Dementia. services guide

Transcription

1 Dementia services guide

2 Contents Foreword 3 1 Introduction What is dementia? Who is affected and how? Prevalence of dementia in the UK Prevalence of dementia in London Increasing prevalence and future need Spending on dementia Strategic context The benefits of change Key issues for London 20 2 Integrated care pathway 21 Introduction Patient experience Construction of the care pathway Detailed description of the care pathway Workforce competencies Outcomes 44 3 General hospital care pathway 45 Introduction Policy context Construction of the general hospital care pathway Action descriptions General hospitals workforce competencies Outcomes Conclusions and recommendations for implementation 67 4 Memory services 69 Introduction National and regional information Specifying a memory service Example commissioning specification for a memory service 75 List of appendices 89 2 Healthcare for London

3 Foreword Dementia can be an overwhelming and difficult diagnosis to hear, both for the person with dementia and for their carer. Dementia is surprisingly common, and given our ageing population and projections that the number of people with the condition will double in the next 30 years; providing dementia services to suit local communities will be a challenge. In London we are determined to respond to that challenge. Nationally there have been some critical reports about the services available for people with dementia. Professor Lord Darzi s Healthcare for London A Framework for Action (2007) and the National Audit Office report Improving services and support for people with dementia (2007) highlighted that services were not provided consistently well across London. The National Dementia Strategy was published in 2009 by the Department of Health and provides a framework of 17 objectives to help organisations develop dementia services. The strategy focuses on three key themes: improved awareness, early diagnosis and intervention, and high quality care and support. Healthcare for London and its partners within the mental health project, recognise that people with dementia and their carers need improved access to early identification and diagnosis, better treatment in both primary and secondary care and good quality information. Providing dementia services for these components will significantly help to empower and support people with dementia and their carers so that they may make informed decisions as their condition progresses. We welcome the Dementia services guide, which will assist London s healthcare, social care and third sector organisations to commission services that will improve health outcomes and offer comprehensive support for people with dementia and their carers. We would like to thank those individuals and organisations that helped us develop the Dementia services guide through our consultation with primary and secondary healthcare professionals, social care experts and statutory, independent and third sector partners. Joan Mager Chief Executive, NHS Richmond, Healthcare for London Mental Health Senior Responsible Officer and Project Board Chair Jenny Goodall Director of Community and Children s Services, City of London Corporation and Healthcare for London Dementia Task Group Chair Dementia services guide 3

4 4 Healthcare for London

5 Introduction Introduction 1 Dementia services guide 5

6 Introduction Introduction In July 2007, Professor Lord Darzi set out ambitious plans for improving the health and healthcare of Londoners in the report Healthcare for London: A Framework for Action. The report recognised that although mental healthcare provision is particularly strong in some areas of the capital, the service is not provided consistently well across London. The Healthcare for London strategy was established by the capital s 31 primary care trusts (PCTs) to change healthcare services and has been working to transform the way people with mental health conditions receive care. London has a high prevalence of people with mental health conditions compared with the national average, and levels are particularly high in boroughs with high levels of deprivation. The number of people with dementia will increase as the population ages. Forecasts show a large increase in the numbers of people with dementia in London in future years. According to the Alzheimer s Society s report, Dementia UK, there will be a 14% increase in the numbers of people with dementia in London between now and 2021 but the effect of population change varies by PCT. PCT level projections from Dementia UK are shown in the full needs assessment (see appendix 1). Mental illness is estimated to cost the capital 5 billion a year, taking into account the cost of services, lost earnings and benefits 1. Ensuring that services for people with dementia and their carers are improved is a growing challenge and is becoming increasingly costly for the health service as a whole. This guide aims to advise London commissioners and clinicians with local authority partners how to follow the integrated care pathway for dementia developed by Healthcare for London in order to: help all London commissioners plan services in partnership along with local authority colleagues in social care provide a quality check against which they can benchmark services provide performance outcomes to help them review services. 1 The London Assembly 6 Healthcare for London

7 1.1 What is dementia? The term dementia is used to describe 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 as a result of physical diseases such as Alzheimer s disease. Introduction There are a number of different types of dementia; with the most common being Alzheimer s which accounts for about 60% of cases 2. Alzheimer s disease changes the chemistry and structure of the brain, causing brain cells to die. Over time the person will become increasingly dependent on others for help. They are likely to experience severe memory loss and become increasingly frail. They may have difficulty with eating, swallowing, continence and experience loss of communication skills such as speech. Vascular dementia is caused by strokes or small vessel disease which affects the supply of oxygen to the brain. Vascular dementia affects people in different ways. It can cause communication problems, stroke-like symptoms and acute confusion. This form of dementia progresses in a similar way to Alzheimer s disease but progression is often stepped rather than gradual. Frontotemporal dementia is a rare form of dementia affecting the front of the brain. It includes Pick s disease and most commonly affects people under 65. In the early stages the memory may remain intact while the person s behaviours and personality change. Dementia with Lewy bodies is caused by tiny spherical protein deposits that develop inside nerve cells in the brain. These interrupt the brain s normal functioning, affecting the person s memory, concentration and language skills. This type of dementia has symptoms similar to those of Parkinson s disease such as tremors and slowness of movement. Using this guide Readers are asked to note, where reference is made to 'people with dementia and their carers' please read this as 'people with dementia and their informal or formal carers'. The concept of personalisation underpins this Dementia services guide. This means that people with dementia and their carers will be empowered to shape their own lives and the services they receive. 2 Gupta et al. Rare and unusual dementias, Adv Psychiatric Treatment, 2009; 15: Dementia services guide 7

8 Introduction 1.2 Who is affected and how? Dementia can affect anyone regardless of gender, ethnicity, socio-economic situation and residential status. Nearly two-thirds of people with the disorder live in the community, while the other third reside in a residential home. A small number of people with dementia are from black and minority ethnic (BME) groups. This is due to the current younger age profile in London s BME communities. As this population ages, with a higher prevalence of physical conditions which may contribute to dementia, the rate of dementia is expected to increase. A detailed analysis of the London population segments affected by dementia is available in appendix 1. This highlights that most cases of dementia are late-onset and therefore affect people aged 65 and over. Approximately one in 40 cases is early-onset dementia and occurs before the age of 65. Many factors, including age, genetic background, medical history and lifestyle can combine to lead to the onset of the disorder. Key points to emerge from recent studies and consultations with people with dementia and their carers showed: Dementia is poorly understood, it remains a stigmatised condition and those affected often experience social exclusion and discrimination. Seeking help is frustrating; access to services typically includes contact with the NHS, local councils and the third sector; sometimes being referred elsewhere and often duplicating activities. Current services do not meet the needs of people with dementia. Services are fragmented and lack robust integration and strong partnership working. There are gaps in provision and the quality of specialist services remains inconsistent. Reliability and continuity of services are compromised because many staff lack the requisite knowledge and skills to respond appropriately to those affected. Most health and social care services are not delivering the outcomes that are important to people with dementia: early diagnosis and treatment, easily accessible services, information and advice and high quality support. 8 Healthcare for London

9 1.3 Prevalence of dementia in the UK According to Living Well with Dementia: A National Dementia Strategy, dementia is one of the most severe and devastating disorders faced by the NHS. Latest figures for the UK show: There are approximately 700,000 people with dementia. Within 30 years, the number of people with dementia is expected to double to 1.4 million. Dementia is predominantly a disorder of later life, but there are at least 15,000 people under the age of 65 who have the illness. The level of UK diagnosis and treatment of people with dementia is generally low, with a two-fold variation in population prevalence between the highest and lowest PCTs in London. International comparisons suggest that the UK is in the bottom third of European performance in terms of diagnosis and treatment, with less than half the activity of France, Sweden, Ireland and Spain. Introduction 1.4 Prevalence of dementia in London Around 64,600 people have dementia in London including 1,560 people with early-onset and 63,019 people with late-onset dementia. Altogether the population with dementia makes up 1.4% of the total London population aged 30 years and over (see figure 1). Figure 1: Range of people with dementia across London PCTs 3 Relative position Highest Average Lowest PCT Bromley Bexley Havering London Haringey Lambeth Proportion of people aged 30+ with dementia, % 1.9% 1.9% 1.4% 1.0% 1.0% Figures 2 and 3 illustrate the rates for early and late-onset dementia in London PCTs and the range of overall numbers affected. In general the outer London boroughs have a higher prevalence than those in inner London but this pattern is not uniform and there will also be variations within each borough. Figure 4 indicates the estimated total numbers of people with dementia by PCT. 3 Source: Based on Dementia UK prevalence rates applied to GLA populations Dementia services guide 9

10 Figure 2: Estimated prevalence of early-onset dementia by PCT, 2007 Introduction Early-onset dementia (30-64) Rate per 100, to 53.6 (6) 46.2 to 47.7 (6) 43 to 46.2 (4) 37.8 to 43 (7) 33 to 37.8 (9) Figure 3: Estimated prevalence of late-onset dementia by PCT, 2007 Late-onset dementia (over 65s) Rate per 1, to 80 (7) 73 to 76.5 (5) 72 to 73 (6) 70.6 to 72 (5) 63.9 to 70.6 (8) 10 Healthcare for London

11 Figure 4: Estimated total numbers of people with dementia by PCT, 2007 Introduction Early and late-onset dementia Numbers by PCT 2,780 to 3,810 (5) 2,290 to 2,760 (7) 1,770 to 2,290 (5) 1,470 to 1,770 (7) 1,170 to 1,470 (7) Figure 5 shows the numbers of new cases of dementia that occur each year. It also highlights a sharp rise with age. Figure 5: Number of people with mild, moderate and severe late-onset dementia in London, Level of severity Mild Moderate Severe Total Number in London, ,528 20,349 8,143 63,020 Proportion of total 54.8% 32.3% 12.9% 100.0% 4 Source: Dementia UK and GLA populations 2007 Dementia services guide 11

12 Introduction 1.5 Increasing prevalence and future need Forecasts show a large increase in the number of people with dementia in London; however the effects of population change differ by PCT. The average annual increase in the number of people with the disease in London varies from 0.8% to 1.3% according to the projections used (see appendix 1). Specific attention will need to be paid to relatively high risk groups when developing local services. This includes ensuring that early identification and intervention services are equitably provided and meet the needs of different ethnic groups, homeless people, those with learning disabilities, people with HIV, travellers, substance misusers, prisoners, people who live alone, people in socially deprived areas and others who may have particular needs. It is also important that commissioning plans incorporate a sensitivity analysis by using more than one set of projections. Figure 6: Projected increase in the number of people with dementia in London by gender and age group, 2005 to Gender Male Female Persons Age group Total Total Total People with dementia ,912 15,009 20, ,981 32,301 36,939 1,512 8,893 47,310 57,715 People with dementia ,134 5,529 20,241 26, ,691 33,541 39,033 1,935 10,220 53,782 65,937 Percentage increase 33% 13% 35% 29% 22% 18% 4% 6% 28% 15% 14% 14% The above figures suggest that: There will be a 14% increase in the number of people with dementia in London over the 16 year period. The proportion of people with dementia who are female will reduce from 64% in 2005 to 59% in The proportion of people with dementia who are aged 75 and over will remain at 82%. The largest increase will be in males aged 75 and over (35% more). 5 Source: Dementia UK 12 Healthcare for London

13 Figure 7: Projected increases in the number of people with dementia by PCT, 2005 to Introduction Percentage change 2005 to % to 54% (7) 14% to 22% (8) 0% to 14% (7) -7% to 0% (9) Different population projections have been used in this guide and have produced different prevalence rates. The Dementia UK projections were quoted in the Department of Health s National Dementia Strategy and were calculated by applying census prevalence rates to Office of National Statistics (ONS) population projections. However the use of other population projections produces different results and two alternative scenarios should also be considered: Projections of dementia by Projecting Older People Population Information (POPPI) using more recent ONS population projections than those used in Dementia UK. Projections of dementia calculated by Healthcare for London for the needs assessment using GLA population projections. The variances in using different population projections can be found in appendix 1. 6 Source: Dementia UK Dementia services guide 13

14 Introduction 1.6 Spending on dementia Dementia accounts for the biggest proportion of mental health expenditure in the UK. Currently, access to early identification, assessment and treatment is inequitable with some people in the under 65 age group struggling to access services. Early intervention will delay the speed of decline in a person with dementia and reduce the time patients spend in institutional settings. The level of service capacity required to improve outcomes is unknown, as service commission or provision of unmet need across London has not yet been mapped. The economic costs of an illness can be calculated in different ways and can be hard to describe accurately. For example costs can be direct or indirect, can be examined from different perspectives (e.g. the NHS, the public sector or society as a whole), and can cover different time periods. The cost of dementia is substantial and it has been reported that the direct costs of Alzheimer s disease alone exceed the total cost of stroke, cancer and heart disease 7. One study quoted by the National Institute for Health and Clinical Excellence (NICE) calculated the direct costs of Alzheimer s disease alone in the UK to be between 7.1 billion and 14.9 billion in The Dementia UK report calculated a total cost of billion per annum for the UK in 2005/06. This equated to an average cost per person with dementia of 25,472 per annum. This only includes the cost of service provision and does not include the wider economic costs associated with issues such as lost employment and taxation and welfare benefits. Costs of providing services increase with the progression of the disease. Direct costs are higher for people with severe dementia (figure 8). Figure 8: Annual costs of services used by people with late-onset dementia (per person), 2005/06 9 Service NHS Social services Informal care Accommodation Total cost Mild dementia, community 2,508 4,935 9, ,689 Moderate dementia, community 2,430 6,224 17, ,877 Severe dementia, community 2,639 7,738 27, ,473 Dementia in residential care setting 1, ,646 31,296 7 National Institute for Health and Clinical Excellence. Dementia Costing Report implementing NICE SCIE guidance in England, Lowin et al Source: Dementia UK Healthcare for London

15 Costs in London are likely to be higher than those listed in figure 8 because of higher salaries and the cost of living. The London effect will vary for each component, but some examples of additional staff costs are given below. Social worker salary: 10% extra in London. Approved social worker (mental health): 20% extra in London. Local authority day care (mental health) revenue cost: 30% higher in London. Community nurse salary: 19% extra in London 10. Introduction Additional costs would also be incurred as a result of high staff turnover and use of agency staff in some areas. Healthcare for London has investigated the cost of dementia in London and the savings needed to ensure investment in memory services is cost neutral. The impact of the introduction of Mental Health Payment by Results (PbR) has been considered (see appendices 6 and 7). Impact on primary care Overall, 23,871 patients are recorded on GP practice registers as having dementia across London 11. This equates to about 37% of the total number of people estimated to have dementia in the capital. Figures for each London PCT are available in appendix 1. While it is not expected that everyone with dementia would appear on GP registers, the current coverage amounts to just over a third of the population affected. There are many reasons why primary care registers may under-record the level of dementia. This might be due to various factors relating to the overall level of services and infrastructure of the practice. Other reasons may include the level of dementia diagnosis and care in each area. Across London 83% of those people with dementia on GP registers, who were eligible to be reviewed by the primary care practice, were reviewed over 15 months during 2007/08 (see appendix 1). Some patients may be excluded from indicators for various reasons and guidance on this is available in the Quality and Outcomes Framework (QOF). Some reasons for exclusions include: Patients who have been recorded as refusing to attend a review who have been invited on at least three occasions during the preceding 12 months. Patients for whom it is not appropriate to review the chronic disease parameters due to particular circumstances e.g. terminal illness or extreme frailty. Patients newly diagnosed within the practice or who have recently registered with the practice. 10 Source: Personal Social Services Research Unit QOF 2007/08 Dementia services guide 15

16 Introduction Prescribing data Over 90,000 prescriptions of dementia-related drugs were made in London during 2007/08 at a cost of 5.7 million. This equates to 1,406.9 prescriptions per 1,000 people estimated to have dementia over the 12 month period and the range between PCTs is shown in figure 9. Further information is provided in appendix 1. Figure 9: Range in prescriptions for dementia related drugs per 1,000 estimated people with dementia, by PCT 2007/08 12 Relative position Highest Average Lowest PCT Lambeth Tower Hamlets Lewisham London Hammersmith & Fulham Croydon Ealing Prescriptions for dementia related drugs per 1000 estimated people with dementia, 2007/ Impact on carers Eleven per cent of people over the age of 65 in London provide informal care to a family member, friend, neighbour or other individual who suffers with dementia. About two thirds of people with dementia, including some who have severe dementia, live in the community supported by informal carers. Most carers are spouses of a similar age to the person for whom they are caring; many will also have some degree of age related impairment or be in poor health. Where spouse care is not available, daughters or other female kin are often involved 13. Dementia can have a devastating effect on family relationships and in particular on the psychological stress, depression and physical strain experienced by the primary carers. This often increases as the severity of the disease progresses. One study 14 found that the number of hours of informal care required also increased once the dementia progressed: people with mild dementia received an average of 13.1 hours a week people with moderate dementia received an average of 39.4 hours a week people with severe dementia received an average of 46.1 hours a week. 12 Source: Healthcare for London, drawn from NHSBSA and EPACT (Prescription Pricing Authority) 13 London Centre for Dementia Care (LCDM/UCL and LBS). London Borough of Sutton older people with dementia service redesign, Langa KM et al. National estimates of the quantity and cost of informal care giving for the elderly with dementia. Journal of General Internal Medicine, 16(11):770-78, 2001 (quoted in LCDC above). 16 Healthcare for London

17 These figures are likely to understate the support provided by carers as they are unlikely to include the long hours required to be spent with someone with severe dementia although not physically carrying out specific caring tasks. Nevertheless, family care often enables people with dementia to continue living at home for a longer period of time, and overall those living with a family carer have been found to be 20 times less likely to be admitted to long-term care 15. A study also found older people with dementia were more likely to move into a residential home if they were frequently active at night, immobile or had difficulty walking, incontinent, being cared for by a carer for more than 16 hours a week, and where the primary carer was female 16. Introduction The need to offer more support for family carers has been recognised in the National Dementia Strategy. A Care Services Improvement Partnership (CSIP) report 17 on short breaks for carers of people with dementia suggests that: There is still limited access to short breaks. There is insufficient choice, in particular on in-home care and affordability. The range of services available in many areas does not reflect the diversity of the population it is commissioned for. Short breaks cannot be seen in isolation from other services supporting people with dementia. There are various types of short breaks available: day care support provided in the person s own home overnight care away from home host family care adult placements emergency breaks. The CSIP report also includes a set of principles that should govern the provision of short breaks, and provides examples of good practice. It is important that this should be seen as part of a wider package of support for carers. 15 Banerjee S et al. Predictors of institutionalisation in people with dementia. Journal of Neurology Neurosurgery and Psychiatry. 74: , 2003 (quoted in LCDC). 16 Eaker ED. Predictors of nursing homes admission and/or death on incident Alzheimer s disease and other dementia cases compared to controls: a population based study. Journal of Clinical Epidemiology 55: , 2002 (quoted in LCDC). 17 Department of Health. Care Services Improvement Partnership. Creative models of short breaks (respite care) for people with dementia, 2008 Dementia services guide 17

18 Introduction 1.7 Strategic context The National Dementia Strategy is a five year strategy designed to guide health and social care commissioners, strategic health authorities, health trusts, practice based commissioners and local authorities, the third sector and independent providers in planning, developing and monitoring services. Service integration and partnership with people with dementia and carers is key to achieving the objectives set out in the National Dementia Strategy. Besides the National Dementia Strategy, this guidance is set within the wider policy context which includes: Our health, our care, our say: a new direction for community services 18. High quality care for all: NHS Next Stage Review final report 19. End of Life Care Strategy promoting high quality care for all adults at the end of life 20. Putting People First: A shared vision and commitment to the transformation of adult social care 21. Carers Strategy: Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own 22. The NICE-SCIE guidelines on supporting people with dementia and their carers in health and social care The benefits of change The Healthcare for London integrated care pathway (section 2) is based on the recommendations made in the National Dementia Strategy and highlights the benefits of change and the need to improve services for people with dementia and their immediate carer. The National Dementia Strategy 24 provides a strategic quality framework to raise awareness of dementia, facilitate early diagnosis and improve services. It outlines 17 objectives to improve the quality of life for people with dementia and their carers under three key themes: raising awareness and understanding early diagnosis and support living well with dementia. 18 Department of Health. Our health, our care, our say: a new direction for community services, Department of Health. High quality care for all: NHS Next Stage Review final report, Department of Health. End of Life Care Strategy promoting high quality care for all adults at the end of life, Department of Health. Putting People First: A shared vision and commitment to the transformation of adult social care, Department of Health. Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own, NICE-SCIE. Supporting people with dementia and their carers in health and social care, Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

19 Figure 10: Delivering the National Dementia Strategy joint commissioning of services among a defined care pathway to enable people to live well with dementia 25 Raising awareness and understanding Early diagnosis and support Living well with dementia Introduction 01 Public information campaign 02 Memory services 03 Information for people with dementia and carers 04 Continuity of support for people with dementia and carers 05 Peer support for people with dementia and carers 06 Improved community personal support 07 Implementing carers strategy for peole with dementia 08 Improved care in general hospitals 09 Improved intermediate care for dementia 010 Housing including telecare 011 Improved care home care 012 Improved end-of-life care Making the change 013 Workforce competencies, development and training 014 Joint local commissioning strategy and World Class Commissioning 015 Performance monitoring and evaluation including inspection 016 Research 017 Effective national and regional support for implementation of the strategy 25 Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 19

20 Introduction 1.9 Key issues for London Population size and composition varies widely. Some PCTs face substantial growth in the numbers of people with dementia while others will see relatively little change (see appendix 1). PCTs will see an increase in the ethnic diversity of their older populations, and many face challenges associated with diagnosing dementia and providing support for more high risk groups such as: people in areas of high deprivation, homeless people, those with learning disabilities, people with HIV, travellers, substance misusers, prisoners, and people who live alone in some cases a long distance from other family members. While local models of care will need to be based on national guidelines and on evidence of clinical and cost effectiveness, specific service requirements will vary across the capital. These will be influenced by differences in populations and in service infrastructure between PCT areas. Implementation of the Healthcare for London integrated care pathway for dementia offers the opportunity to develop a consistent care pathway while taking local differences into account. This will include local commissioning patterns of health and social care services for older people with mental health problems, as well as the availability of key staff, the critical mass required, cost effectiveness and accessibility for people who may have dementia and their carers. 20 Healthcare for London

21 Integrated care pathway Integrated care pathway 2 Dementia services guide 21

22 Integrated care pathway Introduction This section contains the recommended service delivery model for providing dementia care. It includes access to services, the journey through the pathway and the recommended standards for service provision, as well as clinical principles and standards which underpin service delivery. The integrated care pathway provides guidance about effective services and interventions that deliver outcomes for people living with dementia and their carers. Its implementation is designed to: promote integration of care promote the principles of personalisation improve multi-agency working assist in the process of evaluating the quality of care clarify staff roles and responsibilities improve communication between professionals ensure people with dementia receive evidence based care ensure services are measured and continually improved. Commissioners and providers should work together to develop local policies, protocols and practitioner networks which cross professional boundaries and focus on meeting the needs of the local community. The integrated care pathway has been developed to support commissioners by providing best practice guidance and recommendations for efficient and effective care for people with dementia and their carers (figure 1). The pathway includes interventions and recommendations for carers services. 2.1 Patient experience Following a diagnosis of dementia there are key principles and actions that need to be taken to ensure that appropriate support is always available. This support should respond to the changing needs of both the person with dementia and their carer, with the aim of avoiding unmanaged crises. Commissioners and clinicians will need to consider the following issues: Dignity and respect all people with dementia and their carers should be treated as valued individuals with respect for their dignity and privacy, and staff should be sensitive to the cultural needs of patients. Continuity services should be designed to maintain a key contact point who can advocate on behalf of the person with dementia and their carer; for example a dementia adviser role. 22 Healthcare for London

23 Clear communications processes should be in place to ensure that all people with dementia and their carers are able to communicate with staff and convey information in confidence. Information sharing with other healthcare professionals care planning should be coordinated and consistent. This will improve transfers of care and help ensure vulnerability issues are considered. 2.2 Construction of the care pathway The integrated care pathway was developed along the principles of: prevention identification assessment and diagnosis early intervention and treatment living well with dementia end-of-life. Integrated care pathway The integrated care pathway is a multi-disciplinary, multi-agency, planned approach to the delivery of high quality care and support for people with dementia and their carers. It is an age inclusive pathway that covers all people with dementia. It sets out general guidance about services and interventions including effective treatment and therapies for delivering high quality care and support to people with dementia whenever they are in contact with health and social care systems, including those: worried about their memory and other psychological changes seeking a diagnosis of dementia newly diagnosed with dementia experiencing difficulties in activities of daily living living in the community with dementia patients in an acute hospital whose behaviour suggests they may have dementia living in a care home and experiencing difficulties in cognition with learning disabilities at the end of their life. It is recommended that the integrated care pathway is continuously developed in response to feedback from people with dementia and their carers, and local quality and outcome findings. Dementia services guide 23

24 Integrated care pathway The pathway has been set out as boxes that have been given letters and numbers. Each box contains a set of recommended actions and activities: A: actions that need to be undertaken across the pathway P: prevention ID: identification of dementia AD: assessment and diagnosis T: early interventions and treatments W: activities and tasks that enable people to live well with dementia E: end-of-life care. At an individual level, services, interventions and support should: uphold the dignity of people with dementia respect and value diversity and promote equality acknowledge the central role of people with dementia and their carers in the process of planning and developing services ensure that the best and most effective pharmacological and non-pharmacological treatments are widely and consistently available provide the practical advice and information people with dementia and their carers need, as well as developing consistently high quality, comprehensive packages of care and support which enhance access to services include everyone and respond to people on the basis of need not age support the individual to live safely and well at home for as long as possible if desired provide joined up care as part of integrated services contribute to overall wellbeing ensure access to universal services. 24 Healthcare for London

25 Integrated care pathway

26 Figure 1: Integrated care pathway Prevention Identification Assessment and diagnosis Early intervention and treatment Living well with dementia End-of-life Public national awareness campaign and raising awareness locally P1 Ensure health professionals across primary, secondary and tertiary sectors can identify dementia P2 Maintain cognitive and mental health wellbeing: re-establish and maintain links into social networks encourage continuing learning activities encourage cognitive stimulation encourage physical exercise. P3 Ensure vulnerable groups receive adequate physical care P4 Encourage preventative measures: stop smoking eat healthily drink alcohol sensibly exercise more regular health checks. P5 Improved public awareness leads to self identification ID1 Improved awareness of dementia and memory services by health and social care professionals and care home staff ID2 Identification of people from under represented or at risk groups: people with learning disabilities BME groups people with HIV people with delirium patients who do not attend planned follow-up sessions those with vascular conditions those with alcohol and substance misuse problems those that present at A&E and urgent care centres due to falls or delirium those who regularly present at A&E, to their GP or polyclinic. ID3 Use of standard screening tools to identify symptoms that warrant referral to memory services ID4 Assessment: history taking collateral from carer physical examination review of all medications cognitive and mental state examination assess medical and psychiatric co-morbidity consider and assess social situation circumstances. AD1 Investigations: routine haematology biochemistry test thyroid function tests serum vitamin B12 and folate levels CT or MRI scan other tests as indicated following assessment. AD2 If diagnosed with dementia follow best practice to explain the diagnosis to the patient, carer and family AD3 If a patient has a suspected diagnosis of: Mild Cognitive Impairment (MCI) depression anxiety. Review within 12 months to recheck cognitive functions AD4 Add patient to Quality and Outcomes Framework (QOF) register Book annual review of physical, cognitive and mental state and all medication T1 Review repeat prescriptions and all medication If appropriate prescribe dementia medication according to NICE guidelines T2 Post diagnostic information, support and counselling to person with dementia and their carer T3 Trigger initial care planning process and refer to dementia adviser or other service to maintain contact within 12 weeks of diagnosis T4 Carry out carer s assessment T5 Regular review of: cognition and mood state medications in line with NICE guidelines accommodation and environment patients support network personal communication needs previous interventions personal support needs end-of-life plan. W1 Carer and family interventions for improving patient care: strategies for reducing expressed emotion strategies for communication systems therapy/family work strategies for managing challenging behaviour provide reliable information. Carer and family interventions for maintaining carer wellbeing: support and counselling peer support networks respite provide reliable information. W2 Patient interventions: psychological therapies social/occupational activities identify advocate where appropriate teach money management techniques creative art therapies e.g. dance and music. W3 Physical health interventions: review physical care e.g. eating, continence, constipation, personal care, pressure sores, pain relief review co-morbid physical conditions e.g. diabetes, COPD, high blood pressure. W4 Environmental interventions: make early adjustments to housing assess equipment for activities of daily living medication prompts assistive technology e.g. telecare assess and provide home care changes to support patient to deal with anxiety and agitated behaviour ensure calm and familiar surroundings ensure safe environment. W5 A1 12 Weeks Planning Programme: care planning, living well planning, financial planning, mental capacity planning, choosing a carer, end of life (see T3) A2 Maintain a key contact point who can advocate on behalf of the patient and carer Recognise dementia as a terminal illness E1 Follow guidance outlined in the Department of Health s End of Life Care Strategy E2 Involve carers and family E3 Exercise the Mental Capacity Act E4 Ensure faith and cultural preferences are taken into account if patient cannot communicate their choice E5 Identify if the person with dementia already has a plan and act on that plan E6 Where possible patients with dementia who are dying should not be moved from their usual place of residence in their last days E7 Recognition of the difference between symptoms of dementia and delirium ID5 A3 Review and address: physical health needs, other physical healthcare, physical healthcare pathway A4 Provide and explain information to patients, carer and family and provide reassurance. Review psychological needs and refer on as appropriate A5 Share information with other healthcare professionals. Vulnerable adults awareness A6 Agree indicators for moving along pathway and implement Mental Capacity Act as appropriate

27 2.3 Detailed description of the care pathway A Actions to be taken across the pathway Following a diagnosis, people with dementia and their carers need good support along the pathway. Key actions (A1-A6) will ensure that support is always available. Care plans should: be developed in partnership with people with dementia and their carers be shared between professionals and agencies involved in the care and treatment. It is important to ensure that vulnerable adults (P4) are identified and local protocols are followed include details of services; ensure financial and legal aspects are in place to meet the needs along the pathway; from living well to end of life care (A1) detail the patient s psychological, psychiatric and physical health needs (A3), how these are to be met and by whom (A4) be regularly monitored and reviewed (A1). Part of the care planning process will include identification of a dementia contact point (A2) and information giving (A5). Integrated care pathway A1 12 Weeks Planning Programme: care planning living well planning financial planning mental capacity planning choosing a carer end-of-life (see T3). Planning needs to start early, as it will be beneficial for both the person with dementia and their carer. Early planning will also improve the likelihood that service capacity is available. Research shows that a memory service provides a suitable setting to generate an early diagnosis, which can enable choice and forward planning while people have capacity 1. A2 Maintain a key contact point who can advocate on behalf of the patient and carer A consistent point of contact who can advocate on behalf of both the patient and their carer is required. A professional relationship should be developed with the person with dementia and their carer. The key contact should have a good understanding of their needs, condition and history. The point of contact should be consistent and accessible. 1 Banerjee and Wittenberg. Clinical and cost effectiveness of services for early diagnosis and intervention in dementia, 2009 Dementia services guide 25

28 Integrated care pathway A3 Review and address: physical health needs other physical healthcare physical healthcare pathway. A4 Provide and explain information to patients, carer and family and provide reassurance Review psychological or psychiatric needs and refer on as appropriate It is important to ensure a joined up and coordinated care plan which meets the needs of the person with dementia and their carer. Providing written information and websites to gain further information is useful to the person with dementia and their carer. It will help with the difficult process of acceptance and understanding, allowing people to access information at a speed that is right for them. Provide a place to discuss their diagnosis and the opportunity to ask questions.. A5 Share information with other healthcare professionals Vulnerable adults awareness It is essential to have a coordinated and consistent approach to care planning. This will help reduce delayed transfers of care and ensure that vulnerability issues are not overlooked. Vulnerable adults can suffer abuse, therefore local safeguarding protocols should be followed 2. A6 Agree indicators for moving along pathway and implement Mental Capacity Act as appropriate Involving the person with dementia and their carer, as part of the care planning process, will give confidence that changing needs will be met appropriately along the pathway. It is good practice to discuss with the person with dementia and their carer, while they still have mental capacity, about the use of: advance statements (stating what is to take place if the person loses the capacity to communicate or make decisions) advance decisions to refuse treatment Lasting Power of Attorney A Preferred Place of Care Plan 3. As the person with dementia deteriorates, decisions about sharing information should be made in the context of the Mental Capacity Act Royal College of Psychiatrists., Institutional abuse of older adults, Council Report CR84 3 NICE-SCIE. Dementia Quick Reference Guide, Healthcare for London

29 P P1 Prevention Public national awareness campaign and raising awareness locally Stigma, social exclusion, age discrimination and the attitudes of some professionals and care staff may prevent those who are worried about their memory from seeking help during the early stages of dementia. Reliable and good quality information, especially about the benefits of early diagnosis and living well with dementia, can overcome barriers to identification and encourage contact. Integrated care pathway A national public information campaign, phased over a number of years, is being developed by the Department of Health. Engaging at a local level with the community will give a greater understanding of local needs. P2 Ensure health professionals across primary, secondary and tertiary sectors can identify dementia All staff in contact with older adults must be provided with accessible and accurate information about dementia, and the health, social care and community services that are available. Primary care trusts (PCTs), hospital trusts and local authority partners should ensure their front line staff have gained a basic competence in understanding the symptoms of dementia. The NICE-SCIE guidelines 4 provide evidence to support the professional education and training needs of health and social care staff. P3 Maintain cognitive and mental health wellbeing: re-establish and maintain links into social networks encourage continuing learning activities encourage cognitive stimulation encourage physical exercise. Achieving the standard related to prevention of dementia requires PCTs and local authorities to work with other health partners to: develop joint strategies for raising awareness about prevention of dementia in local communities promote cognitive, emotional, mental and physical wellbeing ensure responses to major national campaigns e.g. Safe, Sensible, Social: The next steps in the National Alcohol Strategy (2007) include information about risks of alcohol-related brain damage and signpost sources of help promote the use of services such as leisure centres to enable people to maintain healthy lifestyles. 4 NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, 2006 Dementia services guide 27

30 Integrated care pathway P4 Ensure vulnerable groups receive adequate physical care Groups who are particularly vulnerable include: people with learning disabilities older adults, people aged over 85 people with co-morbidities women living alone working/middle-aged adults with low health status and poor lifestyles. P5 Encourage preventative measures: stop smoking eat healthily drink alcohol sensibly exercise more regular health checks. Physical ill health and problems relating to physical functions can increase the risk of dementia. Encouraging a healthy lifestyle is important. It is recommend by the Alzheimer s Society that people take regular exercise; eat healthily, take part in social activities and make sure they get their blood pressure checked. It is important that people are made more aware that what is good for your heart is also good for your head. New Horizons, Towards a shared vision for mental health states that keeping physically healthy is good for all aspects of mental health and physically fit people have a lower rate of dementia. Up to half of all people with dementia may have a vascular component (i.e. vascular dementia or mixed dementia). Current health promotion messages on diet and lifestyle, and regular health checks are therefore likely to reduce this risk 5. 5 Department of Health. New Horizons, Towards a shared vision for mental health, Healthcare for London

31 ID ID1 Identification Improved public awareness leads to self identification People with dementia and their families are often reluctant to seek help, and can sometimes mask and deny difficulties, managing problems until a crisis occurs. Early identification of dementia offers those affected and their families the opportunity of an early diagnosis and the chance to make plans for living well with dementia. Good practice in breaking bad news of a diagnosis is sharing the information with the patient and carer at the speed of the individual s understanding and willingness to listen. Integrated care pathway Important points for identification are: proactive work by primary care e.g. case finding recognition by staff in generic services e.g. in general hospitals (see section 3 on general hospital care pathway and guidance) and social care settings. The benefits of early identification include: identification of treatable physical and psychiatric causes treatment of co-morbidity and other conditions medication in line with NICE-SCIE guidelines 6 reliable instigation of pharmacological treatments information for individuals and families to provide them with a better explanation and understanding of the diagnosis access to local support services and legal and financial advice identification of more socially vulnerable individuals (older adults over 85, living alone, poor housing) at greater risk of admission to care referral to psycho-social support help with daily living activities opportunity for people with dementia and their carers to plan for the future. 6 NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, 2006 Dementia services guide 29

32 Integrated care pathway ID2 Improved awareness of dementia and memory services by health and social care professionals and care home staff This group includes: primary care, general hospital and mental health staff care managers in adult care services and social care staff in the independent sector third sector and private providers. Residential and nursing care home staff must be trained to recognise residents who may have dementia and ensure care plans take account of cognitive impairment and reflect person-centred care. ID3 Identification of people from under represented or at risk groups: people with learning disabilities BME groups people with HIV people with delirium patients who do not attend planned follow-up sessions those with vascular conditions those with alcohol and substance misuse problems those that present at A&E and urgent care centres due to falls or delirium those who regularly present at A&E, to their GP or polyclinic. The setting for identifying those who are under represented or at risk is through GP practices and general hospitals. Following the recommendations of the National Dementia Strategy 7 professionals and care staff need to be able to identify individuals with possible dementia. They must also give good basic information and advice and refer appropriately to local memory services. 7 Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

33 ID4 Use of standard screening tools to identify symptoms that warrant referral to memory services Refer to the NICE-SCIE guidelines for standard screening tools, e.g. Mini Mental State Examination (MMSE) and Cambridge tools 8. Memory services for the early identification and care of people with dementia should be available for local people and should provide a single point of referral. Their functions are: early identification and referral of people with a possible diagnosis of dementia a high quality service for the assessment, diagnosis and management of dementia. Integrated care pathway ID5 Recognition of the difference between symptoms of dementia and delirium To recognise signs and symptoms of delirium refer to the NICE-SCIE guidelines 9. The guidelines define delirium as: Delirium (acute confusional state) is a common condition in the elderly affecting up to 30% of all elderly medical patients. Patients who develop delirium have high mortality, institutionalisation and complication rates, and have longer lengths of stay than non-delirious patients. Delirium is often not recognised by clinicians, and is often poorly managed. Delirium may be prevented in up to a third of older patients. The aim of these guidelines is to aid recognition of delirium and to provide guidance on how to manage these complex and challenging patients. Health and social care staff need to: ensure all local services promote easy access to care and treatment support the individual s journey from the early stages. Based on the National Dementia Strategy, Healthcare for London recommends that all complex cases and younger people with dementia are referred 10 to specialist services. 8 NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 31

34 Integrated care pathway Below is the process flow of a person with dementia: Person with memory problem in community primary care acute hospital. Prevention and awareness Identification Present to primary care Not having: depression delirium learning difficulties. *May need specialist assessment Assessment and diagnosis Specialist memory service Living well with dementia Mild cognitive impairment review 6-12 months Uncomplicated memory problem investigation/assessment diagnosis communications treatments. Memory problem complicated by: 1. Behavioural and psychological symptoms of dementia, depression. Needs are best met by mental health services. 2. Complicated neuropsychiatric, neuropsychological, neuorlogical condition. 3. Main concern is physical health in the back drop of dementia. Best suited to older adults physicians. End-of-life End-of-life 32 Healthcare for London

35 AD AD1 Assessment and diagnosis Assessment: history taking collateral from carer physical examination review of all medications cognitive and mental state examination assess medical and psychiatric co-morbidity consider and assess social situation circumstances. As outlined in the NICE-SCIE 11 guidelines, these assessments need to be carried out for a diagnosis to be made. Integrated care pathway AD2 Investigations: routine haematology biochemistry test thyroid function tests serum vitamin B12 and folate levels CT or MRI scan other tests as indicated following assessment. Clinical examinations should be based on a standardised system in line with the NICE-SCIE guidelines using specified and agreed tools. Investigations can include syphilis serology and HIV tests if indicated. AD3 If patient is diagnosed with dementia follow best practice to explain the diagnosis to the patient, carer and family There is an increased likelihood that people with Mild Cognitive Impairment (MCI) may go on to develop dementia. It is estimated that about 15% will develop dementia every year and 90% of these will develop Alzheimer's disease 12. It is suggested that improved access to memory services will increase early identification and diagnosis. 11 NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, Royal College of Psychiatrists (2005) Dementia services guide 33

36 Integrated care pathway AD4 If a patient has a suspected diagnosis of: Mild Cognitive Impairment (MCI) depression anxiety. Review within 12 months to recheck cognitive functions A systematic and supportive approach to providing diagnosis should be established. Locally agreed joint procedures should cover: pre-diagnosis counselling diagnosis and prognosis post diagnosis services and support including information in a range of formats care planning and management follow-up care arrangements. 34 Healthcare for London

37 T1 T1 Early interventions and treatments Add patient to Quality and Outcomes Framework (QOF) register Book annual review of physical, cognitive and mental state prescriptions and all medications Inclusion on the patient register as prescribed in the QOF will provide an additional mechanism to guarantee that the patient s care is managed in a systematic way. Ensuring any changes are noted in the annual reviews provides a good record for the future management of the patient, either in a primary care setting or by a specialist. It is important to record the person on the QOF register under the appropriate code. Incorrect data cannot be removed. Integrated care pathway T2 Review repeat prescriptions and all medication If appropriate prescribe dementia medication according to NICE guidelines The NICE-SCIE guidelines note that an appropriate diagnosis of dementia can be made in primary care 13 as most specialists undertake broadly similar assessments in terms of history, mental state and blood tests. The use of other diagnostic tests varies considerably. T3 Post diagnostic information, support and counselling to person with dementia and their carer The NICE-SCIE guidelines indicate it is good practice to share the diagnosis with the person with dementia. It must be acknowledged that there may be difficulties in accepting a diagnosis. Diagnosis and follow-up support sessions should be delivered at the individuals own pace. Local services should contribute to the resource pack. The information should be renewed regularly. Information, services and the resource pack should meet the needs of the local community. 13 NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, 2006 Dementia services guide 35

38 Integrated care pathway T4 Trigger initial care planning process and refer to dementia adviser or other service to maintain contact within 12 weeks of diagnosis T5 Carry out carer s assessment During the post-diagnosis period, a local multidisciplinary dementia team will meet with the person with dementia and their carer, in order to devise a routine for that person which might include examining health issues (e.g. eyesight and hearing tests), psychological wellbeing, exercise or interaction with social groups. This would also include consideration of home care assistance if necessary. The carer s assessment is as important to the process as the assessment for the person with dementia for ensuring the carer, who is often elderly, is able to provide the necessary care and support. An example of this can be found in Mittelman 14, where in a sample of 406 spouse carers there was a 28.3% reduction in the rate of nursing home placements where they received the combined intervention of individual, group and telephone counselling. It is worth noting that over 60% of the intervention s beneficial impact was accounted for in terms of improvements in carers satisfaction with social support, their response to patient behavioural problems and improvements in their demonstration of symptoms of depression. 14 Mittelman et al. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease, Neurology 67: Healthcare for London

39 W W1 Living well with dementia Regular review of: cognition and mood state medications in line with NICE guidelines accommodation and environment patients support network personal communication needs previous interventions personal support needs end-of-life plan. The NICE-SCIE guidelines emphasise the importance of effective communication strategies in reducing the level of dependency of the person with dementia. It is recommended that commissioners and clinicians review examples of best practice outlined in the guidelines. There is evidence that written and pictorial communication have an important role to play 15. Integrated care pathway W2 Carer and family interventions for improving patient care: strategies for reducing expressed emotion strategies for communication systems therapy/family work strategies for managing challenging behaviour provide reliable information. Family carers may experience difficulty and be unable to continue to care for the person with dementia if they develop challenging behaviour. Previously the only option was to use medication to manage this type of behaviour. There are interventions to help with challenging behaviour such as Prevention and Management of Violence and Aggression (PMVA) trainers 16. Professionals can help train carers, and speech and language therapists can provide advice to carers on how to better understand the communication needs of the person with dementia. The Newcastle Model 17 provides a framework for understanding the cause of the person s challenging behaviour and a process by which interventions are delivered. Carers and family members should be made aware of the availability of local services to support them, such as respite care, peer support and the availability of carer grants and other provisions outlined in the Carers Strategy 18. This is likely to vary considerably between boroughs and it should not be assumed that carers are aware of what is provided in their area. It is best practice that every borough should have access to an Admiral nurse. 15 Oddy, R Age Concern England. Promoting Mobility for People with Dementia: a Problem Solving Approach, Department of Health. Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own, 2008 Dementia services guide 37

40 Integrated care pathway Carer and family interventions for maintaining carer wellbeing: support and counselling peer support networks respite provide reliable information. In April 2009 the Mental Health Foundation launched Dementia Choices which is a two year project, funded through the Department of Health s Innovation, Excellence and Service Development Third Sector Investment programme. The objective of Dementia Choices is to explore and promote different forms of self-directed support, including direct payments, individual and personal budgets, for people living with dementia and their carers. More information can be found on the Mental Health Foundation website 19. W3 Patient interventions: psychological therapies social/occupational activities identify advocate where appropriate teach money management techniques creative art therapies e.g. dance and music. Non-pharmacological interventions continue to be developed to help maintain cognitive functioning. Three major types of psychological interventions are identified in the NICE-SCIE guidelines: cognitive stimulation cognitive training cognitive rehabilitation. W4 Physical health interventions: review physical care e.g. eating, continence, constipation, personal care, pressure sores, pain relief review co-morbid physical conditions e.g. diabetes, COPD, high blood pressure. In 2007 the London Network of Nurses and Midwives produced a guide 20 to support successful implementation of the pathway. The guide states that physical health needs are as important as mental health requirements, and should be looked at as part of an holistic package that seeks to improve the wellbeing and experiences of the person with dementia. It emphasises the importance of mental health workers receiving relevant training to broaden their skills, provide improved health assessments and engage in health promotion activities London Network of Nurses and Midwives 38 Healthcare for London

41 W5 Environmental interventions: make early adjustments to housing assess equipment for activities of daily living medication prompts assistive technology e.g. telecare assess and provide home care changes to support patient to deal with anxiety and agitated behaviour ensure calm and familiar surroundings ensure safe environment. The NICE-SCIE guidelines state the principles for the design of care environments are largely based on theory. However, the underlying objective should always be for the design to cater for, and stimulate, the abilities of people with dementia. It is important to remember that factors including the level of impairment, history, culture and religion can mean individual requirements can vary considerably. Technological developments have made life easier for people with dementia and their carers in certain situations. The term 'assistive technology' refers to 'any device or system that allows an individual to perform a task they would otherwise be unable to do, or increases the ease and safety with which the task can be performed' 21. This includes equipment and devices to help people who have problems with: speaking hearing eyesight moving about memory cognition (thought processes and understanding). Integrated care pathway Assistive technology ranges from very simple tools, such as calendar clocks and touch lamps, to high-tech solutions such as satellite navigation systems to help find someone who is lost. Assistive technology can help by: increasing independence and choice, both for the person with dementia and those around them reducing the risk of accidents in and around the home reducing avoidable entry into residential and hospital care reducing the stress on carers, improving their quality of life, and that of the person with dementia Royal Commission on Long Term Care, Dementia services guide 39

42 Integrated care pathway 40 Healthcare for London

43 E E1 End-of-life The Department of Health s End of Life Care Strategy 23 and Healthcare for London s end-of-life project focus in more detail on this stage. Below is a brief overview on the main points for end-of-life care. Recognise dementia as a terminal illness Health and social care staff will recognise dementia as a terminal illness. People who have a diagnosis of dementia, and their carers, will need support to make end-of-life plans while they have sufficient mental capacity to do so. Refer to the Mental Capacity Act guidance 24. Integrated care pathway E2 Follow guidance outlined in the Department of Health s End of Life Care Strategy Guidance in the Department of Health s End of Life Strategy 25 refers to: Liverpool care pathway for Dying Patient (LCP) gold standard framework preferred priorities of care policy. Local work on end-of-life care will need to be developed to provide services which meet the needs of the community. The National Council for Palliative Care has been evaluating end-of-life care for people with dementia and has published a series of publications on best practice 26. E3 Involve carers and family It may be difficult to know when to move from providing general dementia care to providing palliative care as there could be complications in accurately predicting the prognosis. Health and social care professionals working with people with dementia and their carers should adopt a palliative care approach. They should consider physical, psychological, social and spiritual needs. Palliative care professionals, other health and social care professionals and commissioners should ensure that people with dementia who are dying have equal access to palliative care services. Specialist practitioners such as Admiral nurses should provide support to families and carers when the person with dementia is close to death. 23 Department of Health. End of Life Care Strategy promoting high quality care for all adults at the end of life, Department of Health. End of Life Care Strategy promoting high quality care for all adults at the end of life, Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 41

44 Integrated care pathway E4 Exercise the Mental Capacity Act E5 Ensure faith and cultural preferences are taken into account if patient cannot communicate their choice Good practice is to undertake regular mental capacity assessments. Health and social care staff should be guided by families, carers and faith groups to ensure that they respect the faith and cultural needs of the person with dementia and their families. E6 Identify if the person with dementia already has a plan and act on that plan Earlier diagnosis, clearer guidance and more accurate information with additional support from a dementia adviser is recommended. Individuals with dementia will increasingly reach the end of their lives having made a plan in advance for their health, welfare and finances. Health, social and palliative care staff must ensure that people with dementia have: access to pain relief access to hospice care. E7 Where possible patients with dementia who are dying should not be moved from their usual place of residence in their last days Any decision to move people dying with dementia into hospital or to resuscitate them, should take the following into account: any expressed wishes or beliefs of the person with dementia the views of the carers the views of the multi-disciplinary team. Any decision made not to resuscitate: should be made in accordance with the guidance developed by the Resuscitation Council UK22 if the person lacks capacity, the provisions of the Mental Capacity Act 2005 apply must be accurately recorded in the medical notes and care plan. 42 Healthcare for London

45 2.4 Workforce competencies Healthcare for London has identified a range of core competencies applicable to particular stages across the care pathway. These competencies need to inform the health and social care of the person with dementia, regardless of the individual or agency providing that care. It is important that the key principles of the patient s experience (see section 2.1) are taken into account. Healthcare for London acknowledgements 1 Core competencies are required to ensure an integrated and seamless workforce, not a workforce artificially divided into health and social care. 2 Many people with dementia do not experience high standards of health and social care. 3 Sustained work is needed to embed competencies in the workforce, including third and private sector workforces. 4 Ongoing competency development and evaluation of services needs to be a condition of commissioning. Integrated care pathway The core competencies and good practice at each stage of dementia care for all staff in healthcare, social care, and the third sector should: promote an information culture communicate effectively with individuals 27 empower families, carers and others to support individuals 28 communicate with older people and their carers 29 involve the person with dementia in their own care planning, adhering to the value base of care (identity, dignity, respect, choice, independence, privacy, rights, culture) understand the need to support and work with family and friends of the person with dementia Skills for Health competency suite for General Health Care 28 Skills for Health competency suite for Health and Social Care 29 Skills for Health competency suite for Older People 30 Skills for Care knowledge set for Dementia Dementia services guide 43

46 Integrated care pathway Good practice for workforce competencies 1 All staff should have appropriate written and verbal language skills to communicate effectively with people with dementia The skills of all staff working in generic, non-specialist areas should be enhanced to better meet the requirements of older people with mental health problems Promote integrated health and social care working and services that focus on the needs of the older person, providing flexible and individualised approaches to care. This is likely to include working across organisational and agency boundaries and may include jointly funded posts 33. A more detailed description of the workforce competencies required across the integrated care pathway for dementia can be found in appendix Outcomes The key outcome identified for the integrated care pathway is ensuring appropriate care and support for people with dementia and their carers. Key to this is improved support for people caring for those with dementia and ensuring that all carers have equitable access to support and services. It is recommended that boroughs commission Admiral nurses or another healthcare professional whose objective is to work with and support the carer. See appendix 8 for a full list of outcomes. 31 The Social Care Institute for Excellence has launched Care Skillsbase for social care employees in partnership with Skills for Care. These are free, web based resources offering practical support to develop the communication and number skills of the workforce. It can be accessed at 32 Department of Health. Everybody s Business Integrated mental health services for older adults: a service development guide, Care Services Improvement Partnership, Department of Health. Everybody s Business Integrated mental health services for older adults: a service development guide, Care Services Improvement Partnership, Healthcare for London

47 General hospital care pathway General hospital care pathway 3 Dementia services guide 45

48 General hospital care pathway Introduction Healthcare for London has developed a general hospital care pathway for people with dementia who are admitted to a general hospital through A&E or the emergency assessment unit. This care pathway also gives guidance to practitioners for an unplanned admission or a planned admission for elective surgery, or treatment not directly associated with cognitive impairment or dementia. The importance of the role of the carer and family of the person with dementia is highlighted throughout the pathway. The guidance should be read in conjunction with the care pathway (see figure 5). This guidance is aimed at health and social care commissioners, mental health providers, and general hospital staff and carers. 3.1 Policy context National policy The National Dementia Strategy outlines a clear policy directive to improve the quality of care for people with dementia who are admitted to a general hospital. This is outlined in Objective 8 1. 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. 1 Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

49 The strategy outlines four actions to deliver this objective and this guidance addresses these: Identification of a senior clinician in the general hospital to take the lead for quality improvement in dementia. The role description for this function can be found in appendix 4. Development of an explicit care pathway for the management and care of people with dementia in hospital, led and supported by the senior clinician. Healthcare for London supports this pathway and outlines ways to implement it to meet local needs. The gathering and synthesising of existing data on the nature and impacts of specialist liaison older people s mental health teams who work in general hospitals. The care pathway states that these should be in place. Thereafter, the commissioning of specialist liaison older people s mental health teams to work in general hospitals. General hospital care pathway Dementia in general hospitals The National Dementia Strategy highlights that up to 70% of acute hospital beds are currently occupied by older people and up to half of these may have cognitive impairment 2. If this data is translated into the number of admissions to London acute hospitals for people with cognitive impairment, this would equal 370,560 of all admissions during 2007/08 3. It is interesting to compare the reported number of 1,315 emergency admissions during 2006/07 4. This information suggests that the number of people with dementia is being under reported in Hospital Episode Statistics (HES) making it difficult to plan services to meet the needs of patients with dementia or cognitive impairment. The trend in emergency hospital admissions for people with a main diagnosis of dementia in London is summarised in figure 1. This covers all hospitals and suggests that admissions fell by 19% over a four year period. Figure 1: Emergency hospital admissions and bed days for dementia, London SHA 2003/2004 to 2006/07 5 Year 2003/ / / /07 Emergency hospital admissions 1,448 1,334 1,326 1,315 Emergency hospital bed days 76,484 72,848 64,323 61,784 2 Department of Health. Living well with dementia: A National Dementia Strategy, Hospital Episode Statistics (HES) IP 2007/08 4 Healthcare for London. Dementia Needs-Assessment, Source: Department of Health Disease Management Information Toolkit Dementia services guide 47

50 General hospital care pathway The sources of the admissions for 2006/07 are shown in figure 2. Almost two thirds of admissions came through A&E. Figure 2: Source of emergency admission for dementia, London SHA 2006/07 6 More detailed information about the numbers of people in London admitted to hospital with a diagnosis of dementia in 2007/08 is available in appendix 1. Dementia is rarely given as the main reason for admission to hospital but it may be recorded as a second, third or other diagnosis. People with dementia are more likely to be admitted for other clinical reasons and require specialist care throughout their hospital stay. Figure 3 shows the number of people with a main diagnosis of dementia, while figure 4 provides data for people admitted with any diagnosis of dementia. Across London the latter group contains over seven times the number of patients in the former group (17,108 patients compared to 2,326 patients). 6 Source: Department of Health Disease Management Information Toolkit. 48 Healthcare for London

51 Figure 3: Range of admission rates for people admitted to hospital with a main diagnosis of dementia, per 1000 residents estimated to have dementia by PCT, 2007/08 7 Relative position Highest Average Lowest PCT Tower Hamlets Waltham Forest City & Hackney London Enfield Harrow Barnet People admitted to hospital with a main diagnosis of dementia per 1000 population with dementia General hospital care pathway Figure 4: Range of admission rates for people admitted to hospital with any diagnosis of dementia, per 1000 with dementia by PCT, 2007/08 8 Relative position Highest Average Lowest PCT Newham Waltham Forest Islington London Brent Harrow Bexley People admitted to hospital with any diagnosis of dementia per 1000 population with dementia Intermediate care Objective 9: Improved intermediate care for people with dementia Intermediate care which is accessible to people with dementia and which meets their needs. There is a comprehensive case for change set out in the National Dementia Strategy. The strategy states there is good clinical evidence that people with mild or moderate dementia with physical rehabilitation needs do well if given the opportunity. People with severe dementia may need more specialist services geared to meet their mental health and general physical rehabilitation 9. 7 Source: HES 2007/08 and dementia prevalence estimates Source: HES 2007/08 and dementia prevalence estimates Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 49

52 General hospital care pathway In London the service has implemented a number of strategies which ensure that people with dementia are not excluded providing their physical rehabilitation needs meet the criteria. End-of-life care is addressed in the Healthcare for London dementia integrated care pathway (section 2). Improving care Currently, the Government is focusing on improving the experience of older people, including those with dementia, who receive health and social care services. The Dignity in Care initiative 10 has been set up to meet these needs. The important contribution made by family and unpaid carers to the health economy is recognised. The Department of Health s strategy Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own 11 sets out the Government's short-term agenda and the 10 year vision for the future care and support of carers. Financial impact With the projected increase in numbers of people with dementia estimated at between 0.8% and 1.3% of the London population annually 12 the financial pressure is likely to increase. Given the proportion of people admitted to hospital with cognitive impairment, this is likely to have a substantial impact on the number of people admitted to general hospitals with cognitive impairment, delirium and dementia. As the general hospital payment tariff is by activity; there remains a real pressure on PCTs to reduce the number of unplanned admissions to general hospitals and on providers to ensure patients move through the hospital as quickly as possible. With the focus on quality, including hospital quality accounts and the likely expansion of the Commissioning for Quality and Innovation (CQuIN) 13 incentive. This incorporates payments for enabling quality improvements into service contracts, there is an opportunity to achieve improvements in care delivery for people with dementia and their carers. PCT performance and regulation priorities The Operating Framework for 2009/10 14 highlights dementia as one of its priority areas to be determined locally. This means PCTs must agree key performance indicators and targets locally. The Quality Audit 15 contains a number of outcomes which focus on dementia. These outcomes have been incorporated into the care pathway and those relating to dementia are in appendix 10. The Royal College of Psychiatrists plan to undertake a sentinel audit of the experience and care of people with dementia and their carers in general hospitals. This audit would be repeated on a regular basis and will be available as a good practice assessment tool for acute services. 10 Social Care Institute for Excellence. Dignity in care, Department of Health. Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own, Department of Health. Dementia Needs-Assessment, Department of Health. Using the Commissioning for Quality and Innovation (CQuIN) payment framework, Department of Health. The NHS in England: The operating framework for 2009/ Department of Health. The NHS in England: The operating framework for 2009/10, Healthcare for London

53 3.2 Construction of the general hospital care pathway The care pathway was developed as a direct response to Objective 8 16 of the National Dementia Strategy. Anecdotal evidence suggests people with dementia in London struggle to receive good quality, dignified care in some hospitals. It was agreed that a generic pathway should be used for all older people admitted to a general hospital. Additional clinical care actions (see section 3.3) were created to be implemented by staff. The actions outlined in these alerts will ensure the person with dementia and their carer receive: high quality physical healthcare based on good information and a strong clinical evidence base a dignified and person-centred experience an experience that minimises distress and ensures the patient is discharged without losing more functionality than if they did not have dementia a reduced length of stay and improved satisfaction from the discharge process. General hospital care pathway There will also be a positive impact on staff: Patients behaviour will be less likely to deteriorate and become problematic. Improved sense of competency in dealing with patients with dementia, cognitive impairment and subsequent behaviours. Less stress leading to greater job satisfaction. Better informed and experienced healthcare professionals due to learning being embedded in to the day-to-day patient care. Impact on managers: A reduction in the number of people with a diagnosis of dementia being medically fit and waiting for community discharge plans to be put in place. A reduced number of medically fit people with a diagnosis of dementia waiting for residential or care home placements. Addressing the culture of dementia care by embedding learning within the workforce will be the foundation for building services to deal with the inevitable increase in the number of people with dementia being admitted to general hospitals. 16 Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 51

54 Figure 5: General hospital care pathway General hospital care pathway Unplanned admission London Ambulance Service gets a call Physical assessment Background assessment ACTION 1 Person is referred to emergency assessment unit by GP and makes their own way there No confusion Confused state (no known diagnosis of dementia) ACTION 2 Confused state (known dementia diagnosis) ACTION 2 Acute confusional state (known dementia diagnosis) ACTION 2 Person arrives at A&E by own accord Arrive at A&E ACTION 3 Emergency assessment unit Triage assessment memory/confusion assessments ACTION 4 GP letter with clinical details ACTION 5 Move patient to bed ACTION 6 Any needs associated with their condition are recorded MMSE **Pay special attention to communication needs and initial pain relief ACTION 7 Clear treatment plan made Patient referred to a ward or discharged ACTION 8 52 Healthcare for London

55 Admission to ward treatment choices Planned admissions Pre-assessment clinic: physical assessment assessment of background and dementia or memory problems MMSE recorded. ACTION 9 Unplanned admissions Treatment plan identified at A&E and emergency assessment unit General hospital care pathway Low MMSE and dementia diagnosis? Low MMSE and no dementia diagnosis? Discharge patient? Yes Discharge Create specialist management plan for treatment and discharge Refer back to GP Refer to memory service No Planned elective admission Move patient to ward ACTION 10 Allocate bed and ensure patient is comfortable ACTION 11 Nurse care plan: diet/nutritional and personal care needs communication (e.g. how the patient requests the toilet, etc) how the patient describes pain review medication capacity. ACTION 12 Ensure patient is pain free pain control ACTION 13 Start discharge planning ACTION 14 Refer to hospital discharge team Dementia services guide 53

56 General hospital care pathway Discharge A&E assessment (quick): treatment complete return to own home carer at home no admission 4 hour A&E. A&E assessment notification sent to GP ACTION 15 Recommend onward referral for further assessment at memory service Discharge planning Swift discharge after planned and unplanned admission Discharge notification sent to GP ACTION 15 Hospital discharge assessment: re-instate/new homecare package equipment needs carers assessment. Full pre-discharge assessment: discharge to home carers needs should be assessed if appropriate social care assessment ACTION 16 Complex discharge planning Medically fit Regular homecare review Community nurse/gp nurse Discharge to own home Maximum support package needs 24 hour care Process for residential care: engage family and Friends ensure R.C.H meets the individual needs continuing care assessment Discharge to intermediate care Rehabilitation Post-discharge intermediate care services Rehabilitation Ongoing assessment is continually deteriating can carers manage quality of life issues Admit to residential care/nursing home ACTION Healthcare for London

57 3.3 Action descriptions This section should be read in conjunction with the general hospital care pathway in figure 5 and the workforce competencies in appendix 3. A person with a diagnosis of dementia or who demonstrates cognitive impairment should pass through the standard care pathway for general hospitals, receiving all the generic health and social care treatments and services available as well as the clinical care actions highlighted. The actions are aimed at healthcare professionals attending to the patient and their carer at a given stage of the pathway. For example, Action 1 could be for an out-of-hours GP or a London Ambulance Service staff member. Actions 1 and 2 apply in the patient s usual place of residence, home, care home or other public place. Actions 3 to 9 apply on arrival at hospital. General hospital care pathway Action 1: Physical and background assessment Is the patient confused? Check for message in a bottle. Message in a bottle is an empty milk bottle in the fridge that contains a piece of paper giving key information about the patient such as emergency contact information and current medication. Check for medical history information. Does the patient have a known diagnosis of dementia or confusion? Check all medications and the patient s home environment, e.g. is there evidence of neglect? Find a carer (paid professional or informal) relative or neighbour to ask about the patient s history. Contact the GP to find out if there is a diagnosis of dementia or known cognitive impairment. Is the Older Peoples Community Mental Health Team (OPCMHT) involved? Establish who the key worker is and contact them. Recognise that people with dementia or cognitive impairment quickly get more confused and have greater difficulties in communicating if the environment is busy or noisy. Maintain calm surroundings. Consider these options: Will this patient benefit from general hospital inpatient treatment? Could this patient receive appropriate community or home based treatment? Dementia services guide 55

58 General hospital care pathway Why evidence base and outcome If someone has dementia or is confused they may not be able to answer questions. They may be distressed or in pain and may not be able to communicate with you. If they are not able to answer, seek evidence or more information. Evidence shows that people with dementia can find general hospitals distressing and frightening. Often the person s functionality reduces following a stay in hospital 17. Carers or family members will know the patient well. They will understand how best to communicate and will be able to help you with your assessment, particularly around pain and pain relief. The carers will have their own needs which must also be respected. Action 2: Confused state Carry out relevant assessments and investigations to exclude treatable physical causes for the presentation e.g. chest or urinary tract infection. Carry out a brief standardised memory assessment e.g. MMSE or CDS. Obtain the carer s phone number. Locate the patient s medications and ensure these are taken to the hospital. Ensure communication aids such as hearing aids, glasses and dentures are taken. If possible take some of the patient s belongings, especially anything that may be significant or that the patient is mentioning e.g. life story book, comforter or photo, and ensure they are kept safely. Always take the carer or a significant other with the patient in the ambulance. Why evidence base and outcome The patient is likely to be less distressed if they are accompanied by their carer and have some familiar belongings with them. This will ensure the patient maintains their dignity. This maximises patient and staff safety. This improves the environment for A&E staff and the ambulance crew. 17 Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

59 Action 3: Arrive at A&E/urgent care centre Ambulance staff must ensure hand over of the London Ambulance Service standardised patient sheet to an A&E/urgent care centre triage nurse. Why evidence base and outcome The information collected will improve immediate care delivery to the patient. A&E/urgent care centre staff will immediately act on the information you have provided. This will avoid repetition of questioning which can lead to agitation and distress. Patients will receive a smoother journey along the care pathway. General hospital care pathway Action 4: Triage immediate emergency treatment carried out Does this person display signs and symptoms of delirium? Has this person got a known diagnosis of dementia or cognitive impairment? Ask carer or significant other about the background of the patient and their functional ability. If there is no carer present contact them (paid professional or informal). Contact the GP and ask for the encounter record and recorded Read codes, this will provide the patient s history. Check how many times this patient has attended A&E/urgent care centre during the past year. Enter the ICD-10 code for delirium or known dementia diagnosis on the IT system and the suspected differential diagnosis (see appendix 12) this must be completed by the doctor after the completed episode. Why evidence base and outcome The patient with dementia may not be able to tell you key information which you need to decide the next stage of their care. The carer will be able to give key information that affects the future management of the patient Although hospital admission is not always appropriate the patient may need a physical, functional, social and cognitive review in the community, which would not be done unless you request it. Efficient recording of delirium episodes will result in an improved dementia diagnosis which will enable enhanced services to be developed. Dementia services guide 57

60 General hospital care pathway Action 5: Dementia skilled healthcare professional This is a healthcare worker who has had additional dementia training, it could be a healthcare assistant. There is further detail about this role in the workforce competencies see appendices 3 and 5. Why evidence base and outcome This professional will give advice on: how to communicate with the patient behavioural techniques if the patient is distressed and behaving in a way that is disturbing other patients any legal requirements you should be aware of how to get support for yourself. There are communication tools and other interventions that can reduce the agitation and distress of the patient. By consulting with the dementia skilled healthcare professional you will be more proficient to effectively treat the patient. Action 6: Move patient to a bed Ensure the patient is settled in a side room or quiet bay. Ensure there is low stimulation and low noise. Ensure the patient has their important personal belongings with them (e.g. dentures, hand bag, etc). Why evidence base and outcome Patients with a diagnosis of dementia or who have cognitive impairment will benefit from calm surroundings. A quiet environment will reduce the likelihood of agitated behaviour which may distress the patient, other patients, and staff. Anecdotal evidence suggests that patients may become agitated when they are not holding personal belongings and are unable to tell staff they are missing them. 58 Healthcare for London

61 Action 7: Assessment and evaluation Liaise with the carer. Liaise with the GP and/or practice nurse. Liaise with community staff, dementia adviser and mental health services. Focus on contacting the CMHT care coordinator. Contact the specialist older people s mental health liaison team for advice. Why evidence base and outcome The person with dementia may not be able to tell you important information which you need to decide the next stage of their care. The carer and other healthcare professionals will be able to give the key information that affects the future management of the patient. Through acting on this information patients will receive better quality care. The National Dementia Strategy 18 states that all general hospitals should have specialist liaison teams for older people s mental health in line with NICE/SCIE guideline 19. General hospital care pathway 18 Department of Health. Living well with dementia: A National Dementia Strategy, NICE-SCIE. Dementia: Supporting people with dementia and their carers in health and social care, 2006 Dementia services guide 59

62 General hospital care pathway Action 8: Clear treatment plan leading to admission or discharge Does this person need to be in hospital? Is there a more suitable environment such as step down intermediate care that would be more appropriate? Is it possible to offer, with local authority services, a home-based intensive or personalised care support package? Ensure social care needs are integrated into the treatment plan. On discharge, do you suspect this person has dementia? If so, suggest to their carer that they attend the local memory service. Should you consider a referral to a memory service or a secondary care service yourself? Have you discussed this with the patient or carer? Give the patient and carer information about the local memory service, social services and other local (perhaps voluntary) support networks. Why evidence base and outcome The person with dementia may not cope well in a hospital environment. This could lead to distress and a possible reduction in functioning which may prevent them from being discharged to their usual residence. An alternative to admission may be better e.g. a home-based intensive care package or step down intermediate care. Older people admitted with physical symptoms may have the beginnings of dementia, especially if they have a record of regular attendances at A&E. This is an opportunity to identify this and support the patient and family to attend a memory service. The National Dementia Strategy focuses on early identification of dementia. Evidence shows that patients and carers welcome early identification and diagnosis as it enables them to plan for the future together before the patient s functioning prevents this 20. Provide the GP with the treatment information as the hospital doctor may be a locum and may not know the local area or the services that are offered. 20 Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

63 Action 9: Pre-assessment clinic Talk to the patient s carer, relative or significant other. Obtain the patient s encounter record from the GP. Check that the patient understands what is going to happen. Ask the carer to explain if the patient does not understand. Involve the occupational therapist at this stage to assess communication and functioning. Carry out Mini Mental State Examination (MMSE). Interpret the results in the context of the patient s functioning levels throughout their life. For example, an academic may have quite a high MMSE although he or she may have significant cognitive deficits because their adult life MMSE may have been very high compared to the average population. Make any complex decisions with experience and care drawing on all the assessment information you have available. Ask someone more experienced to take over if you feel this patient s care is beyond your competencies decisions you make now may affect their future care and quality of life. Ensure social care needs have been integrated into the treatment plan. These may include housing, daily living support and carer support. Consider a referral to a memory service or a secondary care service yourself. Discuss this with the patient or carer. Give the patient and carer information about the local memory service, social services and other local (perhaps voluntary) support networks. Inform the GP as the GP will usually make the referral. General hospital care pathway Why evidence base and outcome The patient may be anxious about the visit and about what will happen at the next stage. They may not be able to tell you this. The person with dementia may not be able to tell you key bits of information which you will need for deciding the next stage of their care. They may be finding it hard if they are distressed or in pain. If they are not able to answer always seek corroborating evidence or information. The carer and other healthcare professionals will be able to inform you of the important information that affects the future management of the patient and may determine the quality of physical healthcare they receive. The National Dementia Strategy focuses on early identification of dementia. Evidence shows that patients and carers welcome early identification and diagnosis as it enables them to plan for the future together before the patient s functioning prevents this 21. Provide the GP with the treatment information as the hospital doctor may be a locum and may not know the local area or the services that are offered. 21 Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 61

64 General hospital care pathway Action 10: Move patient to ward It is imperative to get any further background information immediately. Ensure this information includes communication needs, life story books and any other key information about what is important to the patient. Contact the family, carer, GP, CMHT care coordinator, community matron, home care, social care, residential/nursing home, sheltered housing support worker etc. Use an agreed information pro forma it may prompt you to ask questions relevant to someone with dementia that you might not think of, and which might make a difference to the patient s comfort and experience on the ward. An example can be found in appendix 13. Why evidence base and outcome The patient may not be able to convey what they prefer to be called. Background information may improve the outcomes of physical care. Alternative methods of communication may be required to get the patient to engage successfully with treatment or rehabilitation. Any delay in obtaining background information decreases the likelihood of good recovery and increases the length of stay. This could lead to poor health and functional outcomes and also poor patient and carer satisfaction. Action 11: Allocate bed and ensure patient is comfortable Ensure the patient is settled in a side room or quiet bay. Ensure there is low stimulation and low noise. Ensure the patient has their important personal belongings with them (e.g. dentures, hearing aid, spectacles, handbag and other personal possessions) and ensure that these are kept safe. Why evidence base and outcome A quiet environment will enable the patient to settle, reducing the likelihood of agitated behaviour which may distress the patient and other patients, as well as staff. Anecdotal evidence suggests that patients may become agitated when they are not holding personal belongings and are unable to tell staff they are missing them. 62 Healthcare for London

65 Action 12: Nursing care plan Refer to the information pro forma (see appendix 13). Ask the carer for information on all aspects of personal care. Liaise with dementia skilled healthcare professional. Why evidence base and outcome The patient may not be able to convey what they prefer to be called. Alternative methods of communication may be required to get the patient to engage successfully with treatment or rehabilitation. Background information may improve the outcomes of physical care. The patient may not openly display any feelings of anxiety or distress. However this may manifest itself in a different way, the carer will be able to give advice. General hospital care pathway Action 13: Ensure the patient is pain free Ask the carer about helpful strategies for treatment and quality care. Watch for physical signs e.g. increased agitation, facial expressions and other signs. Consider using an assessment tool. Examples can be found on the dementia portal website 22. Why evidence base and outcome Patients with dementia often receive less pain relief than other patients which is often below the optimal amount for comfort. The patient may not be able to convey when they are in pain. All patients should have their pain minimised and experience compassion in managing any pain that cannot be prevented. Patients recover quicker if their pain is properly managed Dementia services guide 63

66 General hospital care pathway Action 14: Start discharge planning Send the Section 2 form to social services. Discuss with the carer about the patient s discharge and check if they have any concerns. Involve the occupational therapist/physiotherapist as soon as possible. Link in with the voluntary sector. Refer to the hospital dementia service. Why evidence base and outcome This will minimise the length of stay and prevent difficulties when discharge is imminent but the carer feels unable to accept the patient home. Action 15: A&E/urgent care centre assessment or discharge notification sent to GP Ensure social care needs are integrated into the treatment plan. On discharge do you suspect this person has dementia? If so, suggest to their carer and GP that they attend the local memory service. Give the patient and carer information about the local memory service, social services and other local (perhaps voluntary) support networks. Fax the letter to the GP on the same day; do not give the GP letter to the patient. Involve the social care and physical health rapid response services. Why evidence base and outcome Older people admitted with physical symptoms may have the beginnings of dementia, especially if they have a record of regular attendances at A&E. This is an opportunity to identify dementia and support the patient and family to attend a memory service. The National Dementia Strategy focuses on early identification of dementia. Evidence shows that patients and carers welcome early identification and diagnosis as it enables them to plan for the future together before the patient s functioning prevents this 23. Provide the GP with the treatment information as the hospital doctor may be locum and may not know the local area or the services that are offered. By faxing the letter to the GP on the same day, a community nurse can visit the next day to reassess the home environment. This may help prevent re-attendance at A&E/urgent care centre within a few days of discharge. 23 Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

67 Action 16: Complex discharge planning Send the Section 2 form to social services. Ensure the social care assessment takes place in the hospital. Ensure discharge planning is dementia specific and meets the needs of someone suffering from dementia. Ensure a carer s assessment has been carried out. Discuss early with the carer how they feel about the patient going home. Ensure the carer s needs are included in the multi-disciplinary team planning process. Provide a copy of the statement of care including the plans for what to do in physical or psychological crises. It will enable the patient to be treated at home where possible. Consider use of discharge to a stepped down rehabilitation unit. General hospital care pathway Why evidence base and outcome This will minimise the length of stay and prevent difficulties when discharge is imminent but the carer feels unable to accept the patient home. Carers and family have been known to refuse to have the patient home on the day of discharge because they have not been coping (hence admission to hospital) and no one has asked them about their caring difficulties. The carer will know what is needed to ensure the discharge is successful. Evidence shows that some people with dementia are denied the rehabilitation that they require to reach maximum functional and quality of life potential. There is a misconception that people with dementia cannot engage in rehabilitation. Clinical evidence shows this is not the case. Objective 9 of the National Dementia Strategy 24 suggests best practice for ensuring equitable access to rehabilitation for people with dementia. Action 17: Admit to residential home Discharge the patient with clear nursing plans for the future especially around end-of-life care and a management plan for future deterioration. This should be based on input from previous planning when the patient was first diagnosed along with input from the carer. Why evidence base and outcome Plans will prevent distress about further admissions for the carer and patient when they are nearing the end of their life. 24 Department of Health. Living well with dementia: A National Dementia Strategy, 2009 Dementia services guide 65

68 General hospital care pathway 3.4 Good practice for workforce competencies Older people have told Age Concern s Quality Care Campaign 25 that being treated with dignity means: being treated as a person, not as a set of care needs having the care I want, not the care you think I need wanting to get a minimum quality of care regardless of who pays for it. A more detailed description of the workforce competencies required across the general care pathway for dementia can be found in appendix 3. Clinical leadership in general hospitals In order to improve the quality of care for people in general hospitals the National Dementia Strategy suggests that a senior clinician in the hospital should take the lead for quality improvement in dementia care in the hospital 26. A role description has been developed for this function and can be found in appendix Outcomes Keys outcomes have been identified for the general hospital care pathway. 1 Improving access from general hospitals to specialist older people s psychiatric liaison services. The National Dementia Strategy states that these services should be available in all general hospitals. It is recommended that the service should comprise of part-time consultant older people s psychiatrist, a junior doctor, two other healthcare professionals and administration support per 100,000 of the population. 2 Improved nursing care for all people with dementia should be available. In order to achieve this it is recommended that all nurses receive an induction in caring for people with dementia, and nurses working in older people s wards receive three-yearly training in caring for people with dementia. This will lead to improved patient care, reduced stress and higher job satisfaction. 3 To improve care for all people with dementia it is recommended that all general hospitals appoint a clinical lead for dementia (see appendix 4). This will ensure that the hospital staff have strong clinical leadership in caring for people with dementia and evidence that the board support improvements in care. See appendix 8 for a full list of outcomes Department of Health. Living well with dementia: A National Dementia Strategy, Healthcare for London

69 3.6 Conclusions and recommendations for implementation The National Dementia Strategy describes a number of enablers for implementing the strategy 27. There are some key actions specific to London, which the health and social care community will need to carry out to deliver improved healthcare, social care and patient/carer experience for people admitted to general hospitals with cognitive impairment and dementia: Ensure commissioners can identify best practice when commissioning hospital services for dementia. Encourage a coordinated procurement plan and work across the different elements of care, traditionally approached as silos of physical health, social care, mental healthcare and care for older people. London s acute commissioning units can facilitate the challenge of commissioning joined up services by incorporating the local intelligence of their local practice-based commissioners. Ensure the performance management matrices and other performance metrics are aligned, for example: NHS London Local Area Agreements Commissioning for Quality and Innovation (CQuIN) Patient Reported Outcome Measures (PROMS) Care Quality Commission (CQC) regulatory body. Local PCTs and providers to agree to develop joined up information systems, for example, allowing general hospitals to access mental health providers and social care patient information out of hours. Improve recording of dementia on the QOF, in HES data, in the mental health minimum data set and link the three. Ensure contracts with general hospital providers are aligned with the performance matrices and also ensure dementia care is featured (e.g. state that all patients on dementia QOF must be offered a seat in the patient transport for outpatient appointments). Ensure workforce competencies in the general hospital are clearly defined for caring for people with dementia and involving their carers. Align these competencies with general nursing and other health professional training in London and include them in induction courses and other mandatory training. Ensure board-level support to the principles of improving dementia through implementing these recommendations for PCTs as commissioning agents and with health and social care provider organisations. General hospital care pathway The evaluation of the implementation of the pathway and the impact on patient care can be assessed through the Royal College of Psychiatry sentinel audit Department of Health. Living well with dementia: A National Dementia Strategy, Dementia services guide 67

70 General hospital care pathway 68 Healthcare for London

71 Memory services Memory services 4 Dementia services guide 69

72 Memory services How to use this guide This guide has been separated into two parts to provide NHS and local authority commissioners and their partners with direct access to material that will help with the development of a bespoke approach to commissioning memory services. The first section directs commissioners to national materials and other Healthcare for London information about best practice and needs assessment. The second part contains an example specification for commissioners. The entire contents of this may not be useful to everyone but parts of it will be for the construction of local agreements and service definitions. Healthcare for London would like to thank Westminster Primary Care Trust for permitting the use of their draft commissioning specification for memory services which provided an outline of the information that would be required. 70 Healthcare for London

73 Introduction This is a guidance paper for commissioners and is not intended to be prescriptive nor is it a format for a specification. The commissioning of memory services for early diagnosis and intervention for dementia is estimated to cost around 220 million extra per year nationally in England 1. The approximate savings if 10% of care home admissions were prevented would by year 10 be around 120 million in public expenditure and 125 million in private expenditure; a total of 245 million. Under a 20% reduction, the annual cost would, within around six years, be offset by the savings to public funds alone. In 10 years everyone with dementia will have the chance to be seen by the new services. A gain of between 0.01 and 0.02 Quality Adjusted Life Years (QALYS) per person per year would be sufficient to render the service cost-effective (in terms of positive net present value). These relatively small improvements are likely to be achievable. Memory services 4.1 National and regional information NHS standard contracts A specification for memory services will need to comply with the introduction of standard contract documentation for the NHS. In 2008 an acute contract was introduced and there will be a standard NHS mental health contract from 2010/11. This contract will be mandatory for all providers wishing to deliver mental health services under NHS contracts including the third sector. More information can be found on the Department of Health s website in the standard NHS contracts for acute hospital, mental health, community and ambulance services and supporting guidance. 1 Banerjee, S and Wittenberg, R. Clinical and cost effectiveness of services for early diagnosis and intervention in dementia, 2009 Dementia services guide 71

74 Memory services Needs assessment London-wide and by PCT Healthcare for London has produced a comprehensive and detailed needs assessment (appendix 1) for the capital which: describes the population at risk of dementia, highlighting particular characteristics relevant to London estimates the current incidence and prevalence of dementia forecasts future incidence and prevalence summarises key service requirements as laid out in the national dementia strategy and considers the implications for London. The needs assessment gives detailed population and epidemiological information for London which can be examined at PCT level; it includes information relating to health and social care. Any local commissioning specification for memory services should be informed by this needs assessment. Local needs assessment As described above this is available in appendix 1 and the local joint strategic needs assessments may give further information. Any output will need to cross reference with this and be signed off by the Local Strategic Partnership (LSP) or other equivalent governing arrangements. Figure 1: Total number of patients with dementia by London PCT, 2007 Early and late-onset dementia Numbers by PCT 2,780 to 3,810 (5) 2,290 to 2,760 (7) 1,770 to 2,290 (5) 1,470 to 1,770 (7) 1,170 to 1,470 (7) 72 Healthcare for London

75 4.2 Specifying a memory service The term dementia is used to describe a syndrome in which there is progressive decline in multiple areas of function, including memory, communication skills and the ability to carry out daily activities. Alongside this decline, individuals may develop behavioural and psychological symptoms such as depression and psychosis which complicate care. There are approximately 65,000 people in London with dementia which accounts for the biggest proportion of mental health expenditure. Current access to early identification, assessment and treatment is inequitable and poor, with people aged less than 65 years struggling to access services. The recently released Living Well with Dementia: A National Dementia Strategy outlines the importance of improving care and support for people with dementia and their carers. More detailed information is available in the introduction section of this guide. Memory services A care pathway approach It is recommended that any commissioning specification for memory services should be informed by a care pathway approach. The integrated care pathway developed by Healthcare for London can be found in section 2 of this guide. Current models of memory services in London Commissioners looking to gain insight into best practice are directed to review the work in Croydon, Newham and the developing work in Lambeth. The Croydon memory service has doubled the number of dementia assessments and helped overcome the stigma attached to referral for dementia. It is an integrated service that offers a comprehensive assessment and diagnosis and enables a high patient throughput. Assessments are carried out with both the patient and unpaid carer at their home and a plan is discussed at a multi-disciplinary team meeting to help maintain the patient s independence and quality of life. NHS Lambeth is commissioning a joint physical health/cognitive clinic as one of the implementation sites at St Thomas' Hospital while NHS Newham have commissioned a diagnostic memory clinic, in which they have developed a multi-disciplinary formula for working with patients and carers that focuses on assessment findings, breaking bad news and follow-up care coordination and early intervention arrangements. Newham has also engaged in targeted screening using an over the phone triage cognitive screening tool which gives a Mini Mental State Examination (MMSE) equivalent score. This has proved very acceptable to patients. Healthcare for London has undertaken a mapping exercise of dementia memory services across London which can also inform commissioner requirements (see appendix 11). Recommendations from this mapping exercise include the following: Prepare a service description for each borough, using a standard structure and language, showing the responsibilities and relationships at all stages of the patient s journey. Ensure service descriptions are readily accessible through search facilities on PCT, trust and local authority websites. Ensure service descriptions are linked to the NHS Choices website, where there is good quality, reliable general dementia information. Dementia services guide 73

76 Memory services All GPs, healthcare professionals, and social workers should be educated in the structure of dementia services and access protocols. Develop standard risk profiling guidance for GPs, A&E departments and polyclinics. Ensure standard levels of education and training are available to all community/primary care staff. Develop standard awareness training frameworks for third sector workers. Ensure all documentation makes appropriate distinctions between those with and without associated behavioural problems. Provide guidance for dealing with early-onset dementia. Link healthy lifestyle promotion with cognitive health using non-stigmatising terminology such as Keeping your brain active. All GPs and primary care professionals to be provided with up to date information and guidelines on dementia treatment and assessment tools available. Financial information The National Institute for Health and Clinical Excellence (NICE) has developed a tool that enables commissioners to estimate the level of service needed locally, as well as the cost of local commissioning decisions. The tool covers the following: current inpatient activity commissioned from secondary care population selection benchmark activity current activity recurrent costs planned activity recurrent costs planned activity non-recurrent costs notes and source of unit costs. The tool populates a cost which can be re-calculated by locally adjusting population figures for each PCT. However, commissioners will need to adjust these costs depending on their circumstances. The tool can be found on the NICE website 2. Healthcare for London has undertaken an investigation into the cost of dementia in London and the savings needed to ensure investment in memory services is cost neutral. Further information on this can be found in appendix Healthcare for London

77 Financial analysis The needs assessment (appendix 1) contains useful figures relating to the cost of establishing a memory service which can be adopted for local use. However, commissioners and providers will need to structure their service according to local needs. Figure 2: The indicative additional resources modelled for a PCT with a population of 50,000 people aged Memory services Service Memory services (five day a week service with referrals a year) Support for existing CMHTs for older people Enhancement of social care services for older people with mental health problems Indicative staff requirement for 50,000 people aged wte doctors 3.0 wte nurses 1.0 wte psychologist 2.0 wte care managers 1.0 wte occupational therapist 1.5 wte administrators 0.5 wte doctors 2.0 wte nurses 1.0 wte psychologist 2.0 wte care managers 1.0 wte occupational therapist 1.0 wte administrator 7.0 wte care managers Cost 600,000 pa for an average PCT 95 million pa nationally 460,000 pa for an average PCT 70 million pa nationally 360,000 pa for an average local authority with adult social services responsibilities 55 million pa nationally 4.3 Example commissioning specification for a memory service The following pages contain an example commissioning specification for a memory service. The example is a suggested approach, not prescriptive and should be adapted for local use. It is adapted from Westminster PCT s draft commissioning specification. 3 Source: Banerjee and Wittenburg 2008 Dementia services guide 75

78 Memory services Example service specification Memory service Scope The majority of people living with dementia receive little specialist assessment or care throughout their illness. There is evidence that memory services offer demonstrably improved health and social care outcomes as a result of early identification and intervention. It is argued that a memory service provides a suitable setting to generate an early diagnosis, which can enable choice and forward planning while people have capacity 4. The challenge is to provide a service which is easy and quick to access, supportive, respectful of older people s rights and integrated with early intervention services. It should be able to offer home assessment, enable understanding, address fears and worries, help build coping strategies, provide pharmacological treatment, and provide or facilitate access to psychological and social interventions and to advocacy services. It is recommended that a memory service is an integrated service which is effectively a starting point for professionals, patients and their carers and families. It should have a multi-disciplinary team and should not exist as only a health service and should have other core functions which include care and support for the relatives and their carers. The successful operation of any memory service is dependent on the interaction with other services designed to support people living with dementia. This includes other services provided or commissioned by the NHS and local authorities, including those from the independent sector. The dementia care adviser role is important to the operation of any memory service as this role will work with staff at memory services to ensure a seamless service for signposting people newly diagnosed with dementia and their carers (see appendix 5). Memory services offer both an assessment and diagnosis of dementia and support early identification. They should also engage with people living with dementia and their carers. As such, the service should have an operational policy and plans will need to show how key service components will be delivered: Early intervention will enable people to better plan for and manage their condition and remain in their own homes for as long as possible. The service will offer a range of diagnostic, therapeutic and rehabilitative services via a single assessment process. The service will support better individual care planning and more effective support for families and carers. The service will be defined locally in line with clinical engagement, current services and local population needs. Referrals will be accepted from any source, although the process of open referral should be defined locally. The memory service will work particularly closely with GPs to support local practice awareness and detection of dementia and the timely referral of people to the service. Best practice suggests that GPs could also carry out early routine investigations, excluding physical conditions which may impact on 4 Banerjee, S and Wittenberg, R. Clinical and cost effectiveness of services for early diagnosis and intervention in dementia, Healthcare for London

79 functioning, for example haematology, biochemistry and basic neurocognitive screening. This would enable the results to be at the memory services in time for the patient s first visit. Referrers will need to provide information pertaining to medical history, a copy of the patient encounter record if possible, current medication and presenting problems. Inclusion criteria Referral should be made when a healthcare professional has identified that there is a memory problem. The purpose of the memory service is not to screen populations but to assess those with memory loss. Memory services People will be referred and will be accepted if they meet the following criteria. The person is a resident from a London borough and registered with a GP belonging to a London PCT. The service is primarily for the diagnosis of dementia and as such, patients referred to the service should present with symptoms consistent with suspected dementia rather than a physical or functional mental illness. The patient may have an existing diagnosis of dementia yet require further referral and signposting according to need. The person does not already have an existing clinical diagnosis of dementia nor is the person currently under the care of a specialist older adult mental health team. The service will be needs led and for people across the age range. It is likely that younger adults will receive a more appropriate service (where commissioned) from an early-onset dementia service as this requires different systems of support. Exclusion criteria The following criteria excludes a person from being admitted to the service. People reporting memory problems following a traumatic head injury are inappropriate for the memory service, and should be referred to specialist neurological services, neuropsychiatry services and local authority brain injury services. People with an existing diagnosis of dementia made by an appropriate clinician, who are already under the care of a specialist older adult mental health team. In all cases the memory service will be required to make a judgement as to whether it is the most clinically appropriate service to deal with the presenting situation or whether the referral, should be routed to another service. Where there is uncertainty about the most appropriate referral the memory service must ensure that the person receives an assessment of need. Where it is felt that the referral would best be dealt with elsewhere, the transfer of the referral should be conducted well e.g. urgent behavioural problems. At all times services need to be mindful of the balance between the clinical need and the dependency. Dementia services guide 77

80 Memory services Service description Aims The key components of a memory service should be: outreach, where appropriate, to support early identification of dementia assessment and diagnosis carried out well diagnosis communicated to the person well good initial interventions to support and start planning for people with dementia and their carers. The memory service will: be the single point of referral for all people with a possible diagnosis of dementia be provided by a multi-disciplinary and multi-agency team offer a responsive service to aid early identification and include: assessment and diagnostics good communication when giving the diagnosis immediate care support and interventions that carers need, for example information on medication, group therapy and carer support. ensure an integrated approach to the care of people with dementia and the support of their carers, in partnership with local healthcare, social care and independent organisations ensure carers and family are involved at the initial assessment and in care planning for the person with dementia ensure relevant information in a variety of formats is available to people living with dementia and their carers. The memory service will work with primary care to facilitate referrals and understanding of what the service offers, and will support primary care to focus on dementia. The memory service is primarily for the early diagnosis and intervention in progressive dementia, across age groups and across all types of dementia. The memory service is intended to: maximise wellbeing offer a clear pathway to care and support enable people to stay at home for longer avoid crisis admissions to acute hospitals and residential or nursing homes reduce avoidable use of long-term care maximise independent living. 78 Healthcare for London

81 The following are the principle service objectives. These should be reviewed formally after the first year of full service operation: early diagnosis early intervention and treatment a care pathway into assessment, diagnosis and initial support inclusive of a carers needs assessment a clear pathway to specialist services, where appropriate early access to therapeutic intervention with social, psychological, and pharmacological interventions close liaison and support to GPs close liaison with the voluntary sector and other relevant commissioned services earlier prescription of anti-dementia drugs the provision of both education and an outreach function counselling provided both before and after diagnosis monitoring the clinical efficacy of anti-dementia drugs reducing any under diagnosis of dementia. Memory services Assessment procedures Initial assessment A multi-disciplinary assessment will be completed as early as possible. The assessment will be completed within two weeks of acceptance and it will involve the individual and their carer (if appropriate). A full assessment plus clinical history will be completed in the individual s home where possible and a history will be obtained from a carer. The assessment will include: cognition everyday living skills psychiatric symptoms carer stress mood quality of life physical health medication review. For more complex presentations further assessments will be requested (e.g. cranial head MRI, CT scan or a detailed neuropsychological assessment). A comprehensive report will be provided describing the probable diagnosis and recommending a plan for further action. This will also be shared with the individual and their carer. Dementia services guide 79

82 Memory services Formulation/diagnosis The multi-disciplinary team will examine the patient s assessment results in detail. The team will agree on the diagnosis, available treatment options including medical, psychological and social care interventions. The team will then be able to produce a care plan, please refer to the integrated care pathway in section 2. Upon receipt of detailed assessment results, the individual s case will be discussed by the multi-disciplinary team and an agreement will be reached regarding the diagnosis, available treatment options (including medical, psychological and social care interventions). This will enable the team to produce a care plan (see section 2). The ICD-10 diagnosis will also be recorded. Feedback The individual will be contacted by a key worker to discuss the initial assessment. The key worker will review: initial general assessment any specialist assessments required (e.g. MRI, neuropsychological or occupational therapy assessment) if applicable, appropriate ICD-10 diagnosis possible management strategies (including anti-dementia medication). Following the meeting a summary will be sent to the individual and copied to the initial referrer. At future follow-up sessions and at each decision point, the patient and their carer will be given reliable information about the diagnosis, treatment and care plan. Care planning, coordination and care management processes Including risk assessment and outcome measurement. This role will be coordinated by the dementia adviser. See appendix 5 for dementia adviser role description. Care and treatment interventions, including intensity Pharmacological treatment It is important that any care is targeted appropriately and the identification and subsequent prescribing of anti-dementia drugs to people with moderate Alzheimer s type dementia is improved. If effective shared care protocols are in place, GPs and the team s prescribing clinicians should adhere to the NICE guidelines. The memory service team will review and monitor the efficacy of anti-dementia medication as per NICE guidelines or support primary care to do this. It is recognised that for some people with dementia and their carers the cessation of these drugs, when their clinical usefulness is completed, can be a traumatic process. 80 Healthcare for London

83 Practice process In cases where an individual is experiencing memory difficulties consistent with dementia of an Alzheimer s type (F00.0, F00.1, F00.2), the team psychiatrist should determine the patient s potential suitability for anti-dementia medication in accordance with NICE guidelines. If medication is deemed potentially suitable the key worker will discuss this with the individual and their carer and ensure that: an appropriate set of recent blood results is obtained (no older than three months) an ECG trace is obtained plus BP/pulse all other physical health preparations are known so that drug interaction can be prevented anti-dementia medication is not prescribed if bradycardia (pulse rate below 50 bpm) is indicated close monitoring would be indicated with a pulse rate of between bpm an expert cardiology opinion is sought by referral via a GP if required compliance with medication is indicated (either carer or other mechanism in place) medication can be supported, e.g. dosette boxes, bubble packs, personalised care direct payment packages for medication delivery and administration. Memory services Social care Social care assessment, resource allocation and care planning is a core part of the team s activity. Specific social care tasks Assessment of need, resource allocation and support planning. Case management coordination of assessment, provision and review. Carer s assessment and carer support. Direct commissioning of local support services. Support in managing individual budgets. Referral to brokerage (to facilitate choice). Risk management person with dementia/carer support with managing risk. Assistive technology engagement with London Borough Council s Assisted Living (ALIP) program to deliver technology to support people remaining in their own homes. Dementia services guide 81

84 Memory services Social care interventions Fair access to care eligibility criteria will be used if a social care needs assessment in the memory service is required. Where it is agreed that the person has met these criteria, any qualified member of the memory service will be able to complete the relevant assessment documents and recommend an individual package of care. Key relationships with other agencies Relationships between the memory service and other agencies should reflect a multi-agency approach in service provision to enable links across all providers to be made. Input from the social sector The memory service social worker should have effective liaison arrangements in place with the Older Person s Community Mental Health Team (OPCMHT) and London Borough Council s Adult Services Department. The memory service will access the OPCMHT budget for community services. Input from the voluntary sector The London Borough Council benefits from a number of voluntary sector resources which provide sign posting, advice and direct provision. People with dementia and their carers will be referred, as appropriate, to voluntary sector partners for information, advice, and carer support. Interface with neurological services The memory service should agree a protocol with local neurological services and with the PCT commissioners and providers of tertiary specialist neuropsychiatry and neuropsychology services, and also with local authority commissioned brain injury and early-onset dementia services. This protocol will be based on the principle that the there needs to be local clarity about the optimal routes of referral for those people with early-onset memory loss and dementia, and also for people with more complex and hard to diagnose conditions, often where there are co-morbidities present. The memory service will work to provide services for less complex dementia, but will need to seek further diagnosis/assessment from local neurological services, tertiary specialist neuropsychiatry and neuropsychology services for complex dementia, early-onset dementia or to resolve unclear presentations. Commissioners will need to ensure these services provide assessment and there are local agreed arrangements for community support and longer term personalised care packages provided by services with certain expertise and competencies. 82 Healthcare for London

85 Service delivery Location It is important to consider different locations for the memory service for example, community centres, GP practices and polyclinics. Figure 3: Memory service location template Memory services Base name Phone number Other contact detail (fax and addresses) Address Postcode Operating hours Within the memory service s operational policy, the operating hours of the service should reflect its location and the needs of the local community to ensure ease of access. Personnel It is recommended that the following healthcare professionals be included in the team, this will also indicate towards the likely cost of service. Figure 4: Memory service staff Staff Team manager Consultant psychiatrist (clinical supervision and diagnosis) Staff grade psychiatrist Clinical psychologist Assistant psychologist Social worker Dementia nurse specialist Occupational therapist Dementia adviser Team administrator Number NHS band 8a MH01 8a 5 N/A Dementia services guide 83

86 Memory services Training and development Staff development All staff should have an individual review, an annual appraisal and a personal development plan with review at agreed intervals. A policy should be in place to support this. Where staff are managed by an individual from a different profession, an opportunity for a review with the senior member of the same profession should be made. There should also be access to regular (no less than monthly) supervision. Staff should have access to Continuing Professional Development (CPD) opportunities and the necessary support in relevant specialist areas, which includes multi-disciplinary training and education in the team. The expectation of the service to offer training to other groups, for example GPs and social workers should be taken into consideration. All staff should be involved in the audit and, where possible, research if an opportunity arises. All staff are expected to maintain their professional registration and standards and demonstrate their contribution to a service that is evidence based, clinically effective and meets appropriate clinical guidelines. Clear policies should be in place to ensure staff maintain and develop their specialist skills and knowledge. These policies should include: access to specialist journals, textbooks and databases time allocated for regular training support to attend conferences and courses in the field of special expertise. Supervision and leadership arrangements These should be defined locally and conform to each profession s standards for supervision and to the provider supervision policy, with clear documentation and recording e.g. on the staff electronic records. Referral process, including triage and response times It is envisaged that the referral process will be open referral but this will need to be defined locally. Discharge process, including transfer of care arrangements The person will remain on the active caseload of the memory service whilst they are in receipt of any service offered by the team. If the person is no longer in receipt of a service and their needs have been met, they will be discharged to the care of their GP and a letter will be written to the GP outlining the discharge summary together with recommendations of where to seek advice and support in the future. A letter will also be written to the person with dementia, their carer and primary care explaining the reasons for the discharge and explaining where to seek advice from should they experience further difficulties or problems in the future. 84 Healthcare for London

87 Transfer to secondary or specialist mental health services If the person s condition is unpredictable, volatile or complex they will be transferred to the appropriate OPCMHT. In this instance the following protocol should be adhered to: discuss difficulties experienced by the person with dementia with the team communicate with the appropriate CMHT if an emergency refer via the appropriate team duty system if non-emergency refer via letter to appropriate team manager once referral is accepted by CMHT, communicate the decision to the person with dementia and their carer complete required documentation on the electronic patient record. Memory services Service monitoring, including quality standards Patient experience and involvement There should be clear evidence of the person with dementia and their carers being involved in agreeing the treatment plan at all stages. Patient and carer surveys should be carried out at agreed intervals to provide feedback on the service. Changes should be implemented in line with the feedback received. The provider is expected to demonstrate performance against the metrics outlined below for the person with dementia s experience of services. Access and waiting: Patients have good access to services and waiting times are short. Safe, high quality, coordinated care: Patients are receiving safe, high quality, effective and coordinated care. Building closer relationships: Patients have built relationships with their healthcare professional/frontline member of staff, have been treated with respect and dignity and their individual requirements have been taken into account. Better information, more choice: Patients feel informed and have a choice in decisions regarding their health. A discharge letter will also be sent to the patient, their carer and primary care with details of who to contact if they need help in the future. Clean, friendly and comfortable place to be: Patients are treated in a comfortable, clean and friendly environment. Dementia services guide 85

88 Memory services Other requirements The provider is required to report any form of user involvement activity in the Involving People Activity Database on a quarterly basis to the PCT. The provider is required to conduct an annual patient survey exercise, such as Ask Your Patient Week, and to submit results and actions being undertaken in response to findings to the PCT. The provider is required to comply with legislation in relation to patient and public involvement, disability rights, Care Quality Commission (CQC) registration and periodic review, and to undertake thorough involvement/consultation when making changes to services. The provider is required to develop a robust action plan to ensure year on year improvements to self reported patient experience, including demonstrating action taken as a direct result of patient feedback. (Please note that the above may require local adjustment) Service quality and clinical governance standards Service quality and governance reports should be returned at each quarter including the national and local requirements. Monitoring and evaluation It is recommended that monitoring meetings for the service performance should take place quarterly, and more frequently if an exception arises such as a complaint or adverse incident. The monitoring meeting will discuss activity and outcomes, performance, and the service quality and clinical governance report which should be submitted two weeks before the agreed date. On an annual basis the provider will need to submit to the PCT a written report outlining patient and public involvement activity throughout the year, demonstrating, with evidence from patient and carer feedback, and how well the organisation has performed against its outcomes. This report should also demonstrate how the organisation has consulted with the local population on decisions and changes to services, what they have said and how the organisation has acted upon this feedback. Continual service improvement Our vision is for an NHS where teams consistently measure what they do, using good and timely information as a basis both to improve the care they provide and to compare themselves with other teams. Measurement should guide local innovation and improvement efforts it is not an end in itself, only a means to the end of better quality care. At the same time, patients should be able to use some of this information to have greater control over their care and support decisions they make with their clinicians. [Department of Health 2008] As part of the monitoring and evaluation procedures the service will need to develop a plan to agree measurements for continuous improvement. 86 Healthcare for London

89 Key outcomes Key outcomes for memory services include early intervention and an informed diagnosis. An increase in the number of people referred to or self-referring to memory services will result in more accurate reporting of dementia, which will allow for better planning of dementia care across London. It will also reduce inappropriate institutionalisation and allow planning of home-based services. Providing people with dementia with an informed diagnosis and ensuring this is recorded on the Quality and Outcomes Framework (QOF) register will again assist with more accurate reporting of dementia and allow for better planning of dementia care across London. Memory services Dementia services guide 87

90 Memory services 88 Healthcare for London

91 List of appendices Appendix 1 Needs assessment Appendix 2 Workforce competencies for integrated care pathway Appendix 3 Workforce competencies for general hospital care pathway Appendix 4 Role description for dementia clinical lead Appendix 5 Role description for dementia adviser Appendix 6 Investigation into the cost of dementia in London and the savings needed to ensure investment in memory services is cost neutral Appendix 7 Consideration of the impact of the introduction of mental health Payment by Results (PbR) and the introduction of personalised health budgets on dementia services Appendix 8 Outcomes Appendix 9 Equality Impact Assessment Appendix 10 Memory service performance metrics Appendix 11 Memory service mapping Appendix 12 ICD-10 codes used in acute and mental healthcare Appendix 13 Patient information pro forma Appendices are available on the Healthcare for London website Dementia services guide 89

92 Acknowledgements Healthcare for London would like to extend special thanks to Dr Geraldine Strathdee, Consultant Psychiatrist, Oxleas NHS Foundation Trust and Clinical Director for the mental health project, for leading the clinical engagement of the Dementia services guide. We would also like to thank the following people for their help and expertise which enabled the development of this guide. Professor Sube Banerjee Professor of Mental Health and Ageing, Institute of Psychiatry, King s College London and Department of Health Senior Professional Advisor in Older People s Mental Health Dr Rahul Bhattachayara Specialist Registrar, Central and North West London Foundation Trust Lesley Carter London Region Dementia Lead Social Care and Partnerships, Department of Health Liz Evans Strategy Implementation Project Manager, West London Mental Health NHS Trust Dr Sandra Evans Consultant Psychiatrist, East London NHS Foundation Trust Rachael Fergusson Clinical Lead Occupational Therapist, Imperial College Healthcare NHS Trust Paul Jenkins Managing Director, North West London Commissioning Partnership Dr Mark Kinirons Consultant in General Medicine and Geriatric Medicine, Guys and St Thomas NHS Foundation Trust Maria Parsons London Centre for Dementia Care Dr Robin Powell Consultant Psychiatrist, Central and North West London Foundation Trust Sarah Rushton Head of Joint Service Development, Westminster Primary Care Trust Hasmukh Shah Carer Igor Tojcic Commissioning Manager for Mental Health, NHS Barnet Dr Julie Vowles Consultant in General Medicine and Geriatric Medicine, The Hillingdon Hospital NHS Trust Dr Jeremy Wallace Consultant Old Age Psychiatrist, South West London and St Georges Mental Health NHS Trust Dr Kris Warren Consultant in Care of the Elderly, Newham University Hospital NHS Trust 90 Healthcare for London

93

94 October Healthcare for London Portland House Stag Place London SW1E 5RS Tel: Healthcare for London is part of Commissioning Support for London an organisation established to provide clinical and business support to London NHS. document id: hfl.mh