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Living Well with Dementia

A Dementia Strategy for Dudley

2017-2019

Developed in partnership with:

• Dudley Clinical Commissioning Group • Dudley MBC • Dudley and Walsall Mental Health Partnership Trust • Dudley Group NHS FT • Black Country Partnership NHS FT • Alzheimer’s Society (Dudley)

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CONTENTS

Section Page 1 Introduction 3 2 Vision 4 3 Background and context of dementia 4 4 How many people in Dudley have dementia 6 5 National context 8 6 Views of service users and carers 11 7 An informed and effective workforce 13

8 Promoting health and well-being 15

9 Enabling equal, timely access to diagnosis and support and treatment

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10 Supporting carers 17

11 Preventing and responding to crisis 18

12 Developing dementia friendly communities 20

13 Providing Quality End of Life care 21

14 Care Homes 23

15 Conclusion 23

26 Appendix1 –Plan on a Page 25

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1. INTRODUCTION The Dudley Health and Well Being Board oversee the way in which agencies work together to improve the health of the Dudley population and improve our services. Recognising the changing demands occurring as the incidence of dementia increases, this up-dated Dementia Strategy is part of that effort. This draft strategy has been prepared jointly by a multi-agency group consisting of Dudley Clinical Commissioning Group, Dudley MBC, Dudley Walsall Mental Health Partnership Trust, Dudley Group NHS Foundation Trust and representatives of the Voluntary Sector including Dudley Alzheimer’s Society and Age UK Dudley. The Dudley Strategy for Dementia 2017-19 is based on national guidance, set out in Living well with dementia: A National Dementia Strategy, 20091(NDS), the subsequent Department of Health Quality Outcomes for people with Dementia 2, the NICE Quality Standard for Dementia3, the report from the West Midlands Quality Review Services ‘Review of Dementia Services for the Dudley Health Economy’, Dementia and People with Intellectual Disabilities (2015)4, the Prime Ministers Dementia Challenge for 20205, The Care Act 20146, 2020 Challenge on Dementia Implementation Plan7. The strategy is committed to the quality standard that dementia services should be commissioned from and coordinated across all agencies to deliver high quality care for people with dementia via an integrated approach. The Strategy aims to refocus investment and current resources to improve access to high quality diagnosis, treatment, support, and advice for all people living with dementia in order to improve quality of life from diagnosis to end of life for people with dementia and their carers. This includes ensuring that people with dementia and their carers receive health care and social support from staff that have the skills and training to provide the best quality care and support. The strategy will expand to refocus on primary prevention of dementia and raise awareness of the link between healthy lifestyle and prevention of dementia. It also aims to support people (and their carers) to be cared for in their preferred place of care and reduce the number of people prematurely entering long term care. The Strategy is underpinned by the objectives set out in the Multi Specialist Community Provider (MCP) an integrated new model of care with a focus on supporting population-based health and well-being. This facilitates a network of care that is organised around, and adaptive to people’s changing need. The Dudley MCP will include the services provided by the Dudley and Walsall Mental Health Partnership Trust, the specialist dementia nurses within South Staffordshire and Shropshire Foundation Trust, Dudley Alzheimer’s Society and other voluntary sector organisations. The Strategy is underpinned by the commitment to the values of dignity and respect and the principles of Personalisation and person centred support, to enable individuals to make

1 1http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094058 2 Quality outcomes for people with dementia: building on the work of the National Dementia Strategy, Department of Health , September 2010 3 http://www.nice.org.uk/aboutnice/qualitystandards/dementia/ 4 BPS (2015) Dementia and people with Intellectual Disabilities; Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. The British Psychological Society, Leicester 5 The Prime Ministers Dementia Challenge for 2020 6 The Care Act 2014 7 2020 Challenge on Dementia Implementation Plan

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choices regarding their care need thereby maximising opportunities for independence and improved quality of life. The Strategy is designed to be inclusive of all citizens in Dudley including those of working age. It is also inclusive of service user groups including, adults with conditions such as stroke, learning disability, brain injury or other long term health conditions who may be experiencing further cognitive difficulty. The Strategy is based on national and local evidence (where available), drawing together published data on cost-effective commissioning and care provision, and estimates on current and future costs. The Department of Health (DH) is in the process of commissioning a baseline audit of dementia which will include data on costs. We aim to improve services by:

• Developing and re-designing clear pathways for people to access and move through services

• Improving the patient experience and quality of life • Reducing the incidence of dementia, in the long term, through raising awareness of

the link between health lifestyle and brain health • Strengthening joint working across agencies, developing new models of service

provision • Standardising one holistic assessment process across all agencies • Improving the service in line with evidence based research and meet or exceed the

recommendations in relevant policies or guidelines. • Monitoring & evaluating the impact of these changes by consulting with service users

and carers on the impact of these changes on the service provided. • Challenging ageist stereotypes

2. VISION Our vision is that people in Dudley with dementia and their carers will receive a high quality, integrated and evidence based service which is appropriate to need – delivering the Right Service in the Right Place for the Right Need in a timely, responsive and non-discriminatory manner.

3. BACKGROUND AND CONTEXT OF DEMENTIA

What is dementia?

Dementia is regarded as a severe and devastating disorder which impacts not only on the individuals with dementia but also on the family members who care for them. It is not a disease in itself but the term used for a collection of symptoms including changes in memory, reasoning and communication skills with a gradual loss of ability to carry out daily activities. These symptoms are caused by structural and chemical changes in the brain such as those which occur in Alzheimer’s disease. Dementia can have many symptoms but the most common are progressive memory loss, disorientation and confusion. The most commonly diagnosed forms of dementia include:

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Alzheimer’s disease – this is the most common form of dementia, with an insidious onset and slow deterioration. It is now more important to identify Alzheimer’s disease as drug treatments are beginning to become available. Symptoms include: misplacing items, problems finding the right word in conversation, difficulties learning new information, forgetting recent events or future appointments and becoming lost in familiar places. Difficulties with visual perception, losing track of the day/date and difficulties with organisation/problem-solving may also develop. There are a number of types of Alzheimer’s disease, including a variant that particularly affects vision and a variant that particularly affects language. Vascular dementia – this is the second most common form of dementia. Vascular dementia is associated with diabetes, hypertension and arteriosclerosis. Good control of these other illnesses is important in prevention. It is caused by problems with the supply of oxygen to the brain. Symptoms include: difficulties with organisation and problem-solving, slower speed of thought, difficulties concentrating and vacant episodes. Problems with speech, mood changes, memory loss and difficulties with visual perception may also develop. Dementia with Lewy Bodies and Parkinson’s Disease Dementia – this type of dementia is thought to account for 10-15% of all cases of dementia. Symptoms include: fluctuations in mental ability, problems with alertness and attention, vacant episodes and speech difficulties. People with this condition often report hallucinations (seeing things that are not there), often of people or animals. Depression and/or anxiety are also common, along with sleep disturbance. Other difficulties may include problems with memory, movement, planning/organisation, and visual perception. Fronto-temporal dementia – this form of dementia is more commonly diagnosed in those under 65. There are a number of types of fronto-temporal dementia, including a variant that particularly affects language and a variant that particularly affects behaviour. The person may lose interest in others, behave in socially inappropriate ways and show repetitive behaviours. It is common for people with this condition to be seen as having a “changed personality”, and to experience difficulties with planning, organisation and decision-making. Alternatively, the person may have difficulties with language, including problems with understanding, slow and stuttering speech, asking the meaning of familiar words and struggle to find the right word. In the early stages, memory tends to be unaffected. Alcohol-related brain damage - damage to the brain can be caused by heavy alcohol consumption over a long period. Alcohol consumption is increasing in the UK and therefore these conditions are expected to become more common in the future. This term covers different conditions including Wernicke-Korsakoff’s syndrome and alcoholic dementia. These conditions share similarities with dementia, but if the person is well supported and alcohol-free, most people can make a full or partial recovery. Symptoms can include: memory problems, difficulties with planning/organisation and decision-making, behavioural difficulties, problems with attention, difficulties with learning new information and personality changes. Who is affected? There are 850,000 people living with dementia in the UK today (1.3 per cent), including over 700,000 people in England (1) By 2025 the number is expected to rise to over one million and by 2050 it is projected to exceed 2 million (2)

1. Alzheimer’s Society (2014), Dementia 2014: Opportunity for change 2. Lewis et al (2014), The Trajectory of Dementia in the UK – Making a Difference,

report produced by OHE for Alzheimer’s Research UK

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The suggested annual overall economic cost is £17 billion and the economic contribution of unpaid carers is £7 billion. Dementia has replaced ischaemic heart diseases as the leading cause of death in England and Wales, accounting for 11.6% of all deaths registered in 2015. People with learning disabilities, particularly those with Down's syndrome, are at increased risk of developing dementia and at high risk of developing dementia at a much earlier age, the average onset is approximately 50 years old. 4. HOW MANY PEOPLE IN DUDLEY HAVE DEMENTIA? Improving diagnosis and support for people with dementia is a key priority for Dudley CCG. Dudley diagnosis rate is 2,386 (November 2016) approximately 58.4% against the suggested prevalence. The CCG target is 67% which is the national England benchmark. The population of over 65’s is set to rise to 1: 4 of the entire population by 2030. This will add to the increasing demand for services for older people.

0

2000

4000

6000

8000

10000

12000

14000

2015 2020 2025

Num

ber a

ge 6

5+ w

ith D

emen

tia

Year

People aged 65 and over predicted to have Dementia, projected to 2025

Dudley

Birmingham

Sandwell

walsall

Wolverhampton

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In addition the Dudley 65+ population is projected to increase at a faster rate than other areas hence the number of dementia cases increases more rapidly.

Early Onset Dementia People aged 30-64 predicted to have early onset Dementia, by age and gender, projected to 2025

Dudley

2015

2020 2025

Age Group

Males

Females

Persons

Males

Females

Persons

Males

Females

Persons

30-39 1 2 3 2 2 4 2 2 4 40-49 5 5 10 4 5 9 4 4 8 50-59 24 15 39 27 17 44 26 17 43 60-64 18 11 29 18 11 29 20 13 33 Total aged 30-64

47 33 80 50 35 85 52 36 88

Source: PANSI, downloaded December 2016

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Dementia People aged 65 and over predicted to have Dementia, by age and gender, projected to 2025 in Dudley

Dementia Type

Prevalence 2015 2020 2025

Alzheimer's disease

62% 2,704 3,138 3,621

Vascular dementia

17% 741 861 993

Mixed dementia

10% 436 506 584

Lewy-body dementia

4% 174 202 234

Fronto-temporal dementia

2% 87 101 117

Parkinson's dementia

2% 87 101 117

Other 3% 131 152 175 Total 100% 4,361 5,062 5,840 Source: www.alzheimers.org.uk, downloaded December 2016

Ethnic Group Estimated number of people aged 65+ with Dementia

White 4,251 Mixed 11 Asian or Asian British 62 Black or Black British 29 Chinese or Other ethnic group

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Total 4,361

Source: Based on dementia prevalence estimates from Dementia UK, 2007 and 2012 population projections and ethnicity proportions from the 2011 Census.

5. NATIONAL CONTEXT The National Dementia Strategy (DH 2009) sets out a vision that services and society should transform their approach and attitudes to enable people with dementia and their carers to live well with dementia, no matter what the stage of their condition or where they are in the health and social care system. The National Dementia Strategy sets out clearly the case to ensure significant improvements are made to dementia services across three key areas:-

• Improved awareness; • Earlier diagnosis and intervention; • Higher quality of care.

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The Prime Ministers Challenge for Dementia Services in 2020 are outlined in by Alistair Burns, National Clinical Director for Dementia and Older People’s Mental Health 2016) and covers the effect that dementia has on the economy, hospital care, care homes and care at home. There are 850,000 people in the UK who have dementia; the average costs associated with supporting people with dementia cost £26 billion per annum. 25% of people admitted to hospital that have a diagnosis of dementia have a longer length of stay than those people without a dementia diagnosis. 70% of Care home residents have dementia. One third of people, who die, die with dementia. Dementia is the most feared illness in people over the age of 50 years. Of those people who are diagnosed with dementia 80% have another long term condition. A person with diabetes is at twice the risk of developing dementia, a person with cardiovascular disease also has an increased risk of dementia. 100,000 people with dementia have sight loss with deafness a risk factor for people with cognitive impairment. 80% of people with Parkinson’s disease will experience cognitive impairment after ten years. People with Downs syndrome are also at an increased risk of developing dementia. Since 2010 awareness of dementia is at an all time high; the use of antipsychotics (for people with dementia and challenging behaviours) has reduced by 50% and diagnosis rates for dementia are up from one third to two thirds. More than 600,000 NHS and social care staff have had dementia training. There are 1.5m dementia friends, with 150+ dementia friendly communities. A total of £60m has been invested in dementia research plus investment of £250m for a Dementia Research Institute. There have been two Prime Minister Challenges and a record number of participants in dementia related research. The Prime Ministers Challenge on Dementia 2020 includes (i) maintaining a diagnosis rate of at least two thirds against the national prevalence, (ii) Increase the numbers of people receiving a dementia diagnosis within six weeks of a GP referral and (iii) Improve the quality of post-diagnosis treatment and support for people with dementia and their carers. A key challenge within the NHS England Transformation Framework – The Well Pathway for Dementia includes Preventing Well Diagnosing

Well Supporting Well Living Well Dying Well

The risk of people developing dementia is minimised

Timely diagnosis, integrated care plan and review within first year

Access to safe high quality health and social care for people with dementia and carers

People with dementia can live normally in safe and accepting communities

People living with dementia die with dignity in the place of their choosing

“I was given information about reducing my personal risk of getting dementia”

“I was diagnosed in a timely way” “I am able to make decisions and know what to do to help myself and who else can help”

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

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

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

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Standards Standards Standards Standards Standards Prevention(1) Risk Reduction (5)

Diagnosis (1) (5) Memory Asessment (1) (2) Concerns Discussed (3) Investigations (4) Provide Information (4) Care Plan (2)

Choice (2) (3) (4) BPSD (6) (2) Liasion (2) Advocates (3) Housing (3) Hospital Treatments (4) Technology (5) Health and Social Services (5)

Integrated Services (!) (5) Supporting Carers ((2) (4) (5) Carers Respite (2) Co-ordinated Care (1) (5) Promote Independence (1) (4) Relationships (2) Leisure (3) Safe Communities (3) (5)

Palliative care and Pain (1) (2) End of Life (4) Preferred place of death(5)

References (1) NICE guidance (2) NICE Quality standards 2010 (3) NICE Quality Standards 2013 (4) Organisation for Economic Co-operation and Develpment (OECD) Dementia Pathway (5) BPSD – Behavioural and Psychological Symptoms of dementia (6) When supporting people with dementia consideration also needs to be given to carers well-being. A recent carer survey of people with dementia shows 1 in 4 carers had a long standing illness (23% 1 in 5 carers had a physical impairment or disability (21%) most carers were retired (65%) 15% were not in paid employment because of their caring responsibilities whilst 4% who were in employment did not feel supported by their employer. Dementia in hospitals during 2015/16 found that there were 320,003 emergency inpatient admissions with a record mention of dementia in England this equates to a standardised rate of 3,306 per 100,000 people aged 65 and over (source Dementia Intelligence Network, Public Health England). Recording inconsistencies are found in nearly half of inpatient admissions for people previously recorded as having dementia 49% of admissions in 2014/15 did not have a recorded diagnosis, despite previously being recorded in hospital with a diagnosis of dementia (source HSCIC Focus on dementia report 2016) 28% of all completed inpatient emergency admissions for people aged 65 and over with a recorded mention of dementia were one night or less (source Dementia Intelligence Network, Public Health England). In 2015 the national average score of acute/specialist site dementia assessments was 73% Sites were assessed on whether they were equipped to meet the needs of people with dementia against a specified range of criteria (Patient led assessments of the care environment 2015) In 2014/15 32% of all deaths for people aged 65 and over with a recorded mention of dementia occurred in hospitals, this has decreased over time (source Dementia Intelligence Network, Public Health England) Successful awareness-raising can encourage earlier help-seeking from those who have concerns about dementia, more acceptance and greater inclusion within the community and importantly a more proactive community that is aware of potential risks to developing dementia.

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Figure 1 The Well Pathway for Dementia (as featured in the 2020 Challenge on Dementia Implementation Plan)

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6. VIEWS of SERVICE USERS & CARERS Dementia Focus Group Report 20.5.16 Background Dudley CCG engagement team were asked to reach out to individuals/groups that have an interest or experience of Dementia care, in order to support the development of the Dementia strategy. This included a survey using survey monkey which was sent out via various contacts including Engagement, POP’s, and our member’s mailing list. Focus Groups Following the survey they arranged some focus groups to discuss individual’s direct experiences. They mailed out to all their contacts as well as communicating with individuals and services we felt may be interested in being part of a focus group around Dementia care plus the ‘Me, Myself and I’ group, a dementia support group made up of those with Dementia and their carers’. They used questions taken from the survey as a basis for the discussions. During the focus groups, we wanted groups and individuals to talk openly about their experiences of Dementia care in Dudley. In the ‘Me, Myself and I’ group, the carers asked to speak to us away from their loved one while they discussed their experiences. Below are some of the themes which emerged as a result of the discussions. Themes from Dementia focus groups

• GP support (varied for different individuals) • General low rating of current dementia care in Dudley • Lack of support once diagnosis • Diagnosis slow • Lack of information about accessing support • Big need for support groups for carers (and/or) more professional support for the

family • Support group having appropriate respite for the person they care for. • Other respite options not available • Understanding a crisis and what you do in this • Not the case of a one size fits all pathway - every person is different, every journey

is different • Clear that people struggle but value the amount of support from others in the same

situation • One individual allocated to your care (one social worker) not just a duty worker but

someone who knows the case and can check on you regularly – not just contact in a crisis

• Really important to get rapport and knowledge of the individual – not repeat every time

• Need to recognise the enormity of those who haven’t been diagnosed • A co-ordinator to bring the individual and the family together after diagnosis • Dementia means a patient can’t communicate their needs • Getting people out of the home and into a community setting (singing with a group)

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• If get support early on, supports keeping the loved one alive for longer • Everyone is different, dementia affects everyone differently – a lot of different

experiences • Expert is expert by experience, professionals need to take notice of what the carer

says • Social worker should have more specialist training

Summary of priorities from focus groups:-

• More direct professional help/support (to know exactly who to go when need help) • More health professionals – fully trained (from the top down) • Support groups for carers – more available and regular • Education (for carers, public, whole community)

Summary Talking to those involved with the ‘Me Myself and I’ group, it was an emotionally intense experience. The carers felt they needed a safe space to talk about their experiences away from the person they care for. The experiences were all so different and the awareness of care and the care received to date varied from person to person. Dementia does affect everyone differently and they all appeared to have very different experiences. We would hope the comments and views from the surveys and focus groups will be a key part in shaping the new dementia strategy. Case study: ‘We met with one female carer who shared her experience of caring for a loved one. Although she felt she didn’t need help or support right now, she wasn’t sure where she would be able to access this if and when she needed it. The carer wasn’t sure if or what she would be entitled to, but she shared some of the behaviours the loved one would display and how difficult this would be at times. When we asked about the support she had, she explained her family were supportive but it was very tough, and she also disclosed she had a health problem herself but hadn’t felt she had time to deal with it or see the doctor. She felt supported being around others who were on the same kind of journey and wish she was aware of this care earlier. Following our discussion we contacted the carer’s co-ordinator based in Russell’s Hall Hospital and asked her to contact the carer and explain what services and support were available to her.’ 7. AN INFORMED AND EFFECTIVE WORKFORCE Dudley Group NHS Foundation Trust provides mental health awareness training for all staff that comes into contact with people with dementia. Dementia Friends sessions is available for all staff and there are dementia champions working in various departments across the Trust. GP Education sessions: Over a 100 Dudley CCG GP’s attended a GP education programme that focused on dementia. This included presentations on diagnosis, improving support in primary care, palliative care and how the wider community services including the Dudley Dementia Gateways and Dudley Alzheimer’s Society can support patients. Well established rolling programmes across the health and social care economy of Dementia Friends Awareness; Alzheimer’s Society and Age UK delivering Dementia Friends Training to a range of partner agencies (including police and fire services) A rolling programme of

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dementia friends awareness within Dudley Council delivered by a range of staff from Adult Social Care, Library Services. Dudley and Walsall Mental Health Partnership Trust are embarking on implementing the Health Education England West Midlands Review recommendations for 3 tiers of dementia training for all trust staff. Tier 1 will involve all staff will undertake an accredited e learning programme entitled Introduction to Person-centred Dementia Care. The three modules provide awareness, education and learning around: - • Understanding Dementia; • Supporting people to live well with Dementia; • Challenging Stigma, Myths and Stereotypes.

Tier 2 will be provided to all staff that have frontline responsibilities within the service supporting people with dementia and their Carers. Staff with a professional registration will undertake a two day training programme; and support staff will attend the first day of this training also. ; they will all have completed Tier 1 training prior to attendance at this level. This level of training provides learning and skills development around:- • Theories and practice to support Person-centred Dementia Care • Evidenced based outcome focused care planning for people with Dementia and their

Carers. • Current legal frameworks supporting care provision for people with Dementia • Specialist assessment and intervention skill

Tier 3 training will be identified in annual appraisals as part of on-going professional development. This will include specialist training at higher educational level to include person-centred care and working with behavioural and psychological distress in dementia, also specialist assessment and intervention provision. This tier training will also look at providing staff with the skills and knowledge base to provide on-going support, training and supervision for staff trained at the lower tier levels. Dementia Care Mapping (DCM) is also fully implemented within Dementia Assessment Inpatients, supporting the workforce to provide quality Person Centred Dementia Care. DCM is one of the identified tier 3 training courses. DCM is also provided by the OAMH Nursing Home Nurse Practitioner for care homes. This Nurse Practitioner will also provide other tier 1 & 2 Dementia Education & Training within care homes. Staff within the Dudley MBC Dementia Gateway Service (including Dementia Advisors) are trained to be knowledgeable not only about dementia but a wider range of practical day to day issues that impact on their role. The following training is the minimum standard to ensure that all staff within the gateway service has dementia accredited training:-

• Dementia Friends Awareness; • Certificate in Dementia Awareness Level 2; • Dementia Advisors will also have Diploma in Dementia Level; • Accredited Dementia Care Mapping (Bradford University); • Awareness of Mental Capacity Act; an Introduction to Mental Health; awareness of

the Carers Act 2014 and Welfare Benefits Awareness training.

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The focus of training is to equip the staff with knowledge of the different types of dementia, the range of causes, abilities and limitations that living with dementia may have, impact on diagnosis on the person and their carer and the importance of undertaking a person-centered approach. There are links with Worcestershire University when staff are able to access workshops and there is the opportunity to use online “e learning” i.e. http://dementiatrainingcentre.co.uk; https://carers.org/article/online-training-dementia-carers; http://www.scie.org.uk/dementia/e-learning; MBC staff that has contact with people with dementia will undertake training to enable them to identify opportunities in their conversations with people with dementia and their carers and to think about addressing some of the lifestyle factors and wider determinants of health that may be negatively affecting their health and wellbeing. Please also see Section 10 ‘Supporting Carers of People with Dementia’ for addressing education and training. 8. PROMOTING HEALTH AND WELL-BEING Although age is the biggest risk factor for developing dementia there is evidence to show that around a third of cases might be attributable to potentially modifiable risk factors. People need an awareness of the risk and protective factors associated with dementia and should be empowered and supported to make healthy lifestyle choices to reduce their risk Health Matters-Midlife approaches to reduce dementia risk. PHE 2016). Awareness and education/ campaigns Whilst the public and health professionals are aware of the links between behavioural risk factors and non-communicable diseases like heart disease and diabetes, fewer people are aware that many of the same factors could impact on their risk of dementia. Therefore it is important that emerging evidence about dementia risks, protective factors and preventive actions are communicated to the public. Any campaigns around reducing the risk of dementia should be complimentary to the ‘living well with dementia messages to help to reduce stigma and increase understanding of the disease, and carefully framed to avoid the suggestion that dementia is the individuals fault (Living Well with Dementia 2009). Healthy behaviours/ lifestyle Engaging in healthy behaviours and making healthy lifestyle choices throughout life is necessary in order to reduce the risk of developing dementia amongst a host of other conditions and disabilities. Public health is committed to supporting people to make healthy choices through education and awareness, creating and promoting opportunities to engage in healthy behaviours and by enhancing the societal and environmental factors that make healthy choices easier to make. (See point 11. Developing dementia friendly communities)

• Physical activity: 21.8% of Alzheimer’s cases attributable to inactivity (PHE 2006) and therefore potentially preventable

• Being socially active helps prevent dementia by reducing loneliness stress and depression

• Education and cognitive stimulation have a protective effect with 46% lower risk of those with higher levels of mental activity than those with low. (PHE 2006)

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• NHS health checks (BP, weight, cholesterol, blood sugar) an ideal opportunity to offer lifestyle advice.

• Avoiding unhealthy behaviours (don’t smoke, reduce alcohol consumption/ drink sensibly and sleep well)

• Protect your head (head injury awareness) • Eating well and maintaining a healthy weight.

The strategy and related interventions to reduce the risk of dementia should carefully assess the potential impact on health inequalities and not widen them, including specific targeted interventions in marginalised or socially excluded communities at particularly high risk where necessary.

Public health initiatives raise awareness of the importance of a healthy lifestyle highlighting the following key dementia prevention messages:

o Keeping mentally active o Eating a healthy diet o Being physically active o Being socially active o Having regular health checks (BP, weight, cholesterol, blood sugar) o Avoiding bad habits (don’t smoke , drink sensibly and sleep well) o Protect your head (head injury awareness)

9. ENABLING EQUAL, TIMELY ACCESS TO DIAGNOSIS, SUPPORT AND TREATMENT There have been a number of initiatives in place to improve dementia diagnosis and provide on-going support including:-

• The CCG Primary Care ‘Outcomes for Health framework’ includes a requirement for GPs to identify and refer for further holistic assessment.

• A local improvement scheme designed to reward GP practices for undertaking a proactive approach to identify patients with dementia and refer on to services for additional support.

• A GP education programme on dementia focused on the importance of improving dementia care and diagnosis rates.

• A GP EMIS review of how the practices can identify people with dementia or a likelihood of dementia previously undiagnosed and thus need assessing/referring with the following conditions Parkinson’s Disease, Learning disability and Stroke

• A dementia screening tool is being developed within Dudley Group NHS FT for all over 70’s presenting in the emergency department or on the wards to be screened for dementia and a score of AMTs 4+ will trigger a referral for further assessment.

• A new MDT clinic to commence in the community consisting of specialist dementia nurse, older adult psychiatrist, psychologist, dementia advisor and geriatrician for complex dementia assessments.

• A Dudley dementia protocols was developed along with a pathway and an information leaflet.

• GPs are regularly updated with services available to support the person diagnosed and their family so they understand the benefit of a diagnosis.

• Automatic referral to Dementia Adviser to provide support.

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• Automatic referral available to CrISP 1 course by Dementia Adviser to ensure family understands how to be supportive.

• Referral to Live Well with Dementia Programme so individuals with dementia can feel they can take some control of their condition and meet other people with a recent diagnosis to get peer support.

• Dementia cafes are available across the borough to give the person with dementia and the carer regular professional and peer support in a ‘safe’ environment allowing them a social outlet when they often feel other social outlets are no longer available to them.

The Specialist Dementia Nurses GP’s can refer to the team of Dementia Nurse Specialists, who offer a thorough and complete dedicated specialist assessment to establish a diagnosis of dementia if appropriate. When a positive assessment is made, the diagnosis is sensitively communicated to the person with dementia, family members, next of kin or appointed person. With the primary aim of detailing a practical and purposeful direction together with options available; combined with the secondary aim of providing a sense of hope, and the means of living well with dementia. The diagnosis is always thoroughly explained post the assessment, supported by the provision of the latest information on the condition; together with the medical and support services available both post initial diagnosis and thereafter. The information provided is empowering to allow the person with Dementia to continue to lead the best quality of life possible and ensure that they are well supported. When a person receives an early diagnosis, they and their support network are assisted to help prevent or reduce potential carer burden and personal crisis by receiving timely and appropriate care and support. This diagnosis greatly improves user choice, giving people with dementia, and their loved or appointed ones, the opportunity to make suitable and knowledgeable decisions about future care before their mental capacity is significantly reduced. We work extremely closely with Primary Care and Dudley Borough Dementia Advisors, who will provide significant tailored care to support patients and carers post a positive diagnosis of dementia. 10. SUPPORTING CARERS OF PEOPLE WITH DEMENTIA A Road Less Rocky is a report from the Carers Trust (2013) that found that carers of people with dementia are not getting the support and advice they need. Just over 50% of carers felt they had the opportunity to talk separately about their needs and how much care they felt able to provide. 56% of Carers felt they had not received information about managing the medication of those they cared for and 52% of carers said they had not information on how to cope with incontinence. Key areas that Carers need supports with that are considered to be critical points in the carers journey are:

• When dementia is first diagnosed • When the carer takes on an “active” caring role • When the capacity of the person with dementia declines • When the carer needs emotional support and or a break from caring • When the person with dementia loses their mobility

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• When the person with dementia has other health problems • When the carer has to cope with behavioural problems • When the carer’s own circumstances change • When the person with dementia becomes incontinent • When decisions about residential care and end of life care have to be made.

Examples of where Dudley Dementia Services have begun to address some of these areas includes: Working in partnership with Alzheimer’s Society and Dudley Public Health a carers education programme has emerged that provides opportunities for carers of people with dementia to develop personal strategies to enable them to cope with the demands of living with a person with dementia. Alzheimer’s Society provide the Carers Information and Support Programme (CrISP) relating to how dementia will impact on the life of the cared for and how this will affect them as a carer. Public Health delivers the Self-Management Programme “Looking After Me” that supports carers to manage their own health and wellbeing needs and encourages the sharing of coping strategies and peer support and buddying. Both these programmes are supported by the Dudley Dementia Gateway Service who either act as host for the training to take place or provide support for the cared for person whilst their carer participates in the course. Carers who have progressed through Looking after me and CrISP have developed their own on-going peer support group that they call “Me, myself and I”. The group is self-managing and has a membership of 80+ carers who participate in information giving sessions facilitated by a range of organisations, social interaction with peers and have the opportunity to share their experience of dementia and exchange hints and tips that supports the ethos of self-management. The group is self-managing and has a membership of 80+ carers who participate in information giving sessions facilitated by a range of organisations, social interaction with peers and have the opportunity to share their experience of dementia and exchange hints and tips that supports the ethos of self-management. Further support is available via the Dementia Advisors employed by the Dudley Dementia Gateway Service who provide a named worker to all people with a diagnosis of dementia. This team of seven Dementia Advisors will support carers to access day time respite from their caring role i.e. by linking their cared for to one of two specialist dementia gateways, signposting to local voluntary, community or statutory services. Dementia Advisors refer carers on to Alzheimer’s Society Dementia Support Workers when more intense support and advice is required as more difficulties are encountered. This service is also available to carers, who self-refer and referrals are accepted through other professionals. Referral at this stage is available to the Carers Information Support Programme 2 (CrISP 2), which is similar to CrISP 1 but focuses on when needs are changing as the dementia is progressing and more external input is required. Dudley Dementia Gateways are also able to signpost carers to online training that is available via numerous learning organisations. Dudley libraries provide “books on prescription” that recommends books that may be helpful to aid carers to understand dementia. They also sign post people to dementia services within Dudley via the Dudley Community Information Directory.

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Dementia cafes are available across the borough to give the person with dementia and the carer regular professional and peer support in a ‘safe’ environment allowing them a social outlet when they often feel other social outlets are no longer available to them. Carer assessments are undertaken as per the requirements of The Care Act 2014 and are accessed via the Carers Network. 11. PREVENTING AND REPSONDING TO CRISIS This Dementia Strategy, in its entirety, very much supports prevention of crisis by being proactive and responsive in partnership working around early intervention, timely diagnosis, training and education. It supports people to live well with dementia along with their families and carers. Specialist prevention services closer to the point of crisis include the following:

• Older Adult Mental Health Nurse Practitioner for Care Homes – Identifying unmet need, early signs and symptoms around distress and behaviour, sign posting for appropriate further assessment and or support. Education and Learning role in prevention.

• Russell’s Hall Hospital Older Adult Mental Health Liaison Service – Assess and or support needs around diagnosis and on-going interventions and treatments. Will sign post for appropriate further assessment, interventions and or support. This service includes a strong education and learning role.

• Gateways – Offer post diagnostic support including accessing family care support, sign posting to appropriate services. This service provides a programme of learning, development and support for people with dementia and their families and carers directly within the Gateway.

• Older Adult Community Mental Health Team (OACMHT) – Liaise and joint work with Local Authority plus 3rd Sector Partners as well as directly with people with dementia, families and carers. As a secondary integrated mental health service the OA CMHT will receive referrals from GPs and Hospitals for the support, management of high risk and complex behaviours. OA CMHT offer Prevention and Recovery focussed approaches under the Care Programme Approach.

• Learning Disability Specialist Health Dementia Service – Links in with local GPs and social services to identify individuals with Downs Syndrome to enable proactive assessment of those aged 35 and over. GPs and local services can refer anyone with a learning disability, aged 18 or over, with concerns regarding dementia for a specialist, multi-disciplinary assessment and intervention as necessary.

Despite this preventative approach some people living with dementia will inevitably reach a point of crisis that will require urgent specialist interventions. Currently within working hours of Monday to Friday 09:00hrs to 17:00hrs the OA CMHT via their Single Point of Access Duty Desk will receive urgent same day crisis referrals. These are screened triaged and before 16:00hrs will have a professional response with a face to face visit. Outside of these hours and at weekends the response will be by the Crisis Resolution and Home Treatment Service. In 2017 it is proposed that the existing Home Treatment Service will have additional Older Adult Mental Health Specialist Professionals which will provide crisis response after 17:00hrs in week days, all weekends and Bank Holidays. OAMH Home Treatment will be 7 days a week 8:00hrs till 22:00hrs. This development will work with people with dementia in both own homes and care homes. The crisis element will also enhance advice and support for

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Russell’s Hall Hospital out of hours. Currently within hours there will remain the input from OA Psychiatric Consultant for Russell’s Hall Hospital OAMH Liaison Service. It is recognised that a minority of people living with dementia will have assessed needs and risks that cannot safely be mitigated or supported for them to remain in their own home/care home or in a general hospital bed. In such cases a specialist Dementia Assessment and Treatment beds are available at Holyrood Ward, Bushey Fields Hospital. On occasions this will be via the Mental Health Act and most commonly the Mental Capacity Act. 12. DEVELOPING DEMENTIA FRIENDLY COMMUNITIES People with dementia and at times their carers require help to cope with day to day living and this is supported by the Equality Act 2010. This places a legal duty on organisations to make reasonable adjustments in their working practices, services and buildings so as not to discriminate and applies equally to people with dementia. Developing dementia friendly communities enables people with dementia to live a good life, where they are enabled to live as independently as they are able within their chosen local community and where contact with members of their local community (whether the corner shop owner, the bank, or local restaurant or their carers workplace) is understanding and supportive to their needs. People with dementia should be able to move around their community feeling safe, have access to local facilities and maintain their social networks to feel connected and continue to feel that they belong. A dementia friendly community will have members who are aware of dementia and are able to make a difference, no matter how small, to the person with dementia with whom they interact. The physical environment will be sympathetic to people with dementia and be more accessible through signage, directional information, clear and uncluttered public areas, the use of lighting and colour contrast.. Transport, housing, inclusion, employment, retail and commercial business organisations, health and social care services all have a role to play in supporting a dementia friendly community. People with dementia and their carers require help to cope The Dudley Dementia Awareness programme covers a range of activities to raise awareness and understanding of dementia in the borough with actions across all sectors. These activities will help to reduce stigma and challenge discriminatory behaviour, improve knowledge of signs and symptoms to aid early diagnosis, promote healthy lifestyles to reduce risk and support the agenda for living well with Dementia.

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Key considerations for developing a dementia friendly community can be reflected in five domains: Figure 3

Example of how this is being supported within Dudley include Early 2016 saw the launch of the Dudley Dementia Action Alliance where connections and networking are being achieved with the voluntary sector, housing sector, care homes, social care providers, health, retail, commercial and business organisations. The emphasis is on partnership and is informed by people with dementia and their carers. The aim of this group is to expand its membership and influence the community across the Dudley Borough to make Dudley a Dementia Friendly Community Both the Dudley Dementia Gateways are dementia friendly in design (as per their accreditation from Stirling University) this covers specialist knowledge and advice, practical issues such as lighting, colour contrast signage, textures and sensory stimulation. The outcomes achieved in the Dementia Gateways are currently being used to inform changes within the Local Authorities Sheltered Housing Services where two schemes are being refurbished and will become more dementia friendly to support people who develop dementia to remain in their home for longer. Carers also benefit from the design features of the two gateways as they can see aids/adaptions/lighting in situ that can be used within their own homes. The Director of Public Health Annual Report has made recommendations that housing and transport developments delivered through the west midlands combined authority should reflect the needs of older people now and in the future by utilising the dementia design network checklist. 13. PROVIDING QUALITY END OF LIFE CARE

Dementia is not often thought of as a terminal illness and therefore key opportunities to plan for end of life with the patient may be missed. The Alzheimer’s Society highlight the fact that diminishing mental capacity means that it is important for the person living with dementia to plan for the end of their life at an early stage. It is recommended that carers be involved with

The Person With

Dementia and their

carer

The People

The Place

The Resources

The Networks

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this planning process where possible. (Living well with dementia: A National Dementia Strategy 2009).

The NICE guidance on Dementia recommends that a ‘palliative care approach’ is taken from diagnosis until death to support the quality of life of people living with dementia and to enable them to die with dignity and in the place of their choosing (NICE Guidance - Dementia: supporting people with dementia and their carers in health and social care – Updated May 2016). This approach should be holistic, with consideration for the persons physical, psychological, social and spiritual needs. Education There is an onus on all of those who are caring for people with dementia to have education around key issues in end of life care, in particular Advance Care Planning. One of the aims of the dementia service must be to ensure that those working with dementia will receive appropriate education around such subjects. Advance Care Planning after diagnosis

If diagnosis is made early enough, then some patients may still have the ability to make specific decisions for themselves regarding their future care. Health Care Professionals who see patients at, or soon after, diagnosis are ideally placed to introduce Advance Care Planning (ACP). ACP includes making an Advance Statement of wishes or preferences for future care; the opportunity to make an Advance Decisions to Refuse Treatment (ADRT); appointment of a Lasting Power of Attorney for health and / or welfare or property & finance. Such planning for the future may make a significant difference to the care of the patient once they have lost the capacity to express their preferences themselves.

Therefore, dementia services must develop a robust system to ensure that no patient diagnosed with dementia misses the opportunity to engage with ACP. The system will need to be auditable to ensure that it is achieving what it is aiming to do.

There are currently a number of initiatives at Russells Hall Hospital and in the community being either led by or supported by the Specialist Palliative Care Team (SPCT) which are aimed at trying to achieve the holistic care that patients should receive for all patients with any terminal diagnosis. Patients with dementia should expect no less than any other patient with regard their palliative and end of life care.

Below is a summary of the current key initiatives which all patients, including those with dementia should benefit from.

1. Priorities of Care for the Dying Person

Each person is individual and therefore has their own set of specific needs, so any plan of care must be equally individual and person and family centred. There is a new communication document for patients in their final days or hours, which helps guide healthcare professionals in developing such an individualised plan of care for the patient. http://www.dudleygroup.nhs.uk/services-and-wards/end-of-life-care/priorities-for-care/

2. Rapid Discharge to Home

Many people would prefer to die at home and not in hospital. Rapid Discharge supports patients whose need to return home to die becomes urgent. http://www.dudleygroup.nhs.uk/services-and-wards/end-of-life-care/rapid-discharge/

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3. Advance Care Planning (ACP)

ACP is an essential part of care for a patient living with of dementia, and must be considered whilst the patient retains the mental capacity to be able to make specific decisions about their future care but equally not to miss the window of opportunity whilst capacity to make specific decisions is maintained. http://www.dudleygroup.nhs.uk/services-and-wards/end-of-life-care/advance-care-planning

4. Bereavement Care

People closely affected by a death need to be communicated with in a sensitive way. There are different levels of support available depending on need, but the majority of support is provided by national bereavement support groups. http://www.dudleygroup.nhs.uk/services-and-wards/end-of-life-care/bereavement

5. Specialist Palliative Care in Hospital, Home, Hospice, and Care Homes

In cases where there is particular complexity which is felt to be outside the expertise of the practitioner caring for the patient, it may be appropriate to refer the patient to the Specialist Palliative Care Team. These may be patients with difficult to control symptoms, or with complex emotional, psychological or social problems. In summary 1. Access to good palliative and end of life care should be no different for a patient with

dementia compared with any other patient. Access should be equal for all. 2. The key to good care is good advance care planning which means:

- the dementia teams must be educated in Advance Care Plans (ACP) - there must be a robust and auditable way of ensuring that patients are offered

opportunity for ACP whilst they still retain capacity (i.e. near the time of diagnosis) 3. The above issues need to be proactively actioned by the dementia services (i.e. they

need to seek support in education, and a way of providing ACP (The Specialist Palliative Care Team can support this).

14. CARE HOMES Dudley CCG has commissioned telemedicine to provide a telemedicine service in 57 residential and nursing homes across Dudley plus three extra care housing schemes. Airedale telemedicine is a reactive service, with care and nursing homes using installed technology to connect via secure video link with the telemedicine hub at Airedale Hospital when a resident needs clinical input. The telemedicine hub operates 24/7 and is staffed by experienced nurses drawn from a wide range of clinical settings including within the hospital and community nursing, supported by therapists and where necessary, specialty doctors.

A new care home team has commenced in the community consisting of care home nurse practitioners and Advanced Nurse Practitioners. They will provide a reactive and proactive service 7 days a week working closely with care home staff and the wider multi-disciplinary team. A palliative and end of life care training for care home staff is to commence in March 2017. This will be delivered by the Macmillan Specialist Care at Home Team and will be a free

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course offered to all staff across every nursing and residential care home across Dudley. The training will include caring for people with advanced dementia requiring palliative and end of life care. Additional training for care home staff is planned for 2017 on medicines management, nutrition and hydration. 15. CONCLUSION The vision, themes, outcome statements and focus on areas for improving services are captured on a plan on a page for the Dementia Strategy (appendix 1). The strategy will be shared and presented across the health economy including to the Dudley MBC Health Overview Scrutiny Committee and the Dudley Health and Well-Being Board. A wider consultation will also commence in the spring of 2017 and include engaging with the people that contributed in the focus groups, Alzheimer’s Society and Age UK Dudley. Following the consultation the members of the strategy group will review any feedback and develop an action plan to address the areas for development. The group will continue to meet on a bi-monthly basis. This will include named leadership and responsibility for ensuring the delivery of the outcomes for:-

• Enabling equal, timely access to diagnosis, support and treatment • Developing dementia friendly communities • Supporting carers of people with dementia • Preventing and responding to crisis • Providing quality end of life care

There has been highly productive partnership working over the last few years on dementia. The Dudley dementia strategy group with its wide membership has been central to discussing and achieving the changes and particularly the input from service users and carers. However, there is no time for complacency and further improvements particularly in ensuring more people access services will be of the highest priority for commissioners and health/social care professionals.

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APPENDIX 1