Building positive relationships between healthcarers and persons with dementia using the application of person centred dementia care

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2 Building positive relationships between healthcarers and persons with dementia using the application of person centred dementia care 12 th Annual Conference Australian Psychological Society Psychology of Relationships Interest Group 8 th to 9 th November Dr Anita De Bellis RN MN PhD Senior Lecturer School of Nursing & Midwifery Flinders University, Adelaide Australia

3 Acknowledgements SA & NT Dementia Training Study Centre The Nurses Memorial Foundation of SA Inc Chloe Hall and John Kudelka Leahurst Home for Aged Trained Nurses Research and Production Team Alison Wotherspoon Sandy Bradley Pauline Guerin Bonnie Walter Maggie Cecchin Jan Paterson Marie Alford Advisory Group Participants Actors and Interviewees Evaluators

4 Definition of Dementia The general definition of dementia relates to any organic condition where there is an irreversible loss of cognitive capacity and memory, such that there is a decline in a person s ability to function socially, physically and emotionally over time. The kinds of cognitive disturbance that occur include: memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation. (World Health Organisation, 2007)

5 Diseases Contributing to Dementia Alzheimer s Disease (AD) Multi-infarct or Vascular Dementia (VaD) Dementia with Lewy Bodies (DLB) Parkinson s Disease Frontotemporal Lobe Dementia (FTLD) Pick s Disease Others: alcohol and drug related brain damage, AIDSrelated brain damage, toxins, inflammation etc. Creutzfeldt Jacob Disease Heavy metal poisoning Head injury Ageing process

6 Alzheimer s Disease (AD) This is the most common type accounting for the majority of cases of dementia. Abnormal proteins form microscopic tangles (made of tau protein) inside brain cells while plaques (made of amyloid protein) form within the substance of the brain. These proteins gradually accumulate leading to the death of brain cells and remain behind as abnormal depositions of protein. Tangles and plaques disrupt messages between brain cells affecting assimilation and retrieval of information. AD can affect all areas of the brain with functions and abilities lost as different areas are affected. The most common presenting symptom is memory loss with planning, reasoning, speech and orientation variably affected.

7 Auguste Deter was the first person reported (in 1901) to have the form of dementia now known as Alzheimer's disease. The disease is named after Alois Alzheimer, the German doctor who first described it. Alzheimer's disease is a major cause of dementia. After Auguste Deter died in 1906, doctors examined her brain and found that it appeared shrunken and contained several unusual features; including strange clumps of protein called plaques and tangled fibers inside the nerve cells.

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9 Normal Alzheimer s Disease

10 Alzheimer s Disease no cause no cure ageing population one in three person s over 85 years of age therapeutic interventions restraint physically, chemically, psychologically and emotionally unskilled, untrained and uneducated workforce in aged care

11 The person with dementia often cannot: remember what they said or did learn new information help acting the way they do think logically understand complicated ideas express themselves clearly make decisions or plan actions handle stressful situations maintain intimate and social relationships

12 Relationships for the Person Living with Dementia emotions and feelings increasing dependence on others unable to express needs need for security and safety need for nourishment need for social relationships expression through psychosocial behaviours

13 Behavioural Problems insomnia habits sun downing wandering, pacing incontinence vocalisation resistance Inappropriateness combative aggression violence agitation catastrophic reactions disinhibition hallucinations, paranoia shadowing repetitive actions fear

14 Person Centred Dementia Care Dr Carl Rogers client centred counselling student centred education person centred approaches to human relations and community Professor Tom Kitwood Personhood Person centred dementia care Professor Dawn Brooker VIPs

15 Philosophy of Personhood Personhood: A standing or status that is bestowed upon one human being, by another, in the context of relationship and social being. Personhood emphasises: Respect for the subjective experiences through empathy Non-judgemental acceptance of the individual See the person as whole Positive view of human nature Interpersonal and social relationships Non-directive approach Professional = enabler or facilitator Maintenance of dignity and integrity Validation

16 Person Centred Dementia Care The person with dementia is equal in worth or value to the person who is caring for them

17 Theory of Person Centred Dementia Care (Dementia = P+B+H+NI+SP) = Person With Dementia D (Dementia) = P (Personality) PLUS B (Biography) PLUS H (Physical Health) PLUS NI (Neurological Impairment) PLUS SP (Social Psychology) D (P + B + H + NI + SP) = PWD

18 Person Centred Dementia Care Emphasises that personhood is about the morality of accepting and acknowledging the right of each person within the care relationship to be accepted as a person with the same needs, worth and wellbeing as others in any relationship

19 Person Centred Dementia Care This entails negating the separation of one person from another or placing one person above the other Implies presence, inclusiveness, recognition, respect and trust Interplay of physical care, social care and psychological events that creates the person with dementia Malignant psychosocial interactions and relationships cause a worsening of the dementia a spiralling down an ill being

20 VIPs Model VALUE V - a value base that asserts the absolute value of all human lives regardless of age or cognitive status INDIVIDUALISED I - using an individualised approach that promotes the uniqueness of the person PERSPECTIVE P - understanding the world from the perception of the person living with dementia SOCIAL S - promotion of a supportive social psychology in which the person living with dementia can experience relative wellbeing

21 Practice that affects Personhood Positive Person Work (PPW) or positive interaction with person with dementia maximises their personhood Malignant Social Psychology (MSP) or negative interaction with person with dementia undermines their personhood

22 Tom Kitwood (1997) Personhood 12 person-centred interactions conducive to personhood and wellbeing Celebration Collaboration Creation Facilitation Giving Holding Negotiation Play Recognition Relaxation Timalation Validation These interactions have been labelled positive because they assist to maintain and enhance the personhood, dignity and wellbeing of the person with dementia

23 Tom Kitwood (1997) Malignant Social Psychology 17 (malignant) interactions that undermine personhood and wellbeing Accusation Banishment Disempowerment Disparagement Disruption Infantilisation Ignoring Imposition Intimidation Invalidation Labelling Mockery Objectification Outpacing Stigmatisation Treachery Withholding A negative interaction with a person with dementia can affect their wellbeing and the way they conduct themselves with other people. Negative interactions on the part of healthcare professionals or students can engender deterioration in the state of dementia in a person, creating a spiralling effect that leads to greater confusion and more disruptive behaviours.

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25 Research SA & NT Dementia Training Study Centre Needs Analysis Healthcare graduates Were fearful of persons with dementia Had little knowledge of dementia Were lacking in skills - communication skills Avoidance Stigma of dementia coupled with ageism Nexus between theory, practice, research and education

26 AIMS The aim of this resource is to educate undergraduate healthcare students about how to interact with people who have dementia using a person centred approach in dementia care practice. Prepare for challenging situations Real life case scenarios (reality) Strategies to enhance positive pyschosocial interactions How to interact How not to interact Evidence based care Interdisciplinary Easily accessible Evaluation

27 Methodology Community Based Participatory Research Research and Production Team Advisory Group 20 members 11 disciplines across 17 organisations Consumer and student representative Case studies from the field (n=35) Workbook and DVD Learning objectives Theory Re-enacted scenarios Interviews

28 Case Scenarios Themes Violence/Aggression (n=6) Transport/Negotiation/Carers (n=7) Language/Food/Speech/Interpretation (n=6) Resistance/Behaviours (n=10) Repetitive/Absconding (n=6) All 17 malignant psychosocial interactions identified in the case studies Five docu-dramas with 45 actors and 13 crew Come Feel With Me Come Walk With Me Come Dance With Me Come Listen To Me Come Meet With Me

29 Case Scenarios Interviews with expert practitioners Settings 2 Acute Care 2 Residential Aged Care 1 Community Persons with Dementia 3 males (1 younger onset dementia ) and 2 females Workbook theoretical underpinning of person centred dementia care, reflective questions

30 Come Into My World How to Interact with a Person who has Dementia: An educational resource for undergraduate healthcare students on person-centred care De Bellis A, Bradley SL, Wotherspoon A, Walter B, Guerin P, Cecchin M and Paterson, J (2009) Come Into My World - How to Interact with a Person who has Dementia: An educational resource for undergraduate healthcare students on person-centred care, Flinders University, Hyde Park Press, Adelaide

31 Academic Evaluation Demographics 316 academics teaching in healthcare programs contacted by to participate 4 universities Charles Darwin Flinders University University of Adelaide University of South Australia 83 responses to evaluate resource 39 academic evaluations returned from 18 disciplines

32 Percentage Academic Evaluation Academic Responses (n = 39) Q2: Value for Student Q1: Value for Education Q3: Theoretical Content Q4: Usefulness Q5: Applicability Q7: Overall Production Q6: Reflexive Questions Q8: Brooker Interview % Poor % Unsat % Sat % Good % Excellent

33 Academic Evaluation Comments #3 Thank you so much for the privilege of being sent this resource and DVD. I have to admit that my heart sank when it arrived and it duly landed in my overfull 'to do' tray. But tonight I have read the booklet and watched all the DVDs - I have learnt much and would have no hesitation in using this in teaching in the future. I have seen so many malignant social psychology behaviours (ref to hcp) over the years and now have a vocabulary to describe it - thanks just wanted to say thanks for putting all this together. I know it takes an age to do.

34 Student Evaluation Demographics Flinders University 4 Cohorts Nursing Paramedics Speech Pathology Health Science Responses to evaluate resource 105 Pre-test 61 Post-test 61 Completed Evaluations

35 Student Evaluation Students knowledge, confidence, comfort and understanding of dementia significantly improved on all scales Students understanding of personhood and person centred dementia care increased significantly Students believed it was a valuable resource for their learning and future practice Students stated they had changed their attitude and approach to persons living with dementia Students believed that had attained useful psychosocial skills

36 Student Comment #GEMM My father-in-law (82 yrs) has recently been moved into a dementia unit of a nursing home. This resource has changed my way of communicating with him. Now I 'go into his world" and it's made a fantastic difference to the quality of time I spend with him. Prior to that, I felt awkward and unsure how to 'be' in his company. I certainly wasn't in the category of 'malignant social psychology' just unsure how to respond to his way of communicating. Thank you for the opportunity of reviewing this resource. As a nursing student it will be an invaluable aid to review. Chloe Hall's music and song are a beautiful accompaniment to the DVD. Very moving words.

37 Safety Statement Please be aware that some of the filmed scenarios contain coarse language and some violence. Material viewed in the DVD may be confronting to undergraduate healthcare students and other viewers and may cause responses unanticipated prior to viewing. For this reason, it is suggested that consideration be given in advance of a person that can be approached to discuss any feelings or emotions that may arise as a result of this viewing. These scenarios contain some examples of poor practice that are for teaching and educational purposes only.

38 Educational Resource Free online Hard Copies SA & NT DTSC, Alzheimer s Australia (SA) dtsc@alzheimerssa.asn.au UK version Stand By Me Chinese version Indonesian version

39 References Brooker, D (2004) What is Person-centred care in dementia? Clinical Gerontology, 13: Brooker, D (2007) Person-centred dementia care: making services better, Jessica Kingsley, London, England. De Bellis A, Bradley SL, Wotherspoon A, Walter B, Guerin P, Cecchin M and Paterson, J (2009) Come Into My World - How to Interact with a Person who has Dementia: An educational resource for undergraduate healthcare students on person-centred care, Flinders University, Hyde Park Press, Adelaide De Bellis, A., Mosel, K., Curren, D., Prendergast, J., Harrington, A. and Muir-Cochrane, E. (2011) Education on Physical Restraint Reduction in Dementia Care: A review of the literature, Dementia: The International Journal of Social Practice and Research, published online October Kitwood, T (1997) Dementia reconsidered: the person comes first, Open University Press, Buckingham, England. Kitwood, T (1998) Toward a Theory of Dementia Care: Ethics and Interaction, Journal of Clinical Ethics, 9(1): Minkler, M & Wallerstein, S (2003) Introduction to Community Based Participatory Research, in Community Based Participatory Research for Health, M Minlkler and S Wallerstein (Eds), John Wiley & Sons Inc, Jossey-Bass, San Fransisco. Worcestershire Health and Care NHS Trust (2011) Stand by Me: Promoting good communication with people living with dementia and their families. Pelican Press, Manchester. World Health Organisation. (2007). The ICD-10 Mental and Behavioural Disorders:F00-F99. Chapter V: Organic, including symptomatic, mental disorders viewed 6 January 2009, from

40 Thank You Dr Anita De Bellis School of Nursing & Midwifery Flinders University