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Cure care and research in English dementia policy


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I set out to make current dementia policy in England open to the public. This is the final talk to be given by me, Dr Shibley Rahman, at BPP Law School this evening, on cure, care and research.

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Cure care and research in English dementia policy

  1. 1. Cure, care and research Dr Shibley Rahman Thursday, 17 September 2015 BPP Law School, London
  2. 2. • Cure • Care • Research
  3. 3. ‘I statements’ • I have personal choice and control over the decisions that affect me. • I know that services are designed around me, my needs and my carer’s needs. • I have support that helps me live my life. • I have the knowledge to get what I need. • I live in an enabling and supportive environment where I feel valued and understood. • I have a sense of belonging and of being a valued part of family, community and civic life. • I am confident my end of life wishes will be respected. • I can expect a good death. • I know that there is research going on which will deliver a better life for people with dementia,
  4. 4. Improved public awareness and understanding of the factors which increase the risk of developing dementia and how people can reduce their risk by living more healthily. This should include a new healthy ageing campaign and access to tools such as a personalised risk assessment calculator as part of the NHS Health Check.
  5. 5. In every part of the country people with dementia having equal access to diagnosis as for other conditions, with an expectation that the national average for an initial assessment should be six weeks following a referral from a GP (where clinically appropriate), and that no one should be waiting several months for an initial assessment of dementia.
  6. 6. Every person diagnosed with dementia having meaningful care following their diagnosis, which supports them and those around them, with meaningful care being in accordance with published National Institute for Health and Care Excellence (NICE) Quality Standards.
  7. 7. Post diagnosis support should, consistent with that consensus, be renamed to life planning (immediate) and care and support (medium to longer term) for people with dementia. Barbican Consensus, 2015
  8. 8. New models of care – NHS England “Actively consider how the New Care Models might form part of the solution for the selected health and care economies, rather than trying to patch up struggling services in old ways.” (p.10)
  9. 9. Cognitive reablement • Cognitive impairments, including problems with memory, are fundamental to all dementias. • Interventions that target these cognitive deficits and the associated difficulties with activities of daily living are the subject of ever-growing interest. • Further well-designed studies of cognitive training and cognitive rehabilitation are required to provide more definitive evidence (Bahar-Fuchs, Clare and Woods, 2013).
  10. 10. Care pathways • The commissioning tool published by NICE in April 2013 enables commissioners to show how well they are performing against a range of outcome measures that together demonstrate how well the whole system is working. • Care pathways should offer choices in the type and intensity of treatment and interaction with services (Guss et al., 2014).
  11. 11. Co-morbidity • People with dementia have among the highest levels of multi- morbidity of any long-term disorder. • As with other disorders, multi-morbidity with dementia predicts poor outcomes and poor quality service response. • People with long-term chronic conditions and dementia report • fewer symptoms than do those without dementia, and undiagnosed but treatable disease has been reported in almost half of those with dementia (Banerjee, 2015). • It is this co-morbidity which, arguably, make • s living with dementia especially interesting.
  12. 12. Regulation • During 2013 and 2014, the Care Quality Commission carried out a thematic review of the care people living with dementia receive as they moved between care homes and acute hospitals (Care Quality Commission, 2014) • Overall they found more good care than poor care in the care homes and hospitals our inspectors visited.
  13. 13. Care at home Care at home is extremely important (chapter 13), not least because many prefer it. The UK Homecare Association estimates that 60% of people receiving care at home have a form of dementia (UKHCA, 2013), and yet minimum standardised training and sufficient workforce development opportunities are not commonplace.
  14. 14. With the cost of regulation increasing and the Low Pay Commission already noting that along with childcare, social care has the highest labour cost to turnover ratio in the country, many providers are in a position in which they simply cannot afford to pay the Living Wage’ (Care England, 2015).
  15. 15. All NHS staff having received training on dementia appropriate to their role. Newly appointed healthcare assistants and social care support workers.
  16. 16. All hospitals and care homes meeting agreed criteria to becoming a dementia friendly health and care setting.
  17. 17. Approximately in the UK two-thirds of people with dementia currently live in the community, but a third of people with dementia live in care homes (cited in Alzheimer’s Society, 2015). Of these, one-third live alone in their own homes (Mirando-Costillo et al., 2010).
  18. 18. Alzheimer’s Society delivering an additional 3 million Dementia Friends in England, with England leading the way in turning Dementia Friends into a global movement including sharing its learning across the world and learning from others.
  19. 19. Over half of people living in areas that have been recognised as Dementia Friendly Communities, according to the guidance developed by Alzheimer’s Society working with the British Standards Institute.
  20. 20. All businesses encouraged and supported to become dementia friendly, with all industry sectors developing Dementia Friendly Charters and working with business leaders to make individual commitments (especially but not exclusively FTSE 500 companies)
  21. 21. National and local government taking a leadership role with all government departments and public sector organisations becoming dementia friendly and all tiers of local government being part of a local Dementia Action Alliance.
  22. 22. Dementia research as a career opportunity of choice with the UK being the best place for Dementia Research through a partnership between patients, researchers, funders and society.
  23. 23. Funding for dementia research on track to be doubled by 2025.
  24. 24. $100m Dementia Discovery Fund 17 March 2015 Major pharmaceutical companies, Alzheimer’s Research UK and government all commit in principle to investing in the fund. A $100m Dementia Discovery Fund announced at the World Health Organization’s First Ministerial Conference on Global Action Against Dementia. Major pharmaceutical companies have all committed in principle to investing in the project, alongside Alzheimer’s Research UK and the UK government. The ultimate aim is to develop pioneering new drugs to treat the condition. The money committed by investors in March 2015 included the £15m that the UK government announced for the fund in autumn 2014.
  25. 25. An international dementia institute established in England.
  26. 26. NIHR 1. International Action Plan: Contributing to the development of an international action plan for research, which will account for the current state of science and promote global efforts to maintain brain health and find therapies for dementia.
  27. 27. 2. Championing research: Working with clinical academics and the NHS.
  28. 28. 3. Patients and their data: Improving recruitment of patients into research through building on the NHS Constitution pledge to inform patients about opportunities to participate in research and engaging the NHS in the implementation of 'Join Dementia Research’.
  29. 29. 4. Facilitating clinical research: Working with the Translational Research Collaboration and the NIHR Clinical Research Network towards achieving common research platforms; working within current frameworks for consent and use of data to promote sharing of data from existing research.
  30. 30. An aside on translationary research.. 1. Patient stratification through identification and validation of diagnostic and prognostic biomarkers of disease and genetic markers of susceptibility. 2. Discovery, development and delivery of innovative disease modifying therapies, which include those discovered through the longitudinal study of genetically at-risk cohorts.
  31. 31. 3. Identification of new disease-causing genes and subsequent development ofclinical testing. 4. Extrapolation of discoveries in young onset dementia to older patient groups 5. Detection, prevention and treatment of protein misfolding and aggregation indementia
  32. 32. 6. Living Well with Dementia: Facilitating research to support living well with dementia initiatives and identifying effective interventions, in the clinic, in the nursing home, and in everyday life.
  33. 33. 6. Building research capacity and addressing other barriers to research progress.
  34. 34. Increased investment in dementia research from the pharmaceutical, biotech devices and diagnostics sectors, including from small and medium enterprises (SMEs), supported by new partnerships between universities, research charities, the NHS and the private sector.
  35. 35. Cures or disease modifying therapies on track to exist by 2025, their development accelerated by an international framework for dementia research, enabling closer collaboration and cooperation between researchers on the use of research resources – including cohorts and databases around the world.
  36. 36. The ‘amyloid hypothesis’
  37. 37. Issues with ‘the amyloid hypothesis’
  38. 38. • Aβ deposition occurs in cognitively normal individuals • Why are plaques present in cognitively normal individuals? • Studying Aβ oligomer toxicity in vivo is methodologically difficult • Pre-clinical AD models are not representative of human disease
  39. 39. Morris, Clark and Vissel (2014) “So far, anti-Aβ treatments have broadly failed to meet their primary clinical endpoints and some major phase 3 trials were halted early. None of the tested treatments have produced a discernible functional recovery, or altered the course of disease. In fact alarmingly some, specifically inhibitors of γ- secretase, lead to an increased decline in cognition.”
  40. 40. Morris, Clark and Vissel (2014) “Another prominent suggested reason for clinical failures of anti-Aβ drugs in particular are that the agents used initially were not properly validated and were flawed. A recent study has shown the monoclonal anti-Aβ antibodies, solanezumab and crenezumab, fail to target human Aβ as effectively as they target over-expressed human Aβ in mouse models.”
  41. 41. More research made readily available to inform effective service models and the development of an effective pathway to enable interventions to be implemented across the health and care sectors.
  42. 42. Open access to all public funded research publications, with other research funders being encouraged to do the same.
  43. 43. 4 areas of ‘World Dementia Council’ work • Integrated development – Optimising the path of medicines from research through to market by reducing barriers & encouraging regulatory flexibility. This work is being led by WDC member Raj Long, Senior Regulatory Officer, Integrated Development, Global Health at the Bill & Melinda Gates Foundation.
  44. 44. 4 areas of ‘World Dementia Council’ work • Finance and incentives – Looking at ways to increase the relatively low investment in funding dementia innovation by exploring new types of funding product.
  45. 45. 4 areas of ‘World Dementia Council’ work • Open science – Unleashing the potential of open science for sharing information and knowledge to accelerate progress in developing new treatments and care approaches, and avoiding wasteful duplication of effort. Both the World Health Organisation and OECD will be supporting the Council in developing their work on this. .
  46. 46. 4 areas of ‘World Dementia Council’ work • Public health/prevention – The Council is also beginning an evidence review into existing research on how risk factors such as diabetes and heart disease relate to dementia, as well as looking into public health messaging on lifestyle and prevention. WDC member Harry Johns, President and CEO of Alzheimer’s Association, Harry Johns is leading this review. .
  47. 47. Increased numbers of people with dementia participating in research, with 25 per cent of people diagnosed with dementia registered on Join Dementia Research and 10 per cent participating in research, up from the current baseline of 4.5 per cent.
  48. 48. • Cure • Care • Research
  49. 49. • Dementia friendly communities • Choice: budgets or human rights • Integrated care and whole person care • Cure, care and research