Living Well with Dementia

Living Well With Dementia On The Isle of Wight

2014 – 2019

1 Contents

2 Foreword

Dementia is becoming the UK’s largest health and social care challenge. It is likely, at some point in our lifetime, it will impact us directly or due to a family member or close friend. It is the aspiration of the My Life A Full Life Programme for the Island to become dementia friendly, allowing people to live well with dementia on the Isle of Wight.

This is the Isle of Wight’s second Dementia Strategy; the first was published in 2009 and focused on improving the number of people being diagnosed with dementia and the post diagnostic support they received afterwards. It began the process of the transformation of care across all the sectors in anticipation of the growing number of people with dementia.

Nationally, there is a call to action by the Prime Minister to improve dementia care, and for improvements to take place at a far greater pace. There is an increasing emphasis on enabling families and communities to look after themselves – supporting carers to care, and helping our local communities become more dementia friendly. We need to ensure that the money currently spent in dementia care is being invested in the most effective ways, traditionally spent on residential or hospital care, with little investment left for support earlier on in the 'dementia journey'.

The engagement for this strategy has highlighted some of the excellent work carried out on the Island that is improving people’s quality of life. However we still have some way to go. There are just under 3000 people estimated to live with dementia on the Island and due to our elderly population and increasing life expectancy the number of people living with dementia is estimated to increase to 3651 by 2024. This means that ensuring people are supported to live well with dementia on the Island is one of our top priorities.

Addressing loneliness and isolation is a priority for the My Life A Full Life Programme and the State of the Nation report12 highlights this in particular for people living with Dementia. We would like people and their carers to have the confidence and support from their communities to carry out meaningful activities, to have aspirations and a good quality of life. We are delighted that this year saw the launch of Ryde as our first dementia friendly town and look forward to expanding this to other communities on the Island.

We have achieved 60 percent of the estimated dementia population to be diagnosed. Diagnosis is a gateway to making informed personal choices, providing access to a full range of post diagnostic support and services, ensuring people live well with dementia and delaying the time for more intensive packages of care. By March 2015 we aim to reach over 67% of the dementia population to have a diagnosis and access to post diagnostic support.

There have been some excellent examples of partnership working with the formation of the Dementia Alliance that has been delivering the Dementia Challenge Fund programme and the NHS Trust and care homes on the Island delivering the Dementia Friendly Environment programme which are both contributing to improving the quality of lives of people living with dementia on the Island.

It is important that CCGs, Local Authorities, local partner organisations and communities continue to work in partnership to break down the stigma, promote timely diagnosis and post diagnostic support services. This will help people and their carers feel supported by their communities to live well with

3 dementia. The commitment of the Island’s organisations has been reflected in the contribution to this strategy and from the partners translating this strategy into actions. We would like to thank the many contributors to this strategy and in particular those who have shared their personal experiences to help improve services and outcomes for others.

Dr John Rivers, IoW CCG Executive Chair & Clinical Lead

Cllr Steve Stubbings, Isle of Wight Council

4 Executive Summary - The Scale of the Challenge

The Vision

The Isle of Wight is to be a place where communities encourage people with dementia and their carers to seek help and feel supported to go about their daily lives safely and free from stigma. Where people are empowered to have high aspirations and have the confidence to participate in meaningful activities. A place where people and their carers receive high quality compassionate care, whether at home, in hospital, or in a care home.

About dementia

Dementia is an umbrella term describing a serious deterioration in mental functions, such as memory, language, orientation and judgement which impacts upon the person’s ability to carry out everyday tasks. There are many types of dementia with Alzheimer's disease being the most common one accounting for approximately 62 percent, 17 percent are estimated to have vascular dementia and many have a mixture of the two. Most forms of Dementia, apart from vascular dementia, are progressive and so the symptoms gradually get worse and the condition is currently incurable. Medicines and other interventions can lessen symptoms and people may live with dementia for 7-12 years in which their health and social care needs change throughout this period.

Age is the most significant known risk factor for dementia. After the age of 65, the risk of developing Alzheimer's disease doubles approximately every five years. With 1 in 14 people over 65 and 1 in 6 over 80 having some form of dementia.

The impact of dementia

The Department of Health ‘State of the nation’ report on dementia care and support in England (DOH, 2013) Highlighted some key facts regarding the impact dementia has:

Mortality - Of the top 25 causes of years of life lost in the UK due to premature mortality between 1990 to 2010, a study found Alzheimer’s disease and other dementias had risen from 24th place to 10th, accounting for 2.6 percent of total years of life lost across the top 25 causes.

Diagnosis – Currently 60 percent of the estimated number of people to be living with Dementia on the Island have a diagnosis and access to post diagnostic support, higher than the national average of 50 percent.

Hospital care - 70% of acute hospital beds are currently occupied by people over the age of 65 and half of these may have a cognitive impairment including dementia 11. Hospitals are particularly challenging environments for people with dementia and they experience worse outcomes in terms of length of stay, mortality and institutionalisation compared with those without dementia for comparable illnesses1, this is estimated to cost £6 million per year.

Care homes and care at home - An estimated one third of people with dementia live in residential care with two thirds living at home. Based on the Islands estimated prevalence of

5 dementia, 724 people live with dementia in a care home on the Island. If our proportion of people living in care homes remains the same, by 2024 this will have increased to 894

Economy - Dementia costs the UK society an estimated £23 billion a year, more than the costs of cancer, heart disease or stroke.

Carers - An estimated 21 million people in our country know a close friend or family member with dementia – that is 42 percent of the population. There are around 550,000 carers of people with dementia in the England. It is estimated that one in three people will care for a person with dementia in their lifetime.

Fear - People fear dementia more than any other disease. 39 percent of over 55s fear getting Alzheimer’s the most, compared to 25 percent who worry most about cancer.

The prevalence of dementia

The Island has the highest recorded prevalence of dementia in the UK for 2011/12 mainly due to the higher than average elderly population. In January 2014, 1768 people on the Island were diagnosed to be living with dementia, there were estimated to be an additional 1186 people living with dementia that do not have a diagnosis and therefore without access to post diagnostic support services.

Due to our ageing population the prevalence of dementia is predicted to continue to continue to increase by 23 percent by 2024 which equates to an additional 697 people on the Island living with dementia.

Achievements

The Isle of Wight has developed a Memory Service Nationally Accredited Programme MSNAP, an integrated care pathway that includes, NHS Trust, Local Authority and third sector organisations, there has been training to improve diagnosis rates and reduce anti-psychotic prescribing for dementia, the formation of the Dementia Alliance, Dementia Friendly Communities and Dementia Friendly Environment work are to name a few of the projects that are improving peoples quality of life. This work has been recognised nationally and used as an example of best practice.

Priority areas for action

This is an Island wide strategy involving all stakeholder organisations on how we will continue to drive for improvements over the next 5 years enabling people to live well with dementia on the Isle of Wight.

This strategy refresh has been an opportunity to engage with the Island residents and organisations to understand what is working well and where the challenges remain. This involved a consultation with 106 people attending the engagement event on 15th October 2013, a number of focus groups and interviews with stakeholders. The following priority areas for action were highlighted from the consultation:

1. Dementia friendly communities that contribute to greater awareness of dementia and reduce stigma

6 2. Timely accurate diagnosis of dementia

3. Better post diagnostic support for people with dementia and their families

4. People with dementia, their families and carers being involved in the care planning of their illness throughout the journey

5. More people with dementia living a good quality of life at home for longer

6. People with dementia in hospitals or other care settings to have improved quality of care and be treated with dignity and respect

The Dementia Steering Group and Island organisations have explored these six priority areas and developed associated action plans. It has been recommended that:

1. The six priority areas for action are ratified and action plans are agreed with the relevant lead organisations. 2. The organisations will report to the Dementia Steering Group on the implementation and delivery of the action plans. 3. The Dementia Steering Group report on the progress of the implementation through six monthly reports.

7 1 Introduction

Dementia is predicted to become the biggest health and social care challenge of this generation. In the UK there are over 670,000 people living with dementia. With an ageing population the number is predicted to continue to increase by 17% by 2020.

Dementia is a huge cost to the local health economy and to the hearts of local communities. It is estimated to cost the UK economy £23 billion a year, more than cancer and heart disease combined. Figure 1 illustrates the split in the costs for dementia.

Figure 1: Distribution of Dementia Service Costs

The impact of dementia on the individual and their families is profound, family carers are often frail older people themselves with high levels of depression, physical illness and a diminished quality of life.

Dementia is an umbrella term describing a progressive decline in mental functions, such as memory, language, orientation and judgement. This can impact the ability to carry out daily activities. The symptoms gradually get worse over time and the condition is currently incurable, interventions can lessen the symptoms and people can live with it for 7 – 12 years after diagnosis.

Approximately 62 percent of people with dementia have Alzheimer’s disease and 17 percent have vascular dementia, many others have a mixture of the two or some less common forms 2 as illustrated in Figure 2.

Age is the most significant known risk factor for dementia. After the age of 65, the risk of developing Alzheimer's disease doubles approximately every five years. With 1 in 14 people over 65 and 1 in 6 over 80 having some form of dementia.

Figure 2: breakdown of the different types of Dementia.

There is no particular measure to prevent dementia at this point in time. There is evidence that healthy living behaviours such as better diet and physical activity can reduce the risk to a person of developing dementia or delay its onset. In December 2013 at the G8 Dementia Summit, leading nations committed to developing a cure or treatment for dementia by 2025. To meet this challenge, the UK government aims to increase its annual research funding to £132million by 2025.

On the Isle of Wight we have the highest percentage of the population living with dementia compared to the rest of the UK, mainly due to our higher than average elderly population. It is

8 estimated that in 2013 there were 2954 people living with dementia, this is predicted to increase by 23 percent to 3651 by 2024. This increase in dementia prevalence is due to people living longer as a consequence of better healthcare and improved standards of living. This presents a number of challenges, directly for those people who develop dementia and their families and carers, and indirectly for the statutory and voluntary sector services that provide care and support.

Ensuring people live well with dementia on the Isle of Wight is a priority for everyone and reflected by the number of organisations involved in developing this Island wide strategy. This strategy has a two year action plan that will be reviewed by the Dementia Steering Group, which includes representatives from stakeholder organisations on the Island including; Isle of Wight Clinical Commissioning Group, Isle of Wight NHS Trust, Public Health, Local Authority, Police, Ambulance, voluntary organisations, private sector organisations, carers and service users.

The Dementia Steering Group is responsible for reporting the development and delivery of the action plan.

This strategy has three aims:

 Improve awareness and prevention

 Ensure people receive a timely diagnosis and appropriate post diagnostic treatment and support

 Create dementia friendly communities

2 Policy Context

2.1 Outcomes frameworks Outcome frameworks are national documents published by the Department of Health that provide a vision for what we want to achieve and a mechanism for measuring outcomes linked to that vision.

There are three outcome frameworks that have been referred to for this Island wide strategy:

 NHS Outcomes Framework

 Public Health Outcomes Framework

 Adult Social Care Outcomes Framework

The Department of Health has commissioned a research team to investigate the potential for a routine Person-Reported Outcome Measure for dementia to be included in Domain 2 - Enhancing quality of life for people with long-term conditions in the NHS Outcomes framework 2015/16. This will measure the effectiveness of post-diagnosis care in sustaining independence and improving quality of life for people with dementia.

9 2.2 National & Local Policies There are a number of national and local policies that inform this strategy including those from, Prime Ministers Challenge on Dementia, (2012), State of the nation report on dementia care and support in England, (DOH, 2013), NHS Outcomes Framework (DOH, 2013), National End of Life Care Strategy (DOH 2008), Caring for our future; Reforming Care and Support (DOH, 2012), Carers Strategy (DOH, 2011), and the Isle of Wight Carers Strategy (IWC, 2013). With particular focus on the Living Well With Dementia: A National Strategy (DOH, 2009) which aims is to ensure significant improvements are made to dementia services across three key areas:

 Improved awareness & prevention

 Early diagnosis and intervention

 Higher Quality of care

It aims to achieve this by identifying 17 key objectives. Further details about these reports can be found in Appendix One.

3 Dementia on the Isle of Wight

3.1 Local Context The Island had the highest recorded prevalence of dementia in the UK during 2011/12. In January 2014, 1768 people on the Island were diagnosed to be living with dementia, there was estimated to be an additional 1186 people living with dementia without a diagnosis and therefore do not have access to post diagnostic support services.

Table 1 illustrates the increase in diagnosis rates since 2007 and the predicted increase in the number of people living with dementia over the next 10 years.

Table 1: The number of people on Isle the Wight with a dementia diagnosis and the estimated population of people living with dementia.

There is predicted to be a 23 percent increase in the number of people living with dementia by 2024 which equates to an additional 697 people on the Island with dementia. Table 2 illustrates the largest prevalence increase is in the 70-74 years old age group with a rise of 33% from 2013 to 2020 followed by the 90+ age group with a rise of 32%.

10 Table 2: Isle of Wight: Estimated Prevalence of Dementia: Number of People Age 65+ - Persons by Age and Year

The increase by gender from 2012 – 2020 is predicted to be larger in males with a 32% increase compared to females with a 16% increase as illustrated in Table 3.

Table 3: Isle of Wight: Estimated Prevalence of Dementia: Number of People Age 65+ - by Gender

Memory Clinics

The memory service on the Island had 921 people on its case load in February 2014 and receives on average 88 referrals per month.

Comorbidities

Nationally 59 percent of people with dementia have two or more concurrent illnesses or diseases, and 40 percent of people admitted to hospital have dementia.

Care Homes

There are 64 homes for older people on the Isle of Wight, 53 residential homes, 11 nursing homes. In 2011 there was 1,798 people aged 65 and over resident in a care home. In March 2014 there were 377 residents with a primary need of dementia supported by the local authority to live in care homes.

Of the estimated prevalence of people that have dementia on the Island, using the CAPITA Dementia Toolkit, it is estimated that 724 people live with dementia in care homes. In Table 5 this is broken down into the severity of mild, moderate and severe needs of care. Over the next 10 years this is predicted to increase by 23 percent.

Total Dementia Number of people with Mild Moderate Severe population in a Dementia care home 2014 Diagnosed 1772 55 133 234 434 Estimated 2954 92 222 390 724 Prevalence 2024

11 Estimated to 2811 87 211 371 689 be Diagnosed Estimated 3651 113 274 482 894 Prevalence

Table 5: The number of people estimated to live in care homes on the Isle of Wight

3.2 Population Sub Groups Certain populations of people with dementia will have needs that are different from the general population. Some groups also have a higher risk of developing dementia.

Young People with Dementia

Projections for early onset dementia suggest that between 40 and 50 people aged 30 to 64 will have dementia in any one year on the Isle of Wight.

The needs of younger people with dementia may be different due to their financial commitments and dependent children or family. The post diagnostic support services and accommodation are focused towards older people; therefore activities and interests often do not meet their needs.

People with Learning Disabilities

People with learning disabilities have an increased risk of developing dementia compared to other groups. Nationally, 50% of people with Down’s Syndrome aged 60-69 and 22% of those over 60 with other learning disabilities are recognised to be at risk of dementia3.

People from black and minority ethnic groups.

People from all ethnic groups are affected by dementia. Early onset dementia is more common among black and minority ethnic populations, accounting for 6.1 percent of dementias in this group, compared with only 2.2 per cent for the UK population as a whole. People from minority ethnic backgrounds may require specifically tailored approaches to treatment and care e.g. due to language or cultural differences.4

People with alcohol related dementia

It is estimated that up to 10 percent of dementias are related to alcohol. Services to support people with alcohol-related dementia frequently fall between standard dementia services and alcohol services11. Younger people with behavioural problems due to alcohol related dementia are usually placed off-Island in specialist placements.

12 3.3Local Symptoms and data

Achievements The Isle of Wight dementia services Joint Commissioning Strategy 2009 - 2013 was published in March 2010 to drive improvements in dementia care locally. The action plan for the implementation of this dementia strategy has resulted in the delivery of a number of successful projects that have improved the level of care and support people receive on the Island. Some of these programmes are:

Accredited Memory Service

The Memory Service was set up in 2009 and is 1 of 77 of the memory services national accredited programmes (MSNAP) in the UK. The services receive just under 100 referrals per month from GP’s and the Dementia Liaison Team in St Marys Hospital.

Dementia pathway

A New Integrated Care Pathway for people newly diagnosed with dementia has been agreed and consulted upon. This ensures newly diagnosed people have access to intensive Cognitive Stimulation Therapy (CST) for 8 weeks and thereafter, maintenance CST. This pathway is illustrated in Figure 3.

Increase in diagnosis rate

The number of people estimated to be living with dementia who have a diagnosis is 60 percent on the Isle of Wight. A number of initiatives have been introduced to increase the awareness and value of diagnosis of dementia. Amongst these is a GP training programme to support Primary Care in identifying people to be referred to the memory service for assessment. This rate has consistently increased over the last three years as demonstrated in Table 1.

Reduction in antipsychotic prescribing

The Prime Ministers Challenge for dementia laid out a two thirds reduction in the use of antipsychotic prescribing. On the Island this been reduced from 17 percent in 2006 to 3 percent of people with dementia being prescribed antipsychotics as illustrated in Table 6.

Table 6: Percentage of patients with a Dementia Diagnosis on Antipsychotic Medication.

Dementia friendly Hospital:

13 The Acute Matron Dementia Champion and Dementia Liaison Team have developed and delivered a number of initiatives to make St Marys Hospital a dementia friendly hospital. Some of which include:

The Environment:

 Way finding: accent colours, clear signage with pictures and text, identification of bays.

 Orientation: Large face clocks with date and time, photographs of local scenes, clear signage of ward name, visible staff.

 Legibility: Even lighting, matt flooring, uncluttered spaces, discreet security measures.

 Meaningful activity: snack trolley, memorabilia, social spaces.

 Familiarity: distinct crockery, memory boxes

Developing the workforce and changing culture

 Dementia champions

 Competency pack

 Resource pack, Understanding dementia

 E learning package

 External course Level 2

 Development training days

 Protective mealtimes

 Developing and including the ward volunteers

 “Butterfly Scheme”

 “This is Me” leaflet

 Dementia awareness days

Assessment and referral:

The National Dementia CQUIN introduced in April 2012 has three elements focused on identifying unmet need in the acute physical hospital setting. It was based on the methodology of find, assess and refer.

 All patients aged 65 years and over are asked the “memory question” within 72 hours of admission

 Refer patients with a AMT of 8 or below to the memory services

 Monitor the use of anti-psychotic medication

14 Supporting patients on discharge:

 Follow on referral from the memory services

 Carers information leaflet

Move to Shackelton Ward

The dementia inpatient unit was moved on 3rd June 2013 from its premises in Ryde to a new interim ward on St Marys Hospital site. The new Shackelton Ward provides 7 beds, modern well-appointed facilities and the principles of the dementia friendly environment have been followed when designing the ward. The outcome quality measures are reported and monitored at the Dementia Officer Level Steering Group.

The care pathway for specialist inpatient assessment and treatment can be found in Appendix Two

Dementia Intensive Treatment Service (DITS)

This team supports and educates residential homes, nursing homes, families and carers with people who have problematic symptoms of dementia, displaying challenging behaviour, or other complex presentations and whose placements are at risk. By supporting staff and carers at times when behaviour becomes challenging it is evidenced to prevent the escalation to crisis and reduce the number of placement breakdowns or hospital admissions.

Dementia Alliance: Dementia Challenge Fund

The IoW Clinical Commissioning Group (CCG) led the formation of the Dementia Alliance which was awarded monies from the NHS South of England Dementia Challenge Fund and CCG. The fund enabled local communities to identify and implement practical solutions to the problems faced by people living with dementia. This included the following projects on the island:

 Dementia Community Cafés  Alzheimer Cafés  Dementia Awareness Training Lighting (Dementia Awareness Reaching Communities)  St Mary’s Hospital -The butterfly scheme  Raise awareness of dementia and increase information and support  Dementia Advisory Service  Circles of Support  Community Memory Groups – Age UK IW

Dementia Friendly Communities

The Isle of Wight Clinical Commissioning Group (CCG) with the Department of Health investment, has commissioned Age UK IW to pilot a project to develop dementia friendly communities on the Island. This is in response to the Prime Minsters dementia challenge launched in 2012.

15 The Prime Ministers dementia challenge involved 20 cities, towns and villages signing up to becoming more dementia friendly. A dementia friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them5. Ryde Business Association and Town Council are leading the work for Ryde to become the first Dementia Friendly Community on the Isle of Wight. The Mayor of Ryde is championing this. Further information about this can be found in Appendix Three.

Dementia friendly environment

In the Prime Minsters Challenge in 2012 key commitment 3 was an innovation challenge prize of £1 million pounds which the Isle of Wight NHS Trust was awarded with support from the Isle of Wight Clinical Commissioning Group, Isle of Wight Local Council and Care homes.

The project is a step towards a dementia friendly Island, by providing some of the most vulnerable people with dementia with an environment which is standardised and harmonised across different care settings, reducing the distress caused by transitions of care and improving the quality of life and safety in each care environment.

The project focuses on these key areas

 Safety- reducing falls and enhancing orientation by good lighting, signage and decor. Where possible these initiatives will be standardised across the care homes and hospital settings – for example flooring and decoration will have the same colour schemes. The person with dementia who needs admission from a care home to hospital will have their distress reduced by the familiarity of similar decor in hospital to their home.

 Encouraging outdoor recreation by improving access to gardens, enhancing garden areas by use of raised beds and sensory garden planting, and making areas safe.

 Provision of specialist equipment to encourage meaningful personalised activity.

My Life A Full Life

The My Life A Full Life programme is a collaboration between the Isle of Wight Clinical Commissioning Group, Isle of Wight NHS Trust, the Isle of Wight Council and third sector organisations. The initiative works in partnership with local people, voluntary organisations and the private sector to deliver a more coordinated approach to the delivery of health and social care services for older people and people with long term conditions on the Island. Dementia is being included in this programme to support integrated working across organisations to deliver effective and sustainable services that will improve the patient experience and outcomes.

Better Care Fund

The fund is being developed for 2014/19 and aims to support the integration of health and social care. The fund is an opportunity for local services to transform and improve the lives of the people that need it most.

16 4 Consultation

The development of this strategy was supported by a two month consultation period which involved a workshop delivered by the Dementia Steering Group. 106 people attended the workshop on 15 th October 2013, including staff from the IW NHS Trust, Local Authority, Public Health, residential and care homes, third sector organisations, carers and service users.

People with dementia, their families and carers shared what they felt was working well, what challenges they faced and what they felt is needed to ensure people live well with dementia on the Isle of Wight. They said they wanted to receive an early diagnosis and timely, good quality information that will help them make informed choices about their care, they want to be involved in the care plan and their families and carers if appropriate.

The consultation draws on the concept of the “Dementia Journey”, designed by Dementia Partnerships UK. It helped to focus the thinking on the way dementia affects individuals at the various stages and how support needs to vary from stage to stage:

Challenges: It was identified that there are still a number of challenges that we need to address to ensure people live well with dementia on the island:

 A timely diagnosis

 Reducing stigma and discrimination

 Addressing isolation and loneliness

 Knowing what your choices are

 Keeping people at home for longer and managing their challenging behaviour

 People in the hospital setting being treated with dignity and respect

 Care planning including end of life care planning

 Support for carers

 Understanding personal budgets

Priorities:

The following areas were highlighted as priorities for the next five years from the consultation:

17  Dementia friendly communities that contribute to greater awareness of dementia and reduce stigma

 Timely accurate diagnosis of dementia

 Better post diagnostic support for people with dementia and their families

 People with dementia, their families and carers are involved in the care planning of their illness throughout the journey

 More people with dementia living a good quality of life at home for longer

 People with dementia in hospitals or other care settings being treated with dignity and respect

A common theme throughout the consultation was the importance of supporting carers. The consultation report can be found in Appendix Four.

5 Priority Areas for Action

The priority areas for action have been broken down into the four stages:

1. Awareness and prevention

2. Diagnosis and post diagnostic support

3. Care at Home

4. Specialist Care

With priority areas highlighted under each that will inform the action plan.

5.1 Awareness and Prevention

Prevention

There is evidence that healthy living behaviours such as better diet and physical activity can reduce the risk to a person of developing dementia or delay its onset. 17 percent of people with dementia have vascular dementia which may be prevented through healthy living behaviours and 10 percent of people have both vascular dementia and Alzheimer’s. It is estimated that up to 10 percent of dementias are alcohol related.

Awareness and education is important in promoting healthy living behaviours especially in vulnerable groups.

18 Dementia friendly communities that contribute to greater awareness of dementia and reduce stigma

Many people with dementia have reported feeling unsupported and not part of their community; they are not able to take part in activities that they enjoyed before they developed the condition. The DFC survey highlighted that 42 percent of people felt their area was not geared up to help people live with dementia.

35 percent of people with dementia said that they only go out once a week or less and 10 percent said once a month or less4. While people face barriers in engaging with their community, it is possible to make changes that can make their day to day lives much better.

Figure 4: The Alzheimer’s Society’s ‘Building dementia friendly communities: a priority for everyone’

A dementia friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them4. The Alzheimer’s society has laid out ten key areas communities should focus on, these areas are described in Appendix Three.

19 A priority for the Island is to increase the number of dementia friendly towns where organisations in local communities are being supported to attend training and improve their understanding about dementia and how to assist and direct people to the appropriate support. By improving the public’s understanding and increasing their confidence in engaging and supporting people with dementia, it ensures people can live safely and confidently within their communities for longer.

Age UK IW is leading on developing Ryde as our first dementia friendly town on the Island. The Alzheimer’s Society ‘Building dementia-friendly communities: A priority for everyone’ report highlighted that a year living in the community with dementia (excluding the initial memory services assessment) is estimated to cost £24,128. This includes the cost of an integrated health and social care package, together with respite, therapies and medication. A year in residential care costs an average of £35,424. Therefore, for every person who is able to live at home rather than in residential care there is a saving of £11,296 per year or £941 per month. If just 5% of admissions to residential care were to be delayed for one year as a result of dementia-friendly communities, there would be a net saving of £55 million per annum across England, Wales and Northern Ireland.

A Dementia Friendly Communities Steering Group has been formed to explore how to expand the dementia friendly communities’ programme on the Island.

5.2 Diagnosis and Post Diagnostic support

Timely accurate diagnosis of dementia

There is a great deal that can be done to help people to live well with dementia. When people are diagnosed early enough and receive the appropriate support in the early stage, it can have a significant impact on the degree to which someone is able to manage the condition over time and live independently for longer.

People with dementia currently wait up to three years before reporting symptoms to their doctor 6. It is estimated that 40 percent of the people on the Isle of Wight that live with dementia have not been diagnosed and do not have access to post diagnostic support.

Having an early diagnosis can ensure people plan for the future, make informed choices about how they would like to be cared for and prevent future crisis resulting in a delay on the need for intensive care support.

Historically healthcare professionals did not see the value in giving someone a diagnosis of dementia. Evidence has demonstrated the impact that early diagnosis and access to post diagnostic support can have for both the person living with dementia and their carer7. The Isle of Wight has invested, over the past three years, in raising awareness, educating the public and providing training

20 to GP’s and hospital staff around dementia. There is evidence that early diagnosis and intervention services are cost effective once they are established8

By 2015 the Department of Health will be asking that two thirds of people with dementia have a diagnosis.

Ensuring that the time between referral and assessment is as minimal as possible is important in achieving access to the appropriate support and information for the person and their carer.

Better post diagnostic support for people with dementia and their families

There is currently no national measure of the provision of post diagnostic support or understanding of what good post diagnostic support looks like. The Isle of Wight Clinical Commissioning Group, NHS Trust, Local Authority and Dementia Alliance have developed an integrated dementia care pathway for people on the Island (Figure 3). This care pathway has been shared nationally in the State of the Nation report12 and used as an example of good practice by many areas when developing their own pathway.

In 2015 the Isle of Wight Clinical Commissioning Group will be reviewing this pathway to understand the patient and carer outcomes achieved and how to ensure the future demands are met with people feeling supported to live safe independent lives in the community.

5.3 Care at Home

Care Planning

It is important that people with dementia, their families and carers are involved in the care planning of their illness throughout the journey.

A care plan is an agreement between the person, the healthcare professional, and /or social services and the carer about how to manage the persons health day to day and in the future. It is important that people and their carers are clear on the options available to them and involved in the planning of their care throughout the journey and anticipatory of the future. Care planning can prevent someone from escalating into crisis and reduce unplanned hospital stays.

Advanced care planning ensures people are involved in the planning earlier enough that they have mental capacity to make informed decisions about their wishes for the future. This could include the use of lasting powers of attorney, advance decisions and advance statements.

From April 1st 2014 GP’s will have a Directed Enhanced Service (DES) for personalised care plans for people that are at risk of unplanned admissions to hospital or have complex medical problems.

21 The process for care planning at the different stages and the support required will be reviewed as part of the dementia pathway review. People who do not enter the post diagnostic support pathway also need to be considered in terms of how they are reached out to and supported as their needs change.

Supported to live at home

The Alzheimer’s Society ‘Support Stay Save’ report found that 83 percent of people with dementia want to stay in their own home. One in ten thousand respondents said the person was admitted into care because they were not receiving support in the community. It is felt with adequate support in the community, admission into hospitals and care homes would be greatly reduced.

Two thirds of all people with dementia live in their own homes in the community. Throughout the different phases of dementia a person’s needs will change from information and transport for example, to needing help maintaining their homes, gardens, physical health and peer support networks.

In 2013 thirty percent of people that attended the Long Stay Memory Clinics on the Isle of Wight lived alone. In a national survey it was found that 62 percent of people that live with dementia on their own are lonely and it can sometimes be hard for them to access services which only adds to the possibility of social isolation9.

Evidence suggests:

 Early provision of support at home can decrease institutionalisation by 22%

 Even in complex cases, and where the control group is served by a highly skilled mental health team, case management can reduce admission to care homes by 6%

 Older peoples’ mental health services can help with behavioural disturbance, hallucinations and depression in dementia, reducing the need for institutional care

 Carer support and counselling at diagnosis can reduce care home placements by 28%10

The role of telecare and assistive technology has developed a wealth of evidence for keeping people safe at home for longer and supports in managing any comorbidities a person may have.

The Isle of Wight Clinical Commissioning Group is piloting a crisis response team which put a package of care around a person for 72 hours. The outcome of this pilot will be monitored and reported on in April 2015.

Supporting Carers

Carers are the most valuable resource we have on the Island and are vital in enabling people to live well with dementia at home. Research shows that carers of people with dementia experience

22 greater strain and stress than carers of other older people and are at risk of depression and physical health problems.

Carers are estimated to save the nation £7 billion a year. It is a statutory legal obligation of the Local Authority to support carers by offering carers assessments to ensure that they are willing and able to continue caring. Care managers and community support staff offer carers assessments together with a support plan, advice on benefits, carers services, carers therapies, support groups, sitting services and respite care schemes.

This strategy supports the implementation of The Isle of Wight Carers Strategy which was published in 2013 by the Isle of Wight Council.

5.4 Specialist Care

It is part of the Prime ministers challenge to ensure that people with dementia in hospitals or other care settings have improved quality of care and be treated with dignity and respect

Care homes

At least two thirds of people in care homes live with dementia 11. There are 64 homes for older people on the Isle of Wight, 53 residential homes, 11 nursing homes, all of which accept people with dementia depending on their level of need, with some homes taking more dementia patients than others. In 2011 there was 1,798 people aged 65 and over resident in a care home. In March 2014 there were 377 residents with a primary need of dementia supported by the local authority to live in care homes.

Based on the Islands estimated prevalence of dementia, 724 people live with dementia in a care home on the Island. If our proportion of people living in care homes remains the same, by 2024 this will have increased to 894 as illustrated in Table 5.

A group of care homes bid for funds from the Dementia Environment Programme to support them in delivering therapeutic activities that enable positive environments where the individuality of the resident is respected. There are a number of training programmes along with the Dementia Intensive Treatment Service (DITS) that support staff in developing their knowledge and skills to enable people living with dementia to lead as fulfilling a life as possible.

Hospital Care

70% of acute hospital beds are currently occupied by people over the age of 65 and half of these may have a cognitive impairment including dementia11. Hospitals are particularly challenging environments for people with dementia and they experience worse outcomes in terms of length of stay, mortality and institutionalisation compared with those without dementia for comparable illnesses11, this is estimated to cost £6 million per year.

23 End of Life Care

People with dementia do not receive the same level of end of life care as those that are cognitively in tact13. Dementia can impair a person’s ability to make themselves understood and quite often aggressive behaviour can be a result of pain. It has been reported that people with dementia receive less analgesia than other people of a given illness12.

The Department of Health State of the Nation Report (2013) highlighted that too many people with dementia are not supported to have early discussions and make plans for their end of life care. Findings from the National Survey of Bereaved People, of which one fifth of the responses were related to dementia found that 1 in 10 of the bereaved rated their loved ones end of life care as poor.

The Isle of Wight Clinical Commissioning Group is reviewing the end of life care pathway to support an integrated model and will report on this in April 2014.

It is good practice that everyone in a care homes have an advanced care plan that is developed with their carer.

6 Action Plan

The Action Plan is split into four sections:

1. Awareness and prevention

2. Diagnosis and post diagnostic support

3. Care at Home

4. Specialist Care

Stakeholder organisations are invited to contribute to the action plan and will be invited to report their activities to the Dementia Steering Group which meet bi-monthly.

Action Plan 1: Awareness and Prevention

24 Outcome Action Time & Lead People are aware of the  As part of the Healthy Communities Isle of Wight Council – benefits of a healthy Delivery Plan, there is a co-ordinated Public Health – Healthy diet and lifestyle at approach to map local assets with the aim Communities Group reducing their risks of of increasing utilisation of local assets for vascular dementia better health and wellbeing  Healthy lifestyle messages are promoted to GP Practices over 55’s People are aware of  Dementia Friendly communities work with MLFL/ NHS / IWC / 3rd dementia, the signs and local business to educate and support sector/ how to support  Materials available to schools as part of Children and Young someone with Citizenship Education People Partnerships dementia effectively (CHIPS)  Appropriate materials sourced and Dementia Steering distributed in GP practices Group  Memory Service to hold Dementia IW NHS Trust Awareness events

People will not feel The expansion of the Dementia Friendly Dementia Friendly Isle stigma or Communities programme on the Isle of Wight of Wight Steering discrimination and will Group/ feel confident to take Dementia Steering part in meaningful Group activities to them in their community A confident and trained Third Sector dementia awareness training Dementia Alliance* workforce on how to programmes are provided to support public, support people with private and Third sector organisations that have dementia significant interaction with the public  Scoping the training available on the Island  Third Sector training programmes  Age UK IW IOW Dementia friendly communities training programme  Dementia Friends training for CPPE – Carolyn Ward th Pharmacists and Technicians (CPPE) 24 April 2014

* The Dementia Alliance is a group of third sector organisation including: Age UK IW, Alzheimer Café and Alzheimer Society. Contact details for these organisations can be found in Appendix Five.

Action Plan 2: Diagnosis and post diagnostic support

Outcome Action Time & Lead Early identification of  As part of the NHS Health check programme Isle of Wight Council – memory problems for people 65 – 74 years of age people will Public Health

25 have a brief discussion regarding dementia: the key signs, how you can limit your risk and how to access support should you or someone you care for need further assessment for dementia. GP Practices  People over 75 and those that need a complex package of care have a named GP

When people are  Review dementia care pathway CCG/Dementia concerned about their Steering Group memory they are  Medicines with a risk of adversely affecting GP/Memory Service referred and assessed cognitive function, signs and symptoms are CCG - Medicines quickly and effectively reviewed to reduce their impact on Management/ IW NHS memory and behaviour Trust People have a range of  Review dementia care pathway CCG/Dementia post diagnostic support Steering Group services available to them People know how to  Central place to go to for signposting Isle Help access information and  All newly diagnosed people will be referred Alzheimer’s Society support and they are to the Dementia Advisor IW NHS Trust/CCG/ Isle aware of the services  Clear care pathways published of Wight Council that are available to  Scope the information required at the Dementia Steering them different stages of the dementia journey Group and do a needs gap analysis  Increase use of information, leaflets at IW NHS Trust support groups, Memory Service, GP’s GP Practices Dementia Advisors Dementia Steering Group People will only say  All the agencies on the Island have a shared GP, NHS Trust, Isle of their story once register of people with a diagnosis of Wight Council, dementia patients/ carers (forums)  A risk of getting lost – PCSO have a list of Police - PCSO people that are high risk of getting lost A confident and trained All health, social care and third sector workforce on how to organisations involved in the care of people support people with with dementia have continuous professional dementia and vocational development in dementia  Staff are aware of the training programmes NHS Trust, Isle of available Wight Council, Dementia Alliance  MSNAP Accreditation maintained IW NHS Trust  Health Education England foundation level IW NHS Trust/ IWC dementia training programme  GP training by dementia Clinical Lead CCG

 DITs Module – Dementia staff training IW NHS Trust

26 sessions  Third Sector training Programmes Dementia Alliance  Police utilise the APP ‘Serenity GO’ that Police advises how to approach/support people with Dementia People have the  DeNDRon Research Nurse at St Mary’s Jo Wilkins opportunity to be to scope suitable trials and recruit. involved in clinical trials for dementia

Action Plan 3: Care at Home

Outcome Action Time & Lead All people are given the  All people at risk of unplanned admissions GP Practices opportunity to have a to hospital or have complex medical care plan problems have a personalised care plan  All people are involved in the development of their care plan & Risk Assessment including: o Defining peoples triggers for IW NHS trust - Memory distress e.g. personal care needs service o Defining of peoples own crisis GP Practices o Identify the appropriate tools to Dementia Steering develop a care plan Group o People know who to contact, including out of hours.  This is me booklet is offered to all people IW NHS Trust with dementia  Patient Passport April 2015, IOW CCG Ensure a consistent  Scope a befriending scheme/pathway for CCG approach for all people younger people and people that live alone of all ages  People with early onset dementia have Dementia Steering appropriate age related services offered to Group them  Scope services available on the Island for carers of people with dementia. Dementia Steering Group Carers feel supported,  Implementation of the Isle of Wight Isle of Wight Council their own personal Carers Strategy 2013 IW NHS Trust health needs are cared  Carers are offered a carers assessment Isle of Wight Council for and they understand the support services available to them When a crisis occurs  Crisis plans are in place to inform Home crisis response the person caring for people who to contact, when to support DITS them feels supported in individuals and their carers Dementia Advisor the most appropriate Alzheimer’s Café way to mitigate the IW NHS Trust

27 effects, whether that Isle of Wight Council be a carer, family Carers UK member, care home  Home crisis response team to report on IW NHS Trust staff member the pilot to the Dementia Steering Group in April 2015

Support people to stay  Engagement to understand what resource is CCG safe and live at home currently out there and what resources we Dementia Steering need to develop Group  Life line & skills – developing the skills for Isle of Wight Council carers e.g. safely moving , managing challenging behaviour  Fire service – supporting making the home Fire Service safe  Blue Lamp Trust – advising on house Blue Lamp trust security for elderly people  Identifying hard to reach groups to ensure Dementia Steering they are aware of the support and tools Group available to live safely o House bound o Those that live alone o Frail and elderly

When people are in  Scope dementia as part of project Serenity CCG/ IW NHS Trust/ crisis and the police are  Dementia training for police Police called, they are treated Dementia Alliance with dignity and respect and the police are able to minimise their distress by recognising and understanding their condition People who are at risk  Pilot technologies to ensure people remain ICES Equipment store of getting lost are safe whilst maintaining their dignity e.g. IW NHS Trust supported with location device technology to maintain  Neighbourhood return project Age UK IW / Police their safety

Action Plan 4: Specialist Care

Outcome Action Time & Lead People who are  Scoping Rapid Assessment Interface and CCG admitted to hospital Discharge are assessed and  CQUIN for acute hospitals: Dementia Modern Matron supported screening tool used for over 75’s admitted IW NHS Trust appropriately to hospital  A trained and effective workforce o A target to be identified for staff in St Marys to be HEE foundation level dementia training

28 o Dementia awareness days o Volunteers trained in Cognitive Behaviour Therapy  Dementia Friendly Environment Bid IW NHS Trust o 2 wards in St Marys Hospital o 11 Residential Homes People and their carers  Information provided and discussed with NHS trust are aware and people and their carers Isle of Wight Council understand the options  People with dementia and their carers are Hampton Trust available for end of life involved in their end of life care planning care and can make whilst they have capacity informed decisions  Staff are confident in delivering bad news whilst they have and supporting people to develop their end capacity about their of life care plans e.g. resuscitation plans future care.  People are aware of the support services out there to make informed choices  All people in care homes have an advanced Care Homes/ GP care plan Practices People die with dignity,  The End of life Care plan review being CCG in the environment published in April 2014 is to inform this they want and action plan respecting theirs and  Trained and compassionate staff their families wishes o HEE foundation level dementia IW NHS Trust training Care Homes o Staff are supported with regular GPs supervision An informed and  Care homes to support their staff with DITS – IW NHS trust effective workforce vocational and professional development Isle of Wight Council  Training of hospital ward staff o HEE Foundation level dementia IW NHS Trust training  Training for memory service– breaking bad Memory Service/ GP news Practice  Increase general awareness of alternative non-medication strategies to managing DITS – IW NHS Trust behavioural problems

7 Governance

The Isle of Wight Living Well With Dementia Strategy builds on the learning and requirements from the Department of Health State of The Nation Report, 2013 and Living Well With Dementia Strategy 2009 and has benefited from engagement with people with memory problems, carers, providers, clinicians, public sector and voluntary sector organisations.

29 It is recommended that the multi-agency Dementia Steering Group oversees the delivery of this strategy. The action plan and key performance indicators arising out of this strategy will be reported and monitored by the Dementia Steering Group.

30 Appendix One Living Well With Dementia: A National Dementia Strategy

The key objectives from the National Strategy:

Objective 1: Improving public and professional awareness and understanding of dementia. Public and professional awareness and understanding of dementia to be improved and the stigma associated with it addressed. This should inform individuals of the benefits of timely diagnosis and care, promote the prevention of dementia, and reduce social exclusion and discrimination. It should encourage behaviour change in terms of appropriate help-seeking and help provision.

Objective 2: Good-quality early diagnosis and intervention for all. All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment; an accurate diagnosis, sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis. The system needs to have the capacity to see all new cases of dementia in the area.

Objective 3: Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available, both at diagnosis and throughout the course of their care.

Objective 4: Enabling easy access to care, support and advice following diagnosis. A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.

Objective 5: Development of structured peer support and learning networks. The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services.

Objective 6: Improved community personal support services. Provision of an appropriate range of services to support people with dementia living at home and their carers. Access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Accessible to people living alone or with carers, and people who pay for their care privately, through personal budgets or through local authority-arranged services.

Objective 7: Implementing the Carers’ Strategy. Family carers are the most important resource available for people with dementia. Active work is needed to ensure that the provisions of the Carers’ Strategy are available for carers of people with dementia. Carers have a right to an assessment of their needs and can be supported through an agreed plan to support the important role they play in the care of the person with dementia. This will include good-quality, personalised breaks. Action should also be taken to strengthen support for children who are in caring roles, ensuring that their particular needs as children are protected.

31 Objective 8: Improved quality of care for people with dementia in general hospitals. Identifying leadership for dementia in general hospitals, defining the care pathway for dementia there and the commissioning of specialist liaison older people’s mental health teams to work in general hospitals.

Objective 9: Improved intermediate care for people with dementia. Intermediate care which is accessible to people with dementia and which meets their needs.

Objective 10: Considering the potential for housing support, housing-related services and telecare to support people with dementia and their carers. The needs of people with dementia and their carers should be included in the development of housing options, assistive technology and telecare. As evidence emerges, commissioners should consider the provision of options to prolong independent living and delay reliance on more intensive services.

Objective 11: Living well with dementia in care homes. Improved quality of care for people with dementia in care homes by the development of explicit leadership for dementia within care homes, defining the care pathway there, the commissioning of specialist in-reach services from community mental health teams, and through inspection regimes.

Objective 12: Improved end of life care for people with dementia. People with dementia and their carers to be involved in planning end of life care which recognises the principles outlined in the Department of Health End of Life Care Strategy. Local work on the End of Life Care Strategy to consider dementia.

Objective 13: An informed and effective workforce for people with dementia.

Health and social care staff involved in the care of people who may have dementia to have the necessary skills to provide the best quality of care in the roles and settings where they work. To be achieved by effective basic training and continuous professional and vocational development in dementia.

Objective 14: A joint commissioning strategy for dementia. Local commissioning and planning mechanisms to be established to determine the services needed for people with dementia and their carers, and how best to meet these needs. These commissioning plans should be informed by the World Class Commissioning guidance for dementia developed to support this Strategy and set out in Annex 1.

Objective 15: Improved assessment and regulation of health and care services and of how systems are working for people with dementia and their carers.

Inspection regimes for care homes and other services that better assure the quality of dementia care provided.

Objective 16: A clear picture of research evidence and needs. Evidence to be available on the existing research base on dementia in the UK and gaps that need to be filled.

Objective 17: Effective national and regional support for implementation of the Strategy. Appropriate national and regional support to be available to advise and assist local implementation of the Strategy. Good-quality information to be available on the development of dementia services, including information from evaluations and demonstrator sites.

32 Appendix Two Phase 3: Inpatient Assessment and Acute Treatment

Some individuals with dementia may require care in a specialist inpatient assessment and treatment unit, and others may require care in a general hospital for other medical or surgical issues. The care pathways for both phases f care are set out below.

33 34 Appendix Three Dementia Friendly Communities

The Alzheimer’s Society’s ‘Building dementia friendly communities: a priority for everyone’

Communities working to become dementia friendly should focus on the following 10 key areas:

1. Involvement of people with dementia

Shape communities around the needs and aspirations of people living with dementia alongside the views of their carers. Each community will have its own diverse populations and focus must include understanding demographic variation, the needs of people with dementia from seldom heard communities, and the impact of the geography, e.g. rural versus urban locations.

2. Challenge stigma and build understanding

Work to break down the stigma of dementia, including in seldom heard communities, and increase awareness and understanding of dementia.

3. Accessible community activities

Offer organised activities that are specific and appropriate to the needs of people with dementia. Also ensure that existing leisure services and entertainment activities are more inclusive of people with dementia.

4. Acknowledge potential

Ensure that people with dementia themselves acknowledge the positive contribution they can make to their communities. Build on the goodwill in the general public to make communities dementia friendly.

5. Ensure an early diagnosis

Ensure access to early diagnosis and post-diagnostic support. Have health and social care services that are integrated and delivering person-centred care for people with dementia in all settings.

6. Practical support to enable engagement in community life

Deliver a befriending service that includes practical support to ensure people with dementia can engage in community life as well as offering emotional support.

7. Community-based solutions

Support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes. Community based solutions to housing can prevent people from unnecessarily accessing healthcare and support people to live longer in their own homes.

35 8. Consistent and reliable travel options

Ensure that people with dementia can be confident that transport will be consistent, reliable and responsive and respectful to their needs.

9. Easy-to-navigate environments

Ensure that the physical environment is accessible and easy to navigate for people with dementia.

10. Respectful and responsive businesses and services

Promote awareness of dementia in all shops, businesses and services so all staff demonstrate understanding and know how to recognise symptoms. Encourage organisations to establish strategies that help people with dementia utilise their business.

36 Appendix Four Dementia Engagement Event

October 15th 2013

Objective:

The workshop brought together all the stakeholders on the Island to identify our priorities over the next three years that will further drive improvements to support people to live well with dementia. The information collected from this day will inform the Islands Dementia Strategy.

The purpose of updating the Islands Dementia Strategy is to deliver an integrated approach across all major stakeholders to ensure that people live well with dementia on the Island.

How the afternoon was structured:

The afternoon was split into 6 phases, reflecting the journey of a person with memory problems or dementia and that of his or her carer/family

The objective of the workshop is to understand for each phase:

– What is working well

– What are the particular challenges we are facing

– What we need to start doing to ensure that people live well with Dementia on the Isle of Wight.

The day was attended by 97 people that included people from NHS Trust, Local Authority, care homes, third sector organisations, carers, people that live with dementia.

Below is a breakdown of what people said and the comments ordered depending on the number of tables that highlighted this as a key area. Those at the top being the areas raised by the most tables.

37 What people said:

Phase 1: When memory problems have prompted me, and/or my carer/family to seek help

(Comments ordered by those that were mentioned the most being at the top)

What is Working Well Community can be supportive National media Dementia awareness events Over 75 checks by GPs Direct access to memory service by phone

What are the challenges Stigma Knowledge about dementia to know to seek help Difficult topic to raise with relatives Concerns not always taken seriously by GP

What needs to happen Information available at more locations around the Island Local communities need to advocate support Break down stigma by education and workshops Raise awareness about the ability to slow down the disease if people seek help Education in schools Public Health awareness, TV campaigns/ radio etc. GP's trained to spot the symptoms

Phase 2: Learning that the condition is dementia

What is Working Well Alzheimer cafes Memory Clubs Diagnosis quick and robust Dementia awareness events Internet Access to diagnosis

What are the challenges

38 GP Symptom recognition and signposting Time between GP and memory service - Grief/bereavement/depression Not all GP practices give the same service Should Alzheimer's Café be renamed? As there are other forms of dementia

What needs to happen Central place to signpost to for information (health watch/MLFL Hub?) More support for carers Education of family about the condition Education for all staff in GP practices, 'dementia friendly practices' Circles of support Support with acknowledging the condition Expand Dementia Alliance to other organisations

Phase 3: Learning more about the disease, how to manage, options for treatment and care, and support for me and my carers/families

What is Working Well Memory Clubs Dementia awareness events Diagnosis explained by psychiatrist well Alzheimer's café Memory Service Hampton trust - work with family Carers assessment Alzheimer's society and Age UK will visit the home and provide advice Self referral to dementia advisors Awareness campaign run in schools

What are the challenges No signposting Services keep changing Support for the carer Transport - social isolation Feeling of abandonment Those that live alone Services for all ages (40 - 50s) Access to specialist services People are expected to access information as condition deteriorates Little support in community Requiring emergency advice Funding

39 Not everyone has access to the computer Engaging male carers and people with dementia

What needs to happen People should be checked on every 6 or 12 months after diagnosis Services available for all age groups with more appropriate meaningful activities Dementia friendly practices - training for all staff in the practices Support in the community by 3rd sector - volunteers doing post diagnostic support Communication about services and any changes and how to access Involve carers Information provided at the right time, right amount etc. Post diagnostic support for the carer Supporting those that live alone, no family or money

Phase 4: Getting the right help at the right time to live well with dementia, prevent crises, and manage together

What is Working Well Alzheimer cafes Technology to support people to manage at home Carer & family support DARC ABC course 2 hours a week sitting

What are the challenges Knowing what your choices are Support from social services Community support Personnel budgets Assistive technology Sitting service - staff change regularly, not punctual Protecting form vulnerable (unsolicited calls) Education & awareness within healthcare and outside stigma Physical needs of the person with dementia are challenging for the carer alone to manage Help is brought in at the right time Getting hold of social service/care manger when you need help Support in adapting the household items to more appropriate equipment 111 ask too many questions

What needs to happen

40 Care planning in advance to prevent crisis Multi agency community dementia team A place people can phone for help or advice Better information around the choices around end of life options Carer support - health checks etc. Support to stay living in your home e.g. technology Supporting communities to manage peoples behaviour better within the community Carer involved in care planning Gaining consent to share information as early in the process Consistent messages in awareness campaigns Community involvement events Promote success stories of people living well with dementia People sharing their stories more Volunteers need recruiting and training, a willingness to help Signposting Education open to everyone Support and develop community networks of families etc. to support each other Integrated working Dementia Champions in all sectors Rolling out the amber care bundle Quick intervention should carers become ill Unified budget across health and social care - money follows the patient Post diagnostic support later in the journey More clarification need on rules and responsibilities of health / LA Meaningful activities offered

Phase 5: Managing at more difficult times (including if it is not possible to manage at home)

What is Working Well Training for residential and care homes staff DITS team useful but frequently short staffed Support from memory service Respite care District nurses are good at signposting when you need help

What are the challenges Managing aggression and hostility Recognition of when to include others at appropriate stages Stigma Health budgets Moving people People that want to stay at home but have become too unsafe

41 NHS landscape changing and its priorities Increased responsibility on services with less money Contacting care managers Incontinence Housing options Memorabilia End of life care plan offered to all GPs complete anticipatory care plans

What needs to happen Training of Hospital ward staff so they have a better understanding More support to help people to stay safe and live at home Decision making - mental capacity are people being heard? Family involved in care home activities etc. Carer support with transition from home to care home Involve the person in the care Care tailored to the individual - more detailed information about persons likes and dislikes Expand SPARCCS More housing options More information accessible about housing options available - those that specialise in dementia Education in schools to promote awareness in the community and how to support behaviour positively Education around managing challenging behaviours better in care homes Local media sharing success stories of dementia friendly communities and positive impact More sheltered accommodation with a spectrum of care where care is increased as condition develops Carers educated on who to contact for what services e.g. incontinence Education of care staff Increase support for DITS Joined up services Prompter services for patients with dementia in A&E

Phase 6: Receiving care, compassion and support at the end of life

What is Working Well Care packages work well Palliative care team taken on dementia

What are the challenges Difficult decisions left too late to ensure individuals wishes are met

42 If a person has no family stigma Personnel budgets Need to introduce 'this is me' at relevant time not diagnosis stage Medication usage

What needs to happen Promote conversations around end of life care planning Information about end of life options available e.g. dying at home involvement of carer in care plans legal framework living wills keep the physical needs addressed (teeth, glasses) train and support staff to promote end of life care planning and be comfortable with those challenging and difficult conversations and options available access to medication home care and rest bite Education for palliative care team on dementia specifically Hospice end of life week should be available in the community Care plan end of life care and see it though Education Recognising pain in dementia Care out of hours, ensuring just in case supplies are available night sitting resource gives the family a good night sleep Admiral nurses Hampton trust silver dream

Summary

It was identified that there are still a number of challenges that we need to address to ensure people live well with dementia on the island:

 A timely diagnosis

 Reducing stigma and discrimination

 Addressing isolation and loneliness

 Knowing what your choices are

 Keeping people at home for longer and managing their challenging behaviour

 People in the hospital setting being treated with dignity and respect

 Care planning including end of life care planning

 Support for carers

43  Understanding personal budgets

The following areas were highlighted by the Dementia Steering Group as priorities for the next five years from the consultation:

 Dementia friendly communities that contribute to greater awareness of dementia and reduce stigma

 Timely accurate diagnosis of dementia

 Better post diagnostic support for people with dementia and their families

 People with dementia, their families and carers are involved in the care planning of their illness throughout the journey

 More people with dementia living a good quality of life at home for longer

 People with dementia in hospitals or other care settings being treated with dignity and respect

Common theme throughout was the importance of supporting carers.

44 Appendix 5

Dementia Alliance Contact Details

Age IW

Age UK Isle of Wight is a local, independent charity working to improve later life for local people. As part of the Dementia Alliance for the Island we work to support people with dementia and their families and carers by:

 Running Community Memory Groups  Offering volunteer support to relieve loneliness and maintain independence  Leading in the development of Dementia Friendly Communities  Offering training and support for all affected by and interested in dementia

Website: www.ageukiw.org.uk

Address: Age UK Isle of Wight, 147 High Street, Newport, Isle of Wight, PO30 1TY

Tel: 01983 525282

Alzheimer’s Café

An Alzheimer Café (AC) is a type of post-diagnostic group intervention, held monthly, that provides education, information about dementing illnesses, as well as various types of support for people with dementia, their carers, and interested others . ACs take the form of ‘a social gathering’ in a café-like setting where people can enjoy meeting together and be supported to stay connected with the wider community. AC’s are organised and coordinated by a steering committee who are knowledgeable about dementia and organise the AC with the help of local volunteers and health and social care professionals.

Website: http://www.alzheimercafe.co.uk/

Email: [email protected]

Telephone: 07742 699 930 (voicemail)

Alzheimer’s Society

Website: www.alzheimers.org.uk

Address: Alzheimer's Society, The John Pounds Centre, 23 Queen Street, Portsmouth PO1 3HN

Telephone: 02392 892035

45 Organisations are invited to join this group. Please email Nik Attfield ([email protected]) for further information.

This list is correct on 7th May 2014

46 References

47 1 Dementia – A state of the nation report on dementia care and support in England, November 2013

2 Dementia resources, NHS Health Check

3 Alzheimer’s Society, 2011, learning disabilities and dementia factsheet

4 Dementia UK Alzheimer’s Society, 2007

5 Green G, Lakey, L (2013) Building dementia-friendly communities: A priority for everyone

6 Alzheimer’s Society (2002). Feeling the pulse. London: Alzheimer’s Society

7 Mittelman MS, Roth DL, Clay OJ and Haley WE (2007). ‘Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention’. American Journal of Geriatric Psychiatry, 15:9, 780–89.

8 Ibid.

9 Dementia 2013: The hidden voice of loneliness, Alzheimer’s Society, 2013

10 Department of Health. Living Well With Dementia: A National Strategy (2009)

11 Dementia – A state of the nation report on dementia care and support in England, November 2013

12 Scherder EJ, Bouma A (1997). ‘Is decreased use of analgesics in Alzheimer’s disease due to a change in the affective component of pain?’ Alzheimer Disease and Associated Disorders, 11, 171–74.