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Wiltshire Dementia Strategy 2023 to 2028

Appendices

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.

Cost of dementia to the UK economy
Economic areaCost in £ billion
Social care12.5
Healthcare1.7
Informal care10.2
Productivity costs0.6

 

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 dementia16.

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:

Type of diagnosis (specific dementia)
 Estimated prevalenceNumber of people with dementia in Wiltshire  
Alzheimer's disease60%4,980  
Vascular dementia17%1,411  
Dementia with Lewy bodies10 to 15%830 to 1,245  
Fronto-temporal dementia5%415  
Mixed dementia10%830  

 

Number of co-morbidities
 Estimated prevalenceNumber of people with dementia in Wiltshire  
1 or more77%6,391  
2 or more45.2%3,752  
3 or more21.6%1,793  
4 or more8.1%672  
5 or more2.3%191  

 

Specific co-morbidities (co-existing long-term conditions)
 Estimated prevalenceNumber of people with dementia in Wiltshire  
Hypertension44%3,652  
Diabetes20%1,660  
Stroke/TIA18%1,494  
Coronary heart disease18%1,494  
Depression17%1,411  
Parkinsonism11%913  
Epilepsy5%415  
Serious mental illness4%332  

 

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:

Regional averages for dementia diagnosis
ICS / areaEstimated diagnosis
England63.5%
South West58.4%
NHS BANES, Swindon and Wiltshire57.7%
Bath & North East Somerset (BANES)57.6%
Swindon49.8%
Wiltshire60.3%

 

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 about 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 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

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)

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

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 cafe? (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 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

 

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