Living Well with Dementia – even when you’re ill

1. Living Well with Dementia – even when you’re ill Sean Page Consultant Nurse – dementia Betsi Cadwaladr University Health Board & Honorary Senior Lecturer Bangor University

3. Living well (with dementia)

4. ‘Civil society was not founded to merely preserve the lives of its members; but that they may live well’.

5. The State has a duty to protect all its citizens. • Organs and agents of the State share that duty.

8. ‘….. It must above all be so that the entrance of the doctor into a unit has something of the sunrise about it.’

10. The State has a duty to protect all its citizens. • Organs and agents of the State share that duty.

11. The State has a duty to protect all its citizens. • Organs and agents of the State share that duty.

12. “….. healthcare needs to have a culture of caring, commitment and compassion. It requires the hard lessons of a Stafford to realise that it cannot be assumed that such a culture is shared by all who provide healthcare services to patients.”

13. ‘Civil society was not founded to merely preserve the lives of its members; but that they may live well’.

14. The State has a duty to promote well-being for all its citizens. • Organs and agents of the State share that duty.

16. … that among these are life, liberty and the pursuit of happiness

17. That all men are by nature equally free and independent and have certain inherent rights, of which, when they enter into a state of society, they cannot, by any compact, deprive or divest their posterity; namely, the enjoyment of life and liberty, with the means of acquiring and possessing property, and pursuing and obtaining happiness and safety. Virginia Declaration of Rights, July 1776

18. To live and have health. • To be autonomous. • To be free of poverty, want or need. • To be safe. • To achieve a state of happiness (well-being).

19. The State has a duty to promote well-being for its citizens. • Organs and agents of the State share that duty.

20. The State has a duty to promote well-being all its citizens. • Organs and agents of the State share that duty.

21. Oriented around improving quality of life for people with dementia and their carers by: • Increased awareness of dementia and reduced stigma. • Easier access to early diagnosis. • Developing services to meet needs. • A prescriptive document dependent upon resource commitment.

22. ‘This is a once in a generation opportunity to do something to improve the lives of people with dementia’ Sube Bannerjee, May 2009

23. The citizens of the wider society have a duty to support and protect its vulnerable members. • The Big Society?

27. "You can exist without your soul, you know, but you'll have no sense of self anymore, no memory, no...anything. There's no chance at all of recovery. You'll just -- exist. As an empty shell. And your soul is gone forever...lost."

28. ‘I have, so to speak, lost myself.’

29. Self Portrait. William Utermohlen 2000

31. “Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soul-less and evil. You will be left with nothing but the worst experiences of your life."

34. The antidote has been seen as the person centred model – the ‘new culture of dementia care’. But there are tensions within this that may hold back change. Personhood is still conferred by others, not an unalienable right. Person centred is not person directed.

35. The antidote has been seen as the person centred model – the ‘new culture of dementia care’. But there are tensions within this that may hold back change. Personhood is still conferred by others, not an unalienable right. Person centred is not person directed.

36. The citizens of the wider Society have a duty to support, protect and advocate for its vulnerable members. • Citizenship models promote well being.

37. Creating a socially just society in which everyone is valued and can be an included citizen enjoying an equal place in a community that has the capacity to support the person with dementia. Citizenship and health are symbiotic. A society that excludes people from citizenship guarantees poor health. Meanwhile, good health depends on much more than just access to even the very best health care. It depends on active citizenship.

38. Active citizenship may be underpinned by shared language/s, an expectation to be afforded dignity and respect and an opportunity to participate in family and community life. To have a life that has value, meaning and purpose.

39. Active citizenship may be underpinned by shared language/s, an expectation to be afforded dignity and respect and an opportunity to participate in family and community life. To have a life that has value, meaning and purpose.

40. ‘Civil society was not founded to merely preserve the lives of its members; but that they may live well’.

41. Well-Being

42. … that among these are life, liberty and the pursuit ofhappiness

43. Aristotle described the concept of eudaimonia – misinterpreted as happiness and seen to equate to well-being • Happiness is a final end or goal that encompasses the totality of one’s life. It is not something that can be gained or lost in a few hours, like pleasurable sensations. It is more like the ultimate value of your life as lived up to this moment, measuring how well you have lived up to your full potential as a human being. (poorly abridged from Nicomachean Ethics, 1097a30-34)

44. ‘A complex construct that has eluded attempts to define and measure’ (Pollard and Lee, 2003 p60). • ‘Well being is intangible, difficult to define and even harder to measure’ (Thomas, 2009 p11). • It can be reductionist, simplistic, contradictory, complex, misleading, confusing and overly inclusive.

45. ‘A complex construct that has eluded attempts to define and measure’ (Pollard and Lee, 2003 p60). • ‘Well being is intangible, difficult to define and even harder to measure’ (Thomas, 2009 p11). • It can be reductionist, simplistic, contradictory, complex, misleading, confusing and overly inclusive.

46. Well-being An affective component + a cognitive component. Related to how we feel and how we think. Affective ‘The preponderance of pleasant rather than unpleasant affect in ones life over time’ (Larsen, 1993) Cognitive The preponderance of positive emotional reactions in relation to ones life experiences based on ones evaluation or judgement of circumstances.

47. Well-being An affective component + a cognitive component. Related to how we feel and how we think. Affective ‘The preponderance of pleasant rather than unpleasant affect in ones life over time’ (Larsen, 1993) Cognitive The preponderance of positive emotional reactions in relation to ones life experiences based on ones evaluation or judgement of circumstances.

48. Well-being An affective component + a cognitive component. Related to how we feel and how we think. Affective ‘The preponderance of pleasant rather than unpleasant affect in ones life over time’ (Larsen, 1993) Cognitive The preponderance of positive emotional reactions in relation to ones life experiences based on ones evaluation or judgement of circumstances.

49. Well being is a dynamic process which gives people some sense of how their life is going.

50. Well being is a dynamic process which gives people some sense of how their life is going. • Through an interaction between current circumstances, activities and psychological resources