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Living Well with Dementia even when youre ill Sean Page Consultant Nurse dementia Betsi Cadwaladr University Health Board & Honorary Senior Lecturer Bangor University

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Living well (with dementia)

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Civil society was not founded to merely preserve the lives of its members; but that they may live well. 1.

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

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

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

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

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.. 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.

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Civil society was not founded to merely preserve the lives of its members; but that they may live well. 1.

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

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

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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

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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).

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

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

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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.

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

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

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"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."

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I have, so to speak, lost myself.

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Self Portrait. William Utermohlen 2000

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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."

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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.

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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.

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

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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.

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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.

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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.

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Civil society was not founded to merely preserve the lives of its members; but that they may live well. 1.

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Well-Being

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

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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 ones 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)

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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.

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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.

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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.

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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.

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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.

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

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Through an interaction between current circumstances, activities and psychological resources

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Activities need to be meaningful, engaging, offer a sense of competence and autonomy. Psychological resources, established over the lifetime and represent the stock of inner resource that may be drawn on when things go wrong to provide strength, resilience and coping,

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Measuring Well-Being

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Can only realistically measure your own well being. Measuring that of others is fraught with problems of bias - most obviously subjectivity. Dementia Care Mapping is a potentially useful measure.

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Acute hospitals and the person with dementia

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Its been like going to Buckingham Palace for a while. No complaints at all, excellent. They should have more respect and compassion for patients. Patient responses Fundamentals of Care Audit: BCUHB: 2013

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The affective component is skewed towards the unpleasant or negative experience. The cognitive component leans towards a negative emotional reaction. Admission begins a process of ill-being.

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Admission is not uncommon. The expected number of people with dementia in North Wales is 10,678. 3,251 people with dementia admitted through YG, YGC and YMW. 95% admitted as unscheduled or emergency.

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Across the NHS one in every four acute hospital beds is occupied by a person with dementia

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In some wards every other hospital bed is occupied by a person with dementia

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Hospital admission is potentially harmful to people with dementia Increased length of stay Increased risk of worse health Deterioration in symptoms of dementia Increased risk of anti psychotic medication being prescribed Increased likelihood of discharge to care facility Increased mortality

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Anti psychotics and dementia From the Bannerjee model 2009 180,000 pwd treated with antipsychotic. 36,000 may derive some benefit 1 in 5. 1,620 additional CVAs (3 fold increased risk) 1,800 additional deaths (1-2% increased risk)

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Hospital admission is potentially harmful to people with dementia Increased length of stay Increased risk of worse health Deterioration in symptoms of dementia Increased risk of anti psychotic medication being prescribed Increased likelihood of discharge to care facility Increased mortality

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The Influence of Healthcare Staff on Well-Being

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Malignant Social Psychology. A social environment in which interactions and communications occur which reduces the 'personhood' of the people within that environment. It is fuelled by lack of insight or knowledge of the negative effects brought by this interactions.

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Cognitive Dissonance. The feeling of discomfort that results from holding two conflicting beliefs. When there is a discrepancy between beliefs and behaviors, something must change in order to eliminate or reduce the dissonance.

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Training lack of it. However, general hospitals have focused on the care of people with acute illnesses, and responding to the challenges of co-morbid dementia has not been seen as a central component of their service. General nurses feel their skills reside in acute physical conditions, and may have received little training in care of people with dementia. (1000 Lives, Improving Dementia Care driver 2, p23) 68% of general hospital nurses state they have insufficient training to provide the care that is required by people with dementia (HQIP, 2011).

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Can we Fix-It ?

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To feel valued. To be able to communicate in a language of preference. To be treated with dignity and respect. To have autonomy. To be safe. To participate in the life of the community. To participate in family life. To enjoy activity that has value, meaning and purpose. The preponderance of pleasant rather than unpleasant affect in ones life The preponderance of positive emotional reactions in relation to ones life experiences based on ones evaluation or judgement of circumstances.

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Achieving this vision is ambitious. We do not pretend it will be easy nor that excellent dementia care will be achieved in the time scale covered by this strategy. But we do believe that strong foundations can be laid. (BCUHB Dementia Strategy 2014-2016)

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Furthermore this strategy recognises that excellent, compassionate and safe care will only be achieved if we accept that all staff have a right to develop the knowledge, skill and confidence that is required. (BCUHB Dementia Strategy 2014-2016)

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The Butterfly scheme

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Its been like going to Buckingham Palace for a while. No complaints at all, excellent. They should have more respect and compassion for patients. Patient responses Fundamentals of Care Audit: BCUHB: 2013

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Just to let you know Roger's appointment today went off beautifully due to I'm sure the butterfly scheme. Roger didn't get agitated and that was a bonus, so I give it marks 10 out of 10 My dad is on an end of life plan and only has couple of days left. The staff at the hospital have been great and even donated their blue butterfly pin badges to me my mum and sister as he's been there for 3 weeks. We are doing 24 hour vigil at his bedside. The family would like all the family to wear the badges at his funeral in recognition of his wonderful care.

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Just to let you know Roger's appointment today went off beautifully due to I'm sure the butterfly scheme. Roger didn't get agitated and that was a bonus, so I give it marks 10 out of 10 My dad is on an end of life plan and only has couple of days left. The staff at the hospital have been great and even donated their blue butterfly pin badges to me my mum and sister as he's been there for 3 weeks. We are doing 24 hour vigil at his bedside. The family would like all the family to wear the badges at his funeral in recognition of his wonderful care.

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The Dementia Support Workers

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The preponderance of pleasant rather than unpleasant affect in ones life The preponderance of positive emotional reactions in relation to ones life experiences based on ones evaluation or judgement of circumstances.

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The Dementia Supportive Environment Project

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External review of dementia supportive environments across BCUHB by Prof. Bob Woods. Evidence based recommendations discussed with matron body and priorities set. Mapping of PCSM CPG with action plans. Emphasis placed on familiarity and orientation.

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Orientation artwork partnerships with N. Wales Photographic Association and Primary Schools.

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Dementia Audit Plan

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50% of audit plan to be set by people with dementia and their carers/family. 3 rd round of National Dementia Audit with 3 rd BCUHB Dementia Plan reportable to WAG. Audit of diagnosis disclosure preferences across all memory services complete. Audit of Welsh language capacity and value across OPMH services initiated.

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Thank You sean.page@wales.nhs.uk sean.page@wales.nhs.uk