plan which works for people in Wiltshire. The strategy puts the voice of people with dementia and their families, carers and friends at the forefront of our plans.

This strategy sets out a vision of a dementia-friendly Wiltshire, where:

• we work together to make Wiltshire an inclusive, vibrant, supportive place for people with dementia, and their family members and carers, to live
• our work will be underpinned by prevention and early intervention, tackling inequalities, understanding our communities, and promoting independence

It is an all-age strategy, which means it will meet the needs and wishes of younger people with dementia, as well as older people.  Although the number of people under 65 who are living with dementia is relatively small, there are very specific challenges that face people of working age who get a diagnosis, including issues relating to employment, money, parenting and caring responsibilities, wider relationships etc. People with Down's syndrome are more likely to develop dementia, and the age of onset is on average 30 to 40 years younger. This strategy seeks to address these challenges. It also recognises that people of all ages, including children and young people, may be carers for people with dementia.

What is dementia

Dementia is an umbrella term to describe a set of symptoms caused by a number of conditions. The most common symptoms are memory loss, confusion (e.g. about time and place), difficulties in planning and organising, problems with language and understanding, and in some cases changes in a person's mood or behaviour.

95% of people with dementia have one or more of four main diseases¹:

• the most common cause of dementia is Alzheimer's disease, which accounts for around two thirds of people living with dementia
• up to 20% of people with dementia have vascular dementia
• around 15% have dementia with Lewy Bodies
• fewer than 5% have fronto-temporal dementia

The likelihood of developing dementia doubles every five years after a person's 65th birthday. However, dementia does not only affect older people (research suggests that around 5% of people living dementia are under 65). It is not a natural part of ageing. 

Around one third of the risk of developing Alzheimer's disease can be reduced by making changes to one's lifestyle², and vascular dementia is strongly associated with other vascular risk factors such as smoking, obesity, lack of exercise and high blood pressure. Research shows that changes to the structure of the brain may occur at least 10 years before overt symptoms become manifest. This means that people in their 30s and 40s can proactively address risk.

Recent research by Public Health England found that people with dementia are more likely to live with other health conditions than people who don't have dementia. The study also found people with dementia are more likely to have multiple health conditions. A total of 22% of patients with dementia had three or more comorbidities and 8% of patients with dementia had four or more comorbidities, compared to 11% and 3% respectively in the all-patient group.

Local profile

The 2021 Census showed that Wiltshire's population is ageing. 21.8% of people are aged 65 and over (compared to 18.4% in England), with 3% aged 85 and over. Wiltshire was one of only three local authorities in the South West whose 65+ population grew by more than 30% between 2011 and 2021.

The tables below shows how the age distribution in Wiltshire has changed since the turn of the century. Since 2001, the median age has increased from 39 to 44, and the percentage of the population who are aged 65+ has increased from 16.45% to 21.72%.  Over 40,000 more people aged 65+ live in Wiltshire today than did in 2001.

The total population for the 2001 census was recorded at 432,973. The median age was 39 years old. 

The total population for the 2001 census was recorded at 470,981. The median age was 42 years old. 

The total population for the 2001 census was recorded at 513,411. The median age was 44 years old. 

Wiltshire's Joint Strategic Needs Assessment forecasts that the population of those over 85 years old will almost double between now and 2040.

The Census also showed that there are approximately 44,000 unpaid carers in Wiltshire. The proportion of the total population who provide care has dropped since the last Census³; however, the number of people providing significant levels of care increased. 

Estimated dementia prevalence in Wiltshire

There are approximately 8,300 people living with dementia in Wiltshire, although not all these people will have a diagnosis. Based on the prevalence of dementia by age and the recent 2021 Census date, we can accurately predict that around 5,200 women (62.7%) and 3,100 men (37.3%) in Wiltshire have dementia. Approximately 300 people with dementia in Wiltshire are under 65; around 1,900 are aged 90 and over. This reflects the increasing risk of dementia as people get older.

Further information and data about Wiltshire's population can be found in Appendices, under appendix 3.

Links to Business Plans, BSW, other strategies

This strategy aligns with and supports implementation of national and local priorities:

• Equalities Act 2010
• Care Act 2014
• NHS Commitment to Carers 2014
• National Carers Action Plan 2018
• National Institute of Health & Care Excellence (NICE) Dementia: Assessment, Management and Support for People living with dementia and their carers 2018
• NHS Long Term Plan 2019
• People at the Heart of Care: Adult Social Care Reform White Paper 2021
• Health & Social Care Integration White Paper 2022
• DHSC Major Conditions Strategy (expected 2024⁴)
• Wiltshire Council Business Plan 2022-2032
• Wiltshire Joint Health and Wellbeing Strategy
• Wiltshire Independent Living Strategy 2022
• Wiltshire Autism Strategy 2022
• Wiltshire Carers Strategy (to be published in 2023)
• Wiltshire Technology Enabled Care (TEC) Strategy (to be published in 2023)
• Wiltshire Council Prevention Strategy (to be published in 2023)
• Wiltshire Council Climate Strategy⁵
• BSW Learning Disability Mortality Review (LeDeR) programme

Scope of the strategy

This strategy will support all people with dementia and their carers irrespective of age. The strategy focuses on people who live or are registered with a GP in Wiltshire (excluding Swindon).

It recognises that a minority of people receive a diagnosis of dementia whilst in their 40s and 50s, and that this brings challenges (such as employment, caring/parenting responsibilities, financial questions) which require a distinct and personalised response. The strategy also recognises that carers and/or family members of people with dementia (like other conditions and disabilities) may be children or young people. 

Reflecting the Bath & North East Somerset, Swindon and Wiltshire (BSW) Partnership, this is a joint strategy across health, social care and the voluntary and community sector. We recognise the need to work together to develop a seamless response because people with dementia and carers need joined-up support to enable them to live a good quality of life.

¹ A description of the most common types of dementia can be found at Types of dementia (dementiauk.org) (opens new window)

² Brain health and risk reduction (dementiastatistics.org) (opens new window)

³ This may be because the wording of this question in the Census changed between 2011 and 2021

⁴ Major conditions strategy: case for change and our strategic framework (gov.uk) (opens new window)

⁵ Research indicates that air pollution has a harmful impact on brain health and can increase the risk of dementia: Air pollution: cognitive decline and dementia (gov.uk) (opens new window)

Co-production has been central to the development of this Wiltshire Dementia Strategy and the voice of people with dementia and their carers has remained at the heart of everything we do.  It is crucial that we continue to listen to people with dementia and the wider community to understand people's priorities and to educate and raise awareness. 

People with dementia and carers value understanding and help from the people around them.  However, what we have heard from people in Wiltshire often mirrors attitudes nationally, where there is still misunderstanding and fear around dementia.

Research carried out in 2021¹ found:

• public awareness and understanding are increasing. 68% of people correctly believed that dementia is not a natural part of ageing - an increase since 2019.  62% correctly identified dementia as a terminal condition - an increase from 51% in 2019
• but fears around dementia are also increasing. Nearly half of people surveyed said dementia is the health condition they fear most.  Women and older adults are particularly fearful of dementia
• attitudes vary amongst different groups. People in lower socio-economic groups are more likely to see dementia as an inevitable part of getting older.  People who identify as Black or Asian are less likely to agree with the statement 'Dementia is a cause of death' compared with those who identify as White
• people often don't understand what can be done to reduce dementia risk. Despite evidence to the contrary, a third of people think there is nothing they can do to reduce their risk of developing dementia.  Women are less likely to think it's possible to influence their dementia risk than men.  There is particularly low awareness that physical factors like blood pressure and diabetes are linked to dementia risk
• people want to understand more. Three quarters of people would be willing to use technology, such as apps and wearables, to help understand their dementia risk.  The vast majority of people (89%) would be likely to seek an early diagnosis if they spotted the symptoms of dementia in themselves or a loved one
• people are optimistic about the future.  61% of people believe a cure for dementia will be found, and 69% are prepared to be involved in medical research to help find a cure

This research points the way for future local engagement and indicates that one size does not fit all - we should take a variety of approaches in speaking to and hearing from local people.

Appendix 4 summarises the wide variety of discussions, forums and surveys with local people and professionals.  These discussions form the core of this strategy, and we thank everybody involved for their support and contributions.

¹ Public perceptions of dementia - Dementia attitudes monitor (dementiastatistics.org) (opens new window)

The five areas we will prioritise in this strategy are based on the national Well Pathway for Dementia¹.  The actions we have agreed to focus on are drawn from what people with dementia, their carers, and professionals have said is important. 

Each priority has an "I statement" which describes the outcome we are aiming for:

Preventing well

• I was given information about reducing my risk of getting dementia

Diagnosing well

• I know where to go if I think I may have dementia
• I was diagnosed with kindness and compassion, in a timely way
• I am able to make decisions and know what to do to help myself, and who else can help
• I know where to go to understand more about dementia

Supporting well

• I am treated with dignity and respect
• I get treatment and support which are best for my dementia and my life

Living well

• I know that those around me and looking after me are supported
• I feel included as part of society

Dying well

• I am confident my end of life wishes will be respected
• I can expect a good death

Appendix 1 sets out these priorities and actions in more detail. See Appendices.

¹ Dementia wellbeing pathway (england.nhs.uk) (opens new window)

This strategy sets out the vision and outcomes that people with dementia, and their carers, have told us are important to them. We know we have a way to go to make this vision a reality in Wiltshire. Whilst awareness, identification and support for people with dementia has improved in recent years, we must be ambitious and work together to achieve excellence.

We will co-produce a detailed action plan of how we will achieve the aims in this document, by when, and who will be responsible and involved. 

The following are our high-level plans to improve outcomes.

Raise awareness of dementia across the county

• we will raise awareness about what dementia is, how to identify the signs and symptoms, and where to go for help
• we will launch an education campaign about the steps people can take to reduce the risk of getting dementia
• we will ensure that all campaigns are in different formats & languages to ensure accessibility
• we will make sure that information about pathways and services is clear, accessible and understood by public and professionals

Develop a corporate approach to making Wiltshire a dementia-friendly county

• we will ensure that the information we produce is accessible
• we will develop an adult social care commissioning strategy with clear service and training expectations
• we will look to include dementia as part of PHSE within schools and other education settings
• we will deliver our Climate Strategy to reduce air pollution as a risk factor for dementia

Effectively screen for and identify dementia at an early stage

• we will take a proactive approach in promoting screening for all people with an increased risk of dementia
• we will promote NHS annual health checks
• the memory service will work proactively with GP practices with lower diagnosis rates and ensure quality of pre- and post-diagnostic support is consistent
• we will use the latest digital and technological approaches to support the detection of dementia within the Wiltshire population
• screening will be tailored to meet the needs of specific groups or communities - for example, people whose first language is not English, Gypsy, Roma, Traveller and Boater (GRTB) communities (working with Julian House), rural and farming communities, people with learning disability and/or adults at higher risk of early onset dementia

Ensure that the journey for anybody being assessed and diagnosed is consistent

• we will make it easier for people to informally think and talk about dementia. We will ensure all people concerned about their memory, or concerned for others, are able to access the highest quality information and guidance from assured sources and in a range of formats
• we will support people whilst they are waiting for a diagnosis, with Living Well teams within primary care taking the lead. Diagnosis should not be a "gateway" to receiving support
• we will work with GPs to develop pathways in primary care
• we will develop quality standards across primary care and the memory service
• we will ensure everybody who is diagnosed with dementia can access the regular support of a dementia adviser
• increase awareness and use of the "This is Me" document to ensure people's backgrounds, preferences and needs are met 

Reduce waiting times and increase diagnosis rates

• we will invest in diagnostic pathways, reflecting the increased prevalence over the coming years
• we will achieve the waiting times standards for dementia assessment and diagnosis 
• by 2028, two thirds of people with dementia in Wiltshire will be formally diagnosed (as per the national target)
• we will ensure that assessment appointments include discussion of hearing, alcohol consumption, eyesight and falls
• we will ensure that diagnostic tools take account of people's literacy, so that people with reading and/or writing challenges are not misdiagnosed
• we will ensure that adults with learning disabilities, who are at increased risk of developing dementia at an earlier age, can access appropriate diagnostic pathways

Ensure that everybody who is diagnosed with dementia can access NICE-recommended treatments

• this includes the provision of support and breaks for carers, and non-pharmacological support for people with dementia, such as cognitive stimulation therapy (CST) and reminiscence groups
• following diagnosis, regardless of whether they were diagnosed by their GP or through the memory service, every person diagnosed with dementia should be able to access a dementia adviser
• we will ensure that all areas of Wiltshire will receive an equitable dementia adviser offer
• we will develop pathways for people who are diagnosed with dementia earlier in life, recognising that the challenges facing people with a diagnosis in their 40s, 50s and 60s are very different to those in their 80s or 90s
• we will publish our Technology Enabled Care Strategy, which will emphasise proactive and preventative use of technology to support independence, prolong the time a person can stay living at home, prevent the need for long-term care

Review our emergency and out-of-hours support for people with dementia

• we will work with the Police, Ambulance service, health and social care teams and the community sector to ensure the right support is there for anybody in crisis
• we will explore the offer of intensive support for people with dementia (as is currently in place for people with functional mental health conditions), in order to reduce admissions and placements
• we will advise people who to call when there is an emergency
• we will review the offer for people with rarer dementias or more specialist needs, such as Korsakoff syndrome, and crisis beds for people detained under the Mental Health Act

"THINK Delirium"

• delirium sometimes goes unrecognised and yet - unlike dementia - it can be treated and reversed
• we will use the THINK Delirium approach to prevent, identify and treat delirium, especially in hospital and care homes
• we will ensure training is in place to support professionals to identify and treat delirium

Ensure that information and support is easy to find and access

• we will build on the online Wiltshire Dementia Roadmap and ensure that everyone - professionals and public - know what resources are available 
• we will ensure that materials are translated, interpreted and/or adapted to be accessible throughout the diversity of our residents. For example, information must be accessible for adults with learning disabilities
• we will engage with communities in Wiltshire (for example, LGBTQ+, refugee and migrant groups, boater and traveller communities) to understand the different perceptions of dementia and/or services, and respond to these sensitively
• through the Wiltshire Dementia Strategy Group, we will ensure good communication between partners

Invest in our communities and markets

• by investing in prevention and early intervention, we can improve long-term outcomes and make better use of our limited resources
• we will publish market position statements, which will set out clearly the types of provision we will commission to meet different levels of need, as well as the levels of training, skills and experience we would expect staff to have
• we will publish a clear commissioning framework which sets out its expectations of home care, extra care housing, residential and nursing care and other providers, and delivers clarity around the training and skills that care professionals need to have
• we will review our accommodation provision for older people, including extra care and care homes
• we will support individuals and groups to develop micro-enterprises - small, bespoke services which meet local needs in a personalised way
• we will support communities to be dementia friendly. We will also work with our local community groups, elected Members, Town and Parish Councils, local Area Boards, sheltered housing schemes etc to ensure positive messaging about dementia is embedded in our communities
• we work with the voluntary and community sector to create a public presence offering advice and guidance, as well as the provision of information via stands in public places, supermarkets, community events
• we will re-commission our community services to ensure consistent coverage across Wiltshire

Develop a training strategy for carers and professionals

• as part of our Carers Strategy, we will develop a range of regularly delivered training opportunities for unpaid carers, including communication, understanding distressed behaviour, future planning and legal issues
• we will audit training needs for home care, care home, hospital and other professionals and design comprehensive training opportunities
• we will develop a training strategy which clearly sets out what levels of skills and training we require staff at different levels to access
• specifically, we will ensure that dementia advisers receive high-quality, regularly updated training and supervision

Give people with dementia and their carers opportunities to plan for the future

• the NHS and Council will promote advance care planning and Power of Attorney, recognising that people often need time to make these decisions
• we will roll out the ReSPECT system of coding to identify people at the end of life in primary care
• we will ensure care home staff are trained in end of life care and increase the use of RESTORE2 to enable care home staff to identify and escalate earlier signs of deterioration to avoid unnecessary and often unwanted hospital admission
• we will ensure all staff working with people with dementia receive high-quality end of life care training
• primary care will be supported to embed the Gold Standards Framework (GSF) and the NHS Integrated Care Board (ICB) will audit and meet training needs around end of life care
• care homes will be supported to access training and support - for example, via the care home liaison service, Admiral Nurse resource and Tulip Standard training focusing on person-centred palliative care
• through the Wiltshire Carers Strategy, we will support family carers, including people who are going through a bereavement and adapting to the end of a caring role

Appendix 1: our priorities in detail

The five areas we will prioritise in this strategy are based on the national Well Pathway for Dementia¹. The actions we have agreed to focus on are drawn from what people with dementia, their carers and professionals have said is important. This section describes those priorities and the things we will do to achieve the vision set out at the beginning of the strategy.

Appendix 2: the costs of dementia

It is estimated that dementia costs the UK economy £25 billion per year. This is expected to almost double by 2050. This comprises social care and health funding, unpaid care (for example, care provided by family members, partners and other unpaid people) and costs associated with lost productivity (for example costs associated with premature death or absence from work due to dementia)¹².

There is no cure for dementia, and potential for medication to slow the progress of dementia is limited. In 2014, research was undertaken to estimate the impact on cost and wellbeing if there was a treatment that delayed the onset of dementia. It found that if there was a treatment that delayed onset of dementia by five years per person on average, there would be 469,000 fewer people with dementia and 399,000 fewer unpaid carers of people with dementia. This would save around £21.2 billion to the UK economy by 2050. Research also showed that if there was a treatment that slowed progression of dementia, this would generate significant savings because fewer people would be in the severe stages of dementia.

The most recent research about where people with dementia in the UK live is now 7 to 8 years old. Research by the UK Homecare Association in 2015 showed that 60% of people receiving home care had dementia¹⁴ and research published by the Alzheimer's Society in 2014 showed that 69% of care home residents have dementia¹⁵. 

It is estimated that around a quarter of hospital beds are occupied by a person living with dementia. 42% of admissions for people with dementia are avoidable, and for non-elective admissions 36.4% of people with dementia are discharged to a different location from where they lived when they were admitted. This strongly suggests that a significant number of people with dementia move into residential care because of a non-elective hospital stay.

Appendix 3: local demographics and prevalence

Wiltshire is a predominantly rural county situated in the South West of England. It borders the Council areas of Gloucestershire, Swindon, West Berkshire, Hampshire, Dorset, Somerset, Bath & North East Somerset and South Gloucestershire. The county is relatively affluent. However, there are substantial pockets of deprivation.

Wiltshire's population is mainly served by three acute hospitals: Salisbury District Hospital, Royal United Hospitals in Bath and Great Western Hospital in Swindon.

On 1 July 2022 an Integrated Care System (ICS) was created to cover Bath & North East Somerset (B&NES), Swindon and Wiltshire (BSW) CCG. The ICS brings together the BSW CCG, three hospital trusts, private providers, community service providers, a mental health trust, an ambulance trust and voluntary sector organisations. To ensure that the health and care services we commission meet the needs of the many different communities living across BSW, there are three place based Integrated Care Alliances (ICAs) of which Wiltshire will be one. 

New Census data released in 2022 shows that 510,400 people live in Wiltshire. This makes Wiltshire the ninth-largest local authority in England by population size, but the eleventh lowest by population density. Wiltshire's population has increased by 8.4% since the last Census - a higher rate of increase than the overall rate of increase in England (6.6%). 

In line with the national picture, Wiltshire's population is getting older. The 65+ population increased by 56% and the 85+ population by 68% between the 2001 and 2021 Censuses. The number of people aged 85 and over is expected to increase by a further 87% between 2021 and 2040. Globally, between 25 and 30% of men and women aged 85+ will have dementia^16.

As the population ages, the number of people living with dementia will inevitably grow (although international research indicates that the incidence of dementia - that is, the proportion of people who will get dementia - has fallen in Europe and North America in recent decades, which is likely to be driven by changes in lifestyle¹⁷.

Using prevalence data, we can estimate the numbers of people in Wiltshire with specific dementias and/or co-existing long-term conditions:

There is increasing research and understanding about the prevalence of dementia amongst adults with learning disabilities (LD). 22% of older adults with LD are likely to have dementia (although not all will have been diagnosed). People with Down's syndrome are more likely to develop dementia, and the age of onset is on average 30-40 years younger, for example, potentially when the person is in their 30s or 40s¹⁸. It is recommended that an assessment for someone with Down's syndrome should be done by a multidisciplinary team (GP, psychiatrist, community learning disability nurse, occupational therapist and clinical psychologist), with the learning disability service working alongside the memory service for advice on diagnosis or management. This strategy also makes recommendations about how a diagnosis of dementia should be communicated to a person with a learning disability and their family.

In June 2023, Wiltshire's dementia diagnosis rate was 60.3%¹⁹. This is 3.2% below the national average and 1.9% above the regional average:

A University College London study, published in 2021, showed that during the pandemic fewer diagnoses were carried out nationally compared to previous years. GP assessments between June 2020 and May 2021 were down 38% compared to the previous 12 months, and memory service assessments were down 50%²⁰.

The rurality of Wiltshire may be a factor. Research²¹ shows that the prevalence of dementia is often higher in rural areas, due to higher proportions of older people and incidence of loneliness. In general, the use of healthcare services tends to negatively correlate with the time it takes to travel to them²², and this is likely to be particularly the case for older people. National data suggests that dementia diagnosis rates in urban areas are higher than in rural areas. In Wiltshire, we have increased access to assessments in GP practices, as well as through memory assessment services, and will continue to recognise challenges for rural communities when designing dementia services.

Wiltshire is home to gypsy and traveller, as well as boating, communities. Compared to the general population, gypsy and traveller communities often experience poorer health outcomes and have worse access to health outcomes. Research indicates there is not always good understanding of dementia amongst these communities and this strategy commits to a proactive approach to engaging with and raising awareness amongst these groups.

Appendix 4: summary of co-production (Spring/Summer 2023)

The Wiltshire Dementia Strategy is driven by the voices of people with dementia and carers, as well as the views of the wider public and professionals. Over 400 people, including more than 150 people with dementia and/or unpaid carers, took part in the development of the strategy and told us what was important to them. This appendix summarises what people told us.

We would like to thank everybody who has so generously taken the time to contribute and share their views. Throughout the life of this strategy, we will continue to update stakeholders on how we are implementing the service, and to check in with people with dementia, carers, the wider community and professionals to hear how we are doing in delivering our priorities.

Between March and July 2023, we held co-production and engagement activities, including workshops, focus groups, meetings (group and 1:1) and online surveys. We heard the following themes clearly and consistently:

• Support for carers - carers described their caring role in a variety of ways: exhausting, frustrating, yet also greatly fulfilling. We will support carers by identifying and meeting their needs early, enabling a life outside caring, promoting good mental and physical health, supporting carers to access education and work, providing training to support carers as experts in their caring role and providing support to help carers manage the end of their caring role
• Prevention - there are real opportunities for prevention and reducing some of the risk factors associated with dementia. We will support people to act through raising awareness and promoting healthy lifestyles
• Diagnosis - people have variable experiences of getting a diagnosis. We will make sure that a diagnosis is helpful, sensitively managed, and leads to good information and support which continues through the person's journey with dementia
• Information and support - when people find the right support, they often find it invaluable. But too often, people find it difficult to navigate services. We will promote services through clear information and develop pathways which are joined-up and put the person at the centre
• Personalisation - people emphasised the importance of kindness and consistency, and of celebrating each person's individuality and strengths. We will ensure that services are provided by well-trained staff with the right values. We will support local communities to be dementia-friendly
• Stigma - whilst awareness has increased in recent years, dementia is sometimes stigmatised. This can make it difficult to talk about, leading to isolation and loneliness. Some people also said they wanted support to plan for the future, including end of life. We will make Wiltshire a place where we can talk about dementia, and about dying, in an open and sensitive way 

Introduction

As Wiltshire Council and BSW Integrated Care Board develop a Dementia Strategy for the next five years, it is crucial that people with dementia and carers are at the heart of what we do. We know that Wiltshire's older population will continue to grow in the next 20 years, and this means the number of people living with dementia (and especially living with advanced dementia) will grow significantly.

Everybody experiences dementia differently, whether they have a diagnosis themselves or care for somebody with a diagnosis. One size does not fit all, and the feedback we have heard points to the need for personalised support which promotes people's strengths and individuality.

This engagement was an opportunity to hear from people with dementia and carers, as well as the wider public and professionals, about what works well and what we can do better. We will continue to work closely with people with dementia, their families, partners and carers, the wider public, professionals and other stakeholders as we implement the strategy.

Method

To ensure the Wiltshire Dementia Strategy represents the views of stakeholders, we used a variety of methods to capture people's views, including focus groups and surveys. In total, just under 300 people attended meetings and discussions, including over 50 people with dementia and carers, with over 100 additional carers providing their views via online surveys.

We also engaged with the Community Conversations team, to ensure that the strategy reflects the extensive engagement work happening in Bemerton Heath and Studley Green.

Face-to-face discussions were open and relatively unstructured, to allow stakeholders to provide their views in a way and at a pace which suited them. In general, discussions focused around the five stages of the Well Pathway for Dementia:

• Preventing well
• Diagnosing well
• Supporting Well
• Living Well
• Dying Well

Support for carers runs through all stages of the pathway. Many people described their caring role as a combination of fulfilling, frustrating and exhausting. One person said, "So, what's it like day to day? I just never know." People spoke about the difficulties of juggling work with their caring role, financial challenges (especially people who are not eligible for Carers Allowance), the impact on physical and mental health, and the long-term impact of lockdown. 

One person who had cared for a parent with dementia said, "I do feel incredibly fortunate to have been able to undertake the role especially in these times where it gets less and less financially and practically possible for working-age children to even consider ceasing work in order to care for a parent." Another, who is still caring for their parent, said: "Two years in I'm exhausted both mentally and physically and my mental health is precarious. Sadly, that is the situation for so many people."

People consistently said that the expertise of families and carers must be listened to and respected. People said: "I am an expert in my husband's care; I know what's best"; "No-one listens and I know what she needs".

In addition, Carers Support Wiltshire carried out an online survey (completed by 186 carers) and held three focus groups held in Corsham, Trowbridge and Salisbury. This generated a wealth of invaluable feedback and intelligence which we have used in developing the strategy. We would like to thank Carers Support Wiltshire and all of the carers who participated for their contributions. The methodology and findings of the survey are all available within this strategy. 

Findings

These findings are a summary of the comments and suggestions that were made through the various engagement activities carried out during March-July 2023.

Preventing well

• People talked about how the stigma of dementia has decreased over the years: "it's not quite the end of the world now, with the right support". Create an environment where living with dementia is not a stigma
• Need to help communities to be more aware of dementia; more training for the community as family are not recognising early signs
• Prevention also means helping people to maintain cognitive functioning as much as possible after they have been diagnosed. People highlighted the need for NICE-recommended support such as cognitive stimulation therapy (CST), group reminiscence and technology-enabled care (TEC)

Diagnosing well

• People had mixed experiences of diagnosis. Some people reported having to fight to get a diagnosis; other people had a positive experience of getting a timely diagnosis and, as a result, useful information and support
• One person described the memory service as a "lucky charm ... The Avon & Wiltshire Partnership (AWP) Memory Service who made the diagnosis, worked hard to get medication dosages right and reviewed [my mother] annually"
• Other people described a much more challenging situation: "Getting a firm diagnosis was very frustrating. Over the course of a year we were passed around to 5 hospitals/ specialists. They all agreed that something was wrong but kept being told 'it's not in our remit' and passed us on. During this time my husband was deteriorating."
• Some people find it difficult to navigate the prescriptions process and do not feel supported by the memory service
• There was a consistent view that the diagnosis pathway can be confusing for the person with a possible dementia and their family or carers: "Being diagnosed felt like entering a labyrinth". Some people feel they have to fight to get an assessment: "it was very difficult to get a diagnosis in the first place - we had to be very pushy"
• Some people found the information they were given throughout the diagnosis pathway useful; however, one person suggested that this information is re-visited later in the journey
• However, some people described under-diagnosis or misdiagnosis of delirium and/or mild cognitive impairment

Supporting well

• information is patchy which means people rely on word of mouth: "sometimes you have to kick the door in somewhere to open more doors". One person said: "It was extremely difficult to get information and it was through word of mouth that we eventually found some support especially the reconnecting group in Calne."A central information hub across Wiltshire is needed"
• because of this, people depend on Champions and other people who have knowledge of the system. Also: "when people become carers they rely on the carers groups and it ends up being their support group and friends"
• people found it difficult to find or access services which could help them - although when people manage to find the right service, it is often invaluable. People described long waiting lists, local groups which closed during COVID and didn't re-open, patchy information, and a "postcode lottery" of local services. "There are things happening in the community, but do we necessarily know about them?"
• the importance of assessing people with dementia in their familiar environment was highlighted
• what is sometimes described as "wandering" or "challenging" is often as expression of the person's personality, history or how they are feeling - this must be recognised
• it is important that professionals and the wider community recognise the distinct challenges that often accompany dementia: "It's important that people make reasonable adjustments and allowances to prevent people from being scared."
• services are often disjointed. This means it is sometimes carers who are left to join the dots. One man realised his wife wasn't taking her medication, but GP and pharmacy hadn't advised that she wasn't picking up prescriptions. "It's a minefield with lots of different organisations, professional and acronyms"; "Where do I go? Health? Or social care?"
• the lack of communication between commissioners, providers and health and social care practitioners sometimes means people don't get the care they need. We heard that people with dementia living at home or in care homes sometimes didn't get personalised care, but we heard different perspectives on this depending on whether we spoke to social care practitioners, commissioners or provider staff. Much greater communication and clarity is needed to put the person with dementia and their carer at the centre
• people described support from their GP and primary care as variable. People who had been offered an annual health check had found it useful, but this was not consistent. Some GPs don't give support and advice following diagnosis, and there is sometimes a lack of follow-up care and ongoing medication management
• one person said: "'At [name of GP surgery] it's really difficult to get a GP appointment. I don't feel they listen. I phoned for my husband's appointment in mid-May and the first appointment I can have is July the 5th. I can't get through on the telephone and they can't talk to us in person." Making primary care more consistent must be a priority of this strategy
• likewise, people had mixed views about the support they receive, or have tried to access, from Wiltshire Council. One person said: "You have to fight for everything and often making daily phone calls hoping to get through to someone who knows the correct information and services."
• support and activities which occupy and are meaningful to the person are important
• good local services support both the person with dementia and their carer. One person described their local, independent Tisbury Memory Group as follows: "M and I were warmly welcomed here and made to feel appreciated as part of the group - this was novel and made a huge difference to both of us."
• there are gaps for a number of groups:
  • working-age people with dementia, especially people who are physically fit but have complex mental health needs
  • people with rarer dementias, Korsakoff's Syndrome etc, were also highlighted
  • people with sensory loss, where standard screening and diagnostic tools may not be sensitive
  • people with learning disabilities; research shows that dementia is under-recognised and under-diagnosed in adults with Down's syndrome
  • people with dementia who are under secondary mental health care. Because of their complex needs, they may be at higher risk of being placed in hospital or residential/nursing care outside of Wiltshire; we need to develop better crisis and bedded provision in-County for these people

Living well

• a culture of inclusion was supported by most people. We need to celebrate and support the individuality, strengths and potential of each person
• training for professionals in essential. Some people we heard from had experienced inconsistency from professionals, with some staff members lacking core dementia skills. One person said: "[I don't always see] the same doctors and healthcare assistants, [I'm] always telling my story". The importance of consistency and continuity in staff provision was emphasised again and again
• some people with dementia and carers feel like they are on their own: "we felt abandoned"; "I didn't know which way to turn after the diagnosis". Some people felt unsupported by social care, their GP and the memory service: "After diagnosis you are dropped ... There is no other long term illness where you are dropped"
• however, others feel supported by their local communities and charities. Support from Alzheimers Support is "incredibly helpful"; "very valuable guidance from Medequip"; "I really recommend Carer Support Wiltshire"; "AGE UK supported me to fill out forms"; Alzheimer's training sessions are "endlessly useful". "Alzheimer's Support gives a lot of person-centred care when giving the carer a break"; "Most of the voluntary sector know about people when they are in crisis"; "Nothing but praise for day centres run by Alzheimer's Support (lucky enough to get a space). Need the same things in each area of Wiltshire not just Trowbridge, Chippenham, Salisbury". Others praised the Alzheimer's Society, "with its top-notch literature"
• one person highlighted "knowing you're not on your own" as the most important thing. Many people felt it would be good to have carer-friendly and dementia-friendly towns (Bradford-on-Avon is already a good example). People mentioned Parish Councils, men's sheds, churches, community hubs as other ways to engage
• the importance of language was also highlighted: "men respond better to being invited to a 'workshop' than to a 'support group'"
• the importance of the built environment was also highlighted: "Environments could improve when professionals are asking questions determining the persons capacity (makes sure there's a clock, an advocate, no acronyms, medical terms) or home environment". The Brain Dome, described as "a voyage inside the brain to explore basic neuro-science and promote discussion around keeping our brains healthy," featured at Calne's Big Dementia Day in 2023
• we need to be explicit about how dementia might affect LGBTQ+ people differently. It was suggested that proactive statements about inclusivity in public spaces would help acceptance
• people need support managing and understanding finances: "I didn't know that if I was receiving certain benefits, I could claim expenses for travelling [to the memory service]"
• some people had seen the significant transformation that music has on a person with dementia

Dying well

• amongst professionals and non-professionals we spoke to during the engagement for this strategy, this theme evoked especially personal responses. Some people found death and dying difficult to talk about, but often felt relief afterwards. Some people suggested we should treat planning for death and dying as a core part of health promotion: "we need to enable these conversations.Wiltshire could be a place where these conversations can happen."
• there is scope for public bodies to promote Power of Attorney, advance care planning, funeral planning, etc. We need to give individuals and families the opportunity to have these conversations at every step of the pathway, from pre-diagnosis to end of life
• people spoke of the "cliff-edge" when the person with dementia dies. "People don't know where to go when the caring stops"
• "We want to support people to have a good death" - this means supporting the person to die in the place and manner they choose. We need to have a menu of choices for people
• "How can we give staff the confidence that they can support people at the end of life?" Employers need to offer specialism in end of life care as a career pathway
• people also discussed the implications of technology and social media at the end of life

¹ Dementia wellbeing pathway (england.nhs.uk) (opens new window)

² Dementia prevention, intervention, and care: 2020 report of the Lancet Commission (thelancet.com) (opens new window)

³ Whilst brain imaging should be accessible to all and is necessary for most dementia assessments, it is not necessary for everybody and can be distressing for some people. AWP is in the process of developing best practice guidelines which will adopt NICE guidance and other research / evidence base

⁴ Care provided by same-sex workers has also been raised as a cultural requirement for some people

⁵ Types of dementia (dementiauk.org) (opens new window)

⁶ Dementia friends (dementiafriends.org.uk) (opens new window)

⁷ Young Dementia Network (youngdementianetwork.org) (opens new window)

⁸ Deaths due to dementia (dementiastatistics.org) (opens new window)

⁹ Dementia and all-cause mortality and deaths involving coronavirus (COVID-19), England: 24 January 2020 to 31 December 2022 (ons.gov.uk) (opens new window)

¹⁰ What on earth is a death café? (theguardian.com) (opens new window)

¹¹ Recommended Summary Plan for Emergency Care and Treatment

¹² Luengo-Fernandez, R. & Landeiro, F. (in preparation). The Economic Burden of Dementia in the UK

¹³ The economic impact of dementia (dementiastatistics.org) (opens new window)

¹⁴ Carter, D (2015) Dementia and Homecare: Driving Quality and Innovation by the UK Homecare Association

¹⁵ Prince, M et al. (2014) Dementia UK: Update Second Edition report produced by King's College London and the London School of Economics for the Alzheimer's Society

¹⁶ Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019 (thelancet.com) (opens new window)

¹⁷ Alzheimer's Research UK: Dementia rates falling by 13% per decade over last 30 years (opens new window)

¹⁸ Mental Health Foundation: People with learning disabilities: statistics (mentalhealth.org.uk) (opens new window)

¹⁹ The dementia diagnosis rate is calculated by comparing recorded diagnoses to estimated dementia prevalence in the 65+ population

²⁰ Dementia diagnosis rates drop during pandemic | Alzheimer's Society (alzheimers.org.uk) (opens new window)

²¹ Regional variations - increasing access to diagnosis (alzheimers.org.uk) (PDF) (4MB) (opens new window)

²² Palmer, B. et al. (2019). Rural health care A rapid review of the impact of rurality on the costs of delivering health care. London