Models of Care for Dementia

1. Models of Care for Dementia Improving experiences and outcomes for people with dementia & carers and families Edana Minghella (C) Edana Minghella 2011

2. This presentation... Shares some of our thinking in order to hear your views and ideas on • Rethinking models of care for dementia • Implications for commissioning and service delivery • Health warnings: • Not a prescription and not yet completed (C) Edana Minghella 2011

3. Where we are • A provisional model developed, updating existing models and approaches • Model links person’s experience & journey with expectations, needs, outcomes and service response • The model has informed the DH Commissioning Pack (Commissioning Framework) (C) Edana Minghella 2011

4. How we got here • Talking to commissioners, providers, staff and other experts • Listening to people with dementia & carers • Visiting services • Non-participant observation/shadowing practitioners • Reviewing good practice, policy and relevant literature (C) Edana Minghella 2011

5. What is a model of care? (C) Edana Minghella 2011

6. Why have a revised model? • Changing expectations of the people with dementia, carers, the public • Clarity of purpose for providers and commissioners • Improving and measuring outcomes • Policy changes • Resource pressures • Ongoing dissatisfaction in many instances despite important, valuable developments • Revolutions only happen when things are already changing. Things ARE changing – the time is right! (C) Edana Minghella 2011

7. Just for today, I will have a plan. I may not follow it exactly, but I will have it, thereby saving myself from three pests: hurry, indecision - and overdoing things (C) Edana Minghella 2011

8. Living with dementia: consistent themes from people living with dementia (C) Edana Minghella 2011

9. (C) Edana Minghella 2011

10. Some implications for services (1) • Giving a diagnosis with sensitivity • A range of physical, mental health, behavioural and social needs requires range of services working together • This range of services needs to be easily accessible and navigable – might need support with navigation • Person’s journey helps planning by providing indications for what, how and when to offer help proactively • Mental health and life-limiting factors are only part of the picture (C) Edana Minghella 2011

11. Some implications for services (2) • Individualised person-centred care along the whole pathway • Involvement in assessment, decisions, forward planning • Work to support living well with dementia • Recognising loss but working with hope and optimism • A proactive service • Family/carers expertise, involvement and needs • Community involvement (C) Edana Minghella 2011

12. Some implications for services (3) • Accessible support for people with dementia and their carers, that actively promotes inclusion regardless of age • Support, education and training in primary care based services • Plurality of provision including voluntary sector and non-service sector • Co-production of care and support • Training others to work preventively, anticipate needs and enable access to more specialist help when needed • Clear roles tailored to anticipate and address range of needs, including a navigator role similar to cancer care navigators • Imaginative use of existing resources & resource streams eg. personal budgets, community development fund (C) Edana Minghella 2011

13. Some implications for services (4) • THINKING ABOUT THE WHOLE SYSTEM including • Primary care • Social care • Voluntary sector • Independent sector • Non-service organisations • A range of joined up local, community-based services and options to enable people living with dementia to stay at home as long as possible, in the care of primary care • Education, training and co-production with carers • Early intervention • Limited or no use of antipsychotic medication • Information • Psychological therapies • Wellbeing services • Using creative approaches to therapy • Managing risk collaboratively and imaginatively • Advance planning and good end of life care (C) Edana Minghella 2011

14. Underpinning the model.... (C) Edana Minghella 2011

15. Understanding the person’s journey Phase 1: When memory problems have prompted me, and/or my carer/family to approach my GP (or other) with concerns Phase 2: Learning that the condition is dementia. Phase 3: Learning more about the disease, self-management, options for treatment and care, and support for me and my carers/families Phase 4: Getting the right help at the right time to live well with dementia, prevent crises, and manage together Phase 5: Getting help if it is not possible to stay at home, or if hospital care is needed Phase 6: Receiving care, compassion and support at the end of life. (C) Edana Minghella 2011

16. A commissioning framework • Recognising the dementia journey and: • outcomes for the person with dementia, and carers/families • needs underpinning these outcomes • what people can expect to be able to access and receive • workforce and skills implications • cost implications • options for commissioners to consider, in order to deliver these outcomes. (C) Edana Minghella 2011

17. Using the model in Commissioning Framework At each phase of the ‘dementia journey’, the framework sets out: • outcomes for the person with dementia, and carers/families; • needs underpinning these outcomes; • what people can expect to be able to access and receive (information, resources, services, care and support); • options for commissioners to consider, in order to deliver these outcomes. (C) Edana Minghella 2011

18. Example of applying model in DH Commissioning Framework: Outcomes Phase 1 When memory problems have prompted me, and/or my carer/family to approach my GP or other primary care practitioner with concerns. Outcomes • I am confident that my primary health care worker/GP has taken my concerns seriously. S/he understands the nature and cause of memory problems, and will refer me quickly for an appropriate assessment if needed. • I can access a range of information and guidance in the community about memory problems, and resources to support me and my family. • My GP/primary health care worker works with me to help me to stay well and live well. (C) Edana Minghella 2011

19. Example of applying model in DH Commissioning Framework: Needs Phase 1 When memory problems have prompted me, and/or my carer/family to approach my GP or other primary care practitioner with concerns. Needs • recognition • concerns taken seriously • physical causes investigated • prompt referral for memory assessment • community awareness • help with understanding with what might be going on now, what to expect next, & to plan for this (C) Edana Minghella 2011

20. Example of applying model in DH Commissioning Framework: Expectations Phase 1 When memory problems have prompted me, and/or my carer/family to approach my GP or other primary care practitioner with concerns. What people should expect • GPs and primary health care teams • have a comprehensive understanding about memory problems and dementia, and appreciate the value of early diagnosis; • are aware of the assessment & treatment options, and of the potential for living well with dementia; • know how to promote living well with dementia; • understand and recognise the role and support needs of carers •  Prompt referral and easy access to a memory service • there is access to an up to date directory of community services and support, provided in a range of media • dementia awareness is actively promoted in the local community (C) Edana Minghella 2011

21. Example of applying model in DH Commissioning Framework: Commissioning Options Phase 1 When memory problems have prompted me, and/or my carer/family to approach my GP or other primary care practitioner with concerns. Commissioningoptions • education and training for GPs and primary health care teams • general practice ‘lead’ for memory problems • Local Enhanced Service agreements • regular patient reviews • memory checks incorporated within routine health checks • memory liaison workers/dementia liaison workers • carers support workers • carers’ assessments • local directory of services • ensure easy access to memory service and specialist dementia service, as and when other needs present, which is not defined by age. • in line with Disability Discrimination Act (2005) (C) Edana Minghella 2011