Challenging the perceptions of dementia care: how can we do things differently?

1. Challenging the perceptions of dementia care: how can we do things differently? Dr Roger Bullock Kingshill Research Centre

2. The National Dementia Strategy 4 in 10 diagnosed 2009 Big launch Slow start 2011: 4 in 10 diagnosed

3. Why? Primary care needs education Services need more investment Need more public education Spend lots on TV advertising Actually a lot has happened, this is just a poor performance indicator

4. Smoke and mirrors What is dementia? What is Alzheimer’s disease? Is this normal ageing? Have we got the right strategy? Is 4 out of 10 actually quite good?

5. Eras of dementia Senility – lost in the ageing process Dementia – through the biomedical looking glass, where the person becomes invisible Personhood – where brain meets body Disability – empowering to ask for same as the able bodied Citizenship – having an equal position in society

6. Biomedical Incurable brain disease Decline and dependency Loss of person Aggression and difficult behaviour Plaques and tangles Burden on healthcare

7. Biomedical explanations The cholinergic hypothesis BPSD Visual hallucinations and acetylcholine Increased tangles in the frontal lobe and psychosis – but no dopamine loss Not much other physical evidence for “BPSD” The amyloid hypothesis

9. Mild cognitive impairment • Or prodromal AD • How useful is it? • Do people want it – how early is early? • Where are we going with this?

10. Response has been Research for a cure, particularly AD Exaggeration of benefits of any treatments Over complication of diagnostic tests Health payers created new rules for this particular long term condition NICE perpetuated them (and research perpetuates NICE) Primary care think it is all very difficult

11. Is it difficult? A concept of brain failure… • Brain development – good diet, education • Brain maintenance – use it, don’t abuse it, cardiovascular health • Brain impairment – vascular disease, dietary failures (homocysteine), obesity, lack of exercise, diabetes • Brain failure – pathology (which becomes a risk factor), vascular disease, inflammation

12. This is primary care Childhood and adolescent development Cardiovascular protection Weight advice Diabetes control Holistic care Management of morbidity of ageing Managing dementia – with or without the label

13. And public health Illiteracy and poor diet Smoking, drugs and alcohol Obesity Diabetes Lack of exercise Supplements (e.g. folic acid)

14. Simple solutions (1) • Health education at school level – even intergenerational education? • Support Jamie Oliver • Maintenance of good physical health • Exercise • Cognitive stimulation as you age – and as therapy

15. Current specialist services Wait for the event Dominated by “diagnosis” and care programmes – seen as needed Concentrate on difficulties Offer crisis response Monitor decline Support the carers in many ways, but not always the individuals – reassurringly expensive Promote dependence, not recovery

16. Issues 95% of referrals are AD – memory clinics are self selecting Most AD patients and families know Other diagnoses are not always complex Could this be delivered in the current primary care context? Is it already?

17. Simple solutions (2) • Engage primary care • Use the drugs going off patent as an opportunity to get this right • Have a memory clinic in every surgery i.e. make it a normal experience

18. Dementia Latin for “loss of mind” Definition driven by memory Actually is a clinical stage, where a functional end point is reached Has multiple causes Functional decline relates more to executive disorders Cannot be reversible – cognitive impairment can

20. Cortical Sites of Origin for the Dorsolateral, Orbitofrontal, and Anterior Cingulate Frontal Subcortical Circuits

21. Location of the Lesion

22. Personhood The individual counts They need comfort, attachment, inclusion, identity and occupation – ‘wellbeing’ Helpful and holistic Improved the care context Positioned an individual within society

23. But is it enough? It continues to be passive and unidirectional – putting a person in the position of dependence on others Tends to promote the status quo rather than growth Has reached an impasse….

24. Personhood’s dilemmas Can collude with the biomedical model. Status is still conferred by other as we still are not clear what people with dementia want. It is person centred, not person directed Individual focus does not always have cultural relevance and talks of “the dementia experience” – assuming a homogeneity that does not exist

25. Even more… It uses apolitical language which is intuitively appealing Has not impacted society’s image of frail, cognitively impaired and dependent people who get nasty and cost money So needs to move towards making people with dementia active and vocal members of society

26. Citizenship The relationship people have with the state Based on power, personhood is not Has exclusionary tendencies and assumes cognisance and ability to work/contribute (Lister 2003) Denies difference (Higgs 1997)

27. Citizenship The relationship people have with the state Based on power, personhood is not Has exclusionary tendencies and assumes cognisance and ability to work/contribute (Lister 2003) Denies difference (Higgs 1997)

28. Need to make citizenship a practice Achieved in individuals through the power dynamics of everyday talk and action (Barnes 2004) Expression of human agency (Lister 2003) Fundamental to the way of being with others (Isin 2007) Creates norms, values and practices to solve problems for the individual and others

29. National dementia strategy Intervention by the state Promotes better public knowledge (citizenship) Hinges around early diagnosis (biomedical) and the need for a label Intends to enable “Living well with dementia” (personhood) Needs to aim to promote dementia in society, not improved care for people with dementia

30. So need to shift current paradigms Agree what early diagnosis means and what it triggers. People with dementia then require a move from: • Comfort to growth • Identity to identities • Occupation to purpose • Attachment to solidarity with others • Love to freedom from discrimination

31. How? Encourage people with dementia to speak out in a positive way Enable people with dementia to act in public positions Look at research on what people want, not just focus on cures Commission services that promote citizenship Challenge some aspects of the law e.g. HRA

32. Care A species activity that includes everything we do to maintain, continue and repair our world so that we can live in it as well as possible It includes our bodies, our selves and our environment, all of which we seek to interweave in a complex life-sustaining web Citizenship depends on care

33. Care Facilitation of care promotes citizenship, so not only people with dementia and their carers need a voice, professionals do too Dementia strategy arose because people with dementia felt services were not working - a mismatch of high expectation that something should be done and a low expectation anything will be

34. All services need to… • Build on the ethics of care: Attentiveness (interdependence means others matter, more so the vulnerable) Responsibility (all contexts are recognised) Competence (services are delivered) Responsiveness (alert to balance shifts) Trust • Promote citizenship above dependency

35. A new citizenship dementia strategy (charter) Education about the brain from an early age Understanding that life choices contribute to future brain failure – as with other organs Including preservation of cognition in the well being strategies Creating dementia friendly environments, including employment opportunities Looking at societal solutions e.g. intergenerational schools

36. Simple solutions (3) Consider dementia as a long term condition Challenge the expectations, including legal and societal to build a citizenship model Plan to make a long term difference

37. How to assess in the new model Context Abilities (reverse of difficulties) Intrapersonal understanding History of the person (Life story) Interpersonal relationships Societal responses

38. Dementia services? Need a partnership of people with complimentary skills who have the time to gain full contextual understanding Have to understand the full physical, social and psychological aspects of an individual pertaining to their place in society If aiming at early detection, must use their findings to promote the person within society

39. New outcomes need to be set Individual levels Better commissioning expectations Societal acceptance Moral philosophers employed in the NHS? Ultimately we need increase in autonomy, based on a personal, family and societal reaction augmented by benefit from any potential future drug intervention

40. Simple solutions (4) • Keep the biomedical model in context – do not wait for more specialist drugs • Involve public health to bridge the health/social divide • Set all encompassing local targets • Make living well with dementia a reality

41. Eras of dementia Senility – lost in the ageing process Dementia – through the biomedical looking glass, where the person becomes invisible Personhood – where brain meets body Disability – empowering to ask for same as the able bodied Citizenship – having an equal position in society

42. Thank you for your attention