Dementia Sharing & Learning Workshop. Tuesday 24 March 2014 The Durham Centre, Belmont Industrial Estate

Transcription

1 Dementia Sharing & Learning Workshop Tuesday 24 March 2014 The Durham Centre, Belmont Industrial Estate

2 Welcome & Introduction Suzanne Thompson Network Manager

3 Aims of today Joint sharing and learning event with North East Dementia Alliance: What is a good diagnosis and how do we do it in a timely way What support do people need after a diagnosis and how do we coordinate it

4 The Dementia Dilemma: Referral, assessment and talking to patients Dr Louise Allan Clinical Senior Lecturer in Geriatric Medicine Institute of Neuroscience Newcastle University

5 Why is it important to diagnose dementia? Principles of autonomy Most people express a desire to know To understand one s situation and plan for the future To avail oneself of potential benefits of treatment, care and support To avoid potential harms of lack of treatment, care and support

6 Early diagnosis?

7 Key Findings Dementia diagnosis provides access to a pathway of evidencebased treatment, care, and support across the disease course. The impact of a dementia diagnosis depends greatly upon how it is made and imparted (need to be well prepared). Earlier diagnosis allows people with dementia to plan ahead Families can receive timely practical information, advice and support. Diagnosis gives access to available drug and non-drug therapies that may improve their cognition They can participate in research. Most people with early stage dementia would wish to be told of their diagnosis. Early therapeutic interventions can be effective in improving cognitive function, treating depression, improving caregiver mood, and delaying institutionalisation. Some of these interventions may be more effective when started earlier in the disease course

8 What is a timely diagnosis? A timely diagnosis is when the patient wants it or the family need it But does the patient need to know what dementia is before deciding whether they want to know? Can they gain any of the benefits of lifestyle change and advance planning without knowing their future?

9 The right to know What is it the person wishes to know? Will the doctor know? How certain will the doctor be?

10 What is dementia? A collection of symptoms, including a decline in memory, reasoning and communication skills With a gradual loss of skills needed to carry out daily activities. Caused by structural and chemical changes in the brain as a result of physical diseases such as Alzheimer s disease. Dementia is a progressive condition.

11 What definitions of dementia do we Criteria ICD 9 ICD 10 Cognitive/ behavioural Domains Memory and executive have? Functional decline 9 work/social 10- ADLs Duration Progression >6 months Optional (ICD10) CAMDEX AGECAT Memory and one other Work/ ADLs >6 months Yes DSM III, DSM IIIR DSM IV Memory and one other Work/social/ relationships No DSM V: major neurocognitive disorder) Single or multiple domain Domain specific No

12 How certain is a diagnosis of dementia? Estimation of a significant functional change is subjective and varies between and within clinicians Objective changes in cognitive domains depend on premorbid status and number of SD deemed to be abnormal Duration criteria vary and may be insufficient to allow recovery from delirium Progression is difficult to establish, particularly in non-ad dementias and is most uncertain earliest in the disease

13 Erkinjuntti T et al The effect of different diagnostic criteria on the prevalence of dementia. New England Journal of Medicine. 1997;337(23):

14 So which definition is used for your CCG s denominator?

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16 So if severe disease is more certain, how many have severe disease?

17 Pause for thought Which definition of dementia does your local memory service use? How long do they wait after a delirium or drug change? Do they discharge patients with mild dementia? Does anyone review the diagnosis after that?

18 Thinking about cognitive trajectories

19 What do we know about cognitive trajectories?

20 What do the randomised controlled Alzheimer s disease trials tell us?

21 Nordic trial data analysed using the responder definition from NICE 2001 (TA 19) Date of Preparation: Feb 2012 UK/EBI/1202/0302

22 Stroke cohort: Longitudinal cognition by baseline cognitive impairment

23 Individual trajectories

24 Is there any evidence of regression?

25 What are the effects of delirium?

26 Dying with dementia, delirium and terminal delirium

27 Figure 1. Dementia or Cognitive Impairment by Age at Death with 95% CIs Brayne C, Gao L, Dewey M, Matthews FE, Medical Research Council Cognitive Function and Ageing Study Investigators (2006) Dementia before Death in Ageing Societies The Promise of Prevention and the Reality. PLoS Med 3(10): e397. doi: /journal.pmed

28 Thinking about cognitive trajectories

29 Pause for thought Does your patient have Dementia Stable impairment Unresolved or recurrent delirium Terminal delirium? Would a change in diagnosis change the patient s needs? The patient s thoughts about themselves? Other people s views of the patient Their ability to access the services they need?

30 Mild cognitive impairment an isolated cognitive impairment (or impairments) identified as abnormal by a statistical rule (usually 1½ standard deviations below that expected on the basis of age and education) and representing a decline from previous level of function

31 What do you need to know about MCI? There are multiple definitions! They are associated with different levels of future risk of dementia The level of objective change required varies Only some require functional change Any patient can remain stable or improve

32 Prevalence of MCI

33 Progression rates

34 How shall I talk to patients and families about dementia? Themselves Their older family members Their children

35 The path to dementia Risk factors, resilience and prevention Early and uncertain disease (MCI vs early dementia) Established dementia End of life

36 Lifestyle and advance planning It s never too early It s never too late

37 Drugs, drugs, drugs Think brain Get them off anticholinergics- it s never too soon Anticholinergic burden scale Continence, dizziness, nausea, tricyclics Opioids Benzodiazepines Gabapentin

38 Case finding: Should I ask patients about their memory? Is this screening by asking about subjective memory complaints?

39 Meta-analysis for dementia

40 Changes in instrumental activities of daily living- physical and cognitive needs Shopping Food Preparation Medicine Laundry Finance Travelling Housework Telephone use

41 When the patients and families come to you Always take this seriously Physical status and Medication Supportive care Lifestyle Advance planning Use the word Dementia Explain uncertainty Explain assessment

42 Explain uncertainty Do a screening tool to help you decide how severe the problem is The milder the problem the greater the uncertainty Potential diagnoses Advantages of knowing Disadvantages of knowing Modest but significant benefits of drugs

43 Advantages of knowing Explanation for symptoms Treatment of cognitive symptoms Treatment of non cognitive symptoms Planning seems less theoretical Some support services require a diagnosis May provide a spur to lifestyle change

44 Disadvantages of knowing Distress Cannot unknow Diagnosis could be wrong Driving Insurance The attitudes of others

45 Explaining assessment Assessment includes possibility of dementia Taking a history Importance of the informant Importance of drugs and glasses! Likely neuroimaging but not essential Time as a diagnostic tool

46 Pause for thought Needs based commissioning Diagnosis based commissioning How will those with MCI, major single domain impairment, delirium, post delirium impairment and terminal delirium fit into your commissioning plans?

47 Questions?

48 Dr Lynne Corner Views of people with dementia and their carers Chair of NE Dementia Alliance NE Dementia Innovation Hub Director of Engagement, Newcastle University

49 The North East Dementia Alliance Close and effective partnership of people with dementia, carers, health, social care, voluntary and private sector organisations Huge benefits to work in close connection to Mental Health, dementia and neurological conditions network Drive improvements in health, care and support of people with dementia and support and influence change

50 NE Dementia Innovation Hub: Active partnership and collaboration NE Dementia Alliance established 2008 Harnessing the knowledge and experience of people with dementia and their families Flourishing membership and strong input from health and social care and a wide range of private, community and statutory partners Partners leading the response to the challenge of dementia in the North East Outcome and impact focused

51 National Dementia Strategy Key Early diagnosis Improved hospital care Improved care in care homes Objectives Reducing the inappropriate prescribing of anti psychotic medication

52 Raising awareness and understanding O1 public information campaign Early diagnosis and support Living well with dementia O2 memory services O3 information for people with dementia and carers O4 continuity of support for people with dementia and carers O5 peer support for people with dementia and carers O6 improved community personal support O7 implementing carer s strategy for people with dementia O8 improved care in general hospitals O9 improved intermediate care for dementia O10 housing including telecare O11 improved care home care O12 improved EOLC making the change O13 workforce competencies, development and training O14 joint local commissioning strategy and world class commissioning O15 performance monitoring and evaluation including inspection O16 research

53 Current and future priorities: Early intervention & diagnosis Improved care at home Carers Improved quality of care for people in hospital Living well with dementia in care homes An informed & effective workforce Commissioning strategies for dementia Dementia Friendly Communities Working carers Integrated commissioning Assistive technology to support caring role

54 A real and lasting difference 45 projects over last 12 months Leadership and engagement course for people with dementia; Value-based recruitment a skilled workforce Housing and assistive technology People with dementia in hospitals Environmental improvements

55 Minority Communities Dementia in Minority Communities - August 2012 Support & Care For People Living with Dementia from Minority Communities February 2013 Training DVD

56 Dementia affects huge numbers of people 816,000 people with dementia in the UK 21 million of the UK population have a close friend or family member with dementia. Costs approximately 26 billion a year ( 4bn NHS, 10bn social care, 12bn unpaid carers) 56 Sources: State of the Nation DH 2013, Dementia UK: Second Edition, 2014

57 Dementia is leading cause of death and disability Dementia is a leading and rapidly rising cause of premature mortality (currently 10 th ) It s the 3 rd biggest cause of over 70s disability DEMENTIA 25% of hospital beds are thought to be occupied by people with dementia Low diagnosis rate and levels of support Significant health inequalities eg challenging cultural norms Ref: Global Burden of Disease Study 57

58 Diagnosis of dementia On average, in England, 53% of people with dementia receive a diagnosis There is significant variation across the country and in the regions NHS England have a national ambition that two thirds of people with dementia receive a diagnosis and post diagnostic support Dementia: state of the nation report ementia-care-and-support

59 Dementia prevalence calculator: practice view Every GP practice has direct access to the Dementia Prevalence Calculator on NHS England s Primary Care Website. The information is completely transparent so every GP practice and CCG can see every other GP practice and CCG.

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61 Views of people living with dementia: and families: experiences of assessment I was diagnosed in a timely way..? Some frustration expressed at how long it takes to get a diagnosis. Examples of inconsistent approaches across GP practices. Patient concerns sometimes dismissed as part of ageing process. Belief that this attitude contributes to delay in obtaining diagnosis. Patients have usually already have considered but dismissed memory problems to be part of ageing and have been sufficiently concerned to seek medical advice. Inconsistencies of approach Delay between expressing concern and being sent for assessment Overwhelmed with information grief of diagnosis Help to navigate information and guidance Low level support

62 Discussion points Can GPs detect and diagnose dementia? Can other sectors undertake MMSE s? What models of practice can best improve the links between primary and secondary care? How can sectors join up for seamless provision? e.g. data sharing Can GPs initiate anti Alzheimer s disease drug treatment (eg donepezil)? Do you need a scan to diagnose dementia? What about people with suspected dementia in care homes?

63 Discussion Points What are the risks of over diagnosis? How can practices help navigate local services? Does the rate of diagnosis not just reflect local memory services? What happens about the diagnosis rate after next year?

64 Dementia i statements I know what I can do to help myself and who else can help me Those around me are well supported and are in good health I get the treatment and support, which are best for my dementia, and my life I feel included as part of society I understand so I make good decisions and provide for future decision making I am treated with dignity and respect I am confident my end of life wishes will be respected. I can expect a good death. I know how to participate in research

65 Refreshment Break

66 Dementia Post Diagnosis Support, Strategic Care Development Dr Johannes Dalhuijsen Clinical Lead, NESCN

67 Dementia Care after diagnosis: an example. [The doctor] said You ve got vascular dementia. Come back and see me in six months. Then she sent me on my way. Henry Rankin, age 58

68 Dementia Care after diagnosis: an example. Why me? What does it mean? What s going to happen? What can I do? What about my family? Where can they get help? What kind of care do I need? Who can I speak to?

69 Dementia Care after diagnosis: the kind of things that go wrong interactive

70 Dementia Post Diagnosis Care: what is needed? Patient and carer centered PDS Holistic, proactive, anticipatory care Integration and Coordination Preparing for better care/ Joint working

71 Patient and Carer Centered PDS Practical & emotional Patients and Carers (and communities)

72 PDS: Five Pillars Model

73 Holistic, proactive, anticipatory care: economic arguments Improving choice and control enabled people to stay well and maintain their independence for longer Providing practical and emotional support to carers delayed admissions to residential or institutional care Effective healthcare averts attendances at Accident and Emergency departments and emergency hospital admissions which often lead to step changes in dependency.

74 Integration: Five Sources of Care Community Informal care 3 rd Sector Patient Healthcare Social care

75 Integration and Coordination of care Include all five sources Joint vision, joint ownership. Agree desired outcomes Cooperate Share information Coordinate Improve the interfaces Evaluate

76 Preparing for better care Population focus/ Public health Joint strategies. Strategic Alliances Raise Awareness Plan housing, community facilities, IT Use commissioning levers Align with other initiative (Better Care Fund) Share information

77 Better Care Fund, aimed at: Improvements to unplanned emergency admissions A reduction in delayed transfers of care from hospital to home A reduction in unplanned readmissions Improved performance from reenablement services A fall in admissions to residential and nursing home care Reducing frailty and improving resilience Improving quality of life and personal choices Achieving positive feedback from service users and carers on their experiences of the care system

78 Dementia Post Diagnosis Examples of good practice Dementia Friends / Champions Housing Alternative Pathways Dementia Village Healthwatch Programme Dementia Link workers NTW Scaffolding Enhanced Care in care homes Family Group Conferencing Dementia Cafes Carers Assessments Hospital Dementia Link Workers 'Dementia Voice Nurse End of Life Service'..

79 How to get there, from here? Challenges, vision, steps interactive

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81 What outcomes are important for people living with dementia and carers? Dr Lynne Corner Director of Engagement, Newcastle University

82 40% lost friends 48% said they were a burden to family 19% said they were a burden to friends 61% felt lonely 77% felt anxious or depressed Two thirds of people say they were living well with dementia

83 What are important outcomes to patients and carers? Who are we commissioning for? Different outcomes for patients? carers? Caring experience context specific.. and dynamic

84 Effective support for carers The quality of post diagnostic is key eg Cognitive Stimulation Therapy, Life story work RCGP Roadmap Evaluation of dementia advisers published in 2013 The Dementia Guide

85 From professional perspective: CCG report, GP booklet, Prevalence (coding, calculator, update) Increase awareness Encourage identification Enable recording Bridging the gap Dementia Friends Awareness Campaign Commissioning for Quality and Innovation (CQUIN) Directed Enhanced Service (DES) Dementia Friendly Hospitals CCG Engagement visits, WebExs Offer of Support SCNs, Area Teams: AHSNs; CQUIN, DES Case Studies: best practice, economics Dementia Advisors Dementia Portal Nice Guidance Clarification re: scans Coding Guidance Cognitive Tool Kit Intelligence Network: data Intelligence from CCGs CSUs, SCNs Assurance Process DES, CQUIN refresh RCGP Roadmap Memory Clinic waiting times Prevalence Update Engagement with Royal Colleges & BMA Care Homes

86 Clinical Commissioning Group visits Three things Clinical Leadership Links with social care Taking charge

87 The Memory Services National Accreditation Service (MSNAP) recommends a standard of 6 weeks from referral to assessment The RCPsych. survey (N=178) found time from referral to assessment was from 1 week to 25 weeks with (43 services exceed six weeks). How does this relate to local diagnosis rate? Four fold increase in activity in two years; half of people seen in early stages 75% of clinics asking about research Tour of clinics has found: Expanded roles Developing services Post diagnostic support Working with primary care Housekeeping Anne Wilkinson & Susie Peachey

88 Dementia Friends Campaign PHE are supporting the Alzheimer s Society campaign. 1 million people to become Dementia Friends by next year Pledges by corporate partners, NGOs and public sector organisations to deliver additional Friends this year. Alongside support for the Dementia Friendly Communities programme 88

89 What are important outcomes to patients and carers? Who are we commissioning for? Working carers, private payers, Multiple caring roles Anxiety and depression management Older carers health issues Respite for long term resilience Restricted sitting services Flexibility choice and options Cross-sector commissioning and partnership

90 What are important outcomes to patients and carers? Geographical flexibility local? Social interaction Sharing experience Respite and befriending services Detail important to carers

91 PM Challenge/ DAA outcomes.. 1. I have personal choice and control or influence over decisions about me I have control over my life and support to do the things that matter to me. I have received an early diagnosis which was sensitively communicated. I have access to adequate resources (private and public) that enable me to choose where and how I live. I can make decisions now about the care I want in my later life. I will die free from pain, fear and with dignity, cared for by people who are trained and supported in high quality palliative care.

92 2. I know that services are designed around me and my needs I feel supported and understood by my GP and get a physical checkup regularly without asking for it. There are a range of services that support me with any aspect of daily living and enable me to stay at home and in my community, enjoying the best quality of life for as long as possible. I am treated with dignity and respect whenever I need support from services. I only go into hospital when I need to and when I get there staff understand how I can receive the best treatment so that I can leave as soon as possible. Care home staff understand a lot about me and my disability and know what helps me cope and enjoy the best quality of life every day. My carer can access respite care if and when they want it, along with other services that can help support them in their role.

93 3. I have support that helps me live my life I can choose what support suits me best, so that I don't feel a burden. I can access a wide range of options and opportunities for support that suits me and my needs. I know how to get this support and I am confident it will help me. I have information and support and I can have fun with a network of others, including people in a similar position to me. My carer also has their own support network that suits their own needs

94 4. I have the knowledge and know-how to get what I need It's not a problem getting information and advice, including information about the range of benefits I can access to help me afford and cope with living at home. I know where I can get the information I need when I need it, and I can digest and re-digest it in a way that suits me. I have enough information and advice to make decisions about managing, now and in the future, as my dementia progresses. My carer has access to further information relevant to them, and understands which benefits they are also entitled to.

95 5. I live in an enabling and supportive environment where I feel valued and understood I had a diagnosis very early on and, if I work, an understanding employer which means I can still work and stay connected to people in my life. I am making a contribution which makes me feel valued and valuable. My neighbours, friends, family and GP keep in touch and are pleased to see me. I am listened to and have my views considered, from the point I was first worried about my memory. The importance of helping me to sustain relationships with others is well recognised. If I develop behaviour that challenges others, people will take time to understand why I am acting in this way and help me to try to avoid it. My carer's role is respected and supported. They also feel valued and valuable, and neither of us feel alone

96 6. I have a sense of belonging and of being a valued part of family, community and civic life I feel safe and supported in my home and in my community, which includes shops and pubs, sporting and cultural opportunities. Neither I nor my family feel ashamed or discriminated against because I have dementia. People with whom we come into contact are helpful and supportive. My carer and I continue to have the opportunity to develop new interests and new social networks. It is easy for me to continue to live in my own home and I and my carer will both have the support needed for me to do this.

97 7. I know there is research going on which delivers a better life for me now and hope for the future I regularly read and hear about new developments in research. I am confident that there is an increasing investment in dementia research in the UK. I understand the growing evidence about prevention and risk reduction of dementia. As a person living with dementia, I am asked if I want to take part in suitable clinical trials or participate in research in other ways. I believe that research is key to improving the care I'm receiving now. I believe that more research will mean that my children and I can look forward to a range of treatments when I need it and there will be more treatments available for their generation. I know that with a diagnosis of dementia comes support to live well through assistive technologies as well as more traditional

98 Dementia Roadmap Helping primary care to support people with dementia

99 A collaborative development

100 Rationale There is a wealth of information, guidance, tools and resources which can optimise assessment treatment and care BUT this is difficult to access to support effective diagnosis and treatment from the surgery desktop.

101 About the Dementia Roadmap The Dementia Roadmap provides high quality information about the dementia journey alongside local information about services, support groups and care pathways to assist primary care staff to more effectively support people with dementia, their families and carers.

102 Designed by and for primary care Designed by GPs and other primary care staff The main audience is staff working in primary care, including GPs, nurses, dementia navigators and practice managers To improve support at the time of diagnosis as well as throughout the dementia journey

103 Both general and unique Each local Roadmap provides general information about the dementia journey alongside local information about services, support groups and care pathways unique to that particular locality.

104 Key features A coherent structure reflecting the dementia journey Signposting people to existing high quality sources of information Accessible and easy to use Can be customised with local information Available on mobile, tablet and desktop devices

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109 Dementia i statements I know what I can do to help myself and who else can help me Those around me are well supported and are in good health I get the treatment and support, which are best for my dementia, and my life I feel included as part of society I understand so I make good decisions and provide for future decision making I am treated with dignity and respect I am confident my end of life wishes will be respected. I can expect a good death. I know how to participate in research

110 Feedback & Next Steps

111 Thank you & Goodbye