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John Keady Dementia and Ageing Research Team School of Nursing, Midwifery and Social Work The University of Manchester/ Greater Manchester West (GMW) Mental.

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Presentation on theme: "John Keady Dementia and Ageing Research Team School of Nursing, Midwifery and Social Work The University of Manchester/ Greater Manchester West (GMW) Mental."— Presentation transcript:

1 John Keady Dementia and Ageing Research Team School of Nursing, Midwifery and Social Work The University of Manchester/ Greater Manchester West (GMW) Mental Health NHS Foundation Trust Seminar: The Getting to Know Me Study : Involving people with dementia and carers in developing training materials for hospital staff Bangor University: 22 nd November 2013

2 Seminar Format About DART Collaborative Research Getting to Know Me Questions

3 Source:http://www.innovationslearning.co.uk/subjects/geography/information/settlements /images/uk-map.gif Salford: Salford Population n=223,000 Estimated no: of people with dementia n=2512 (1.1% of pop) No of people diagnosed with dementia n=1079 (only 43% have a diagnosis)

4 Dementia and Ageing Research Theme Clusters 1. Biographical and narrative work 2. Psychosocial interventions 3. Lifestyle and creative arts 4. Education Transcending themes Family-centred practice Transitions Neighbourhoods

5 DART Group: PhD students Emma Ferguson-Coleman*; Sarah Campbell*; Jackie Kindell*; Xia Li* May Yeok Koo* [Singapore] Started 2013: Lesley Jones*; Rachel Plant*; Sarah Hunter*: Other PhD Supervision: Andrew Hunter* [Galway; final year]; PhD students: Alex Hall; Edmund Chow; Helen Beaumont; Katie Paddock Starting 2014: 2 grant-linked ESRC studentships

6 Dr Richard Ward Sarah Campbell The Hair and Care Project

7 New Grant NIHR: HS&DR Title: The detection and management of pain in patients with dementia in acute care settings: development of a decision tool Start: September 2012 End: August 2014 Team: Dowding D.W., Keady J., Closs S.J., Allcock N., Briggs, M., Swarbrick C, Sampson E., Holmes J., Hulme C. and Corbett A. Role: Greater Manchester. Research conducted through Salford Royal NHS Foundation Trust Award: £900,000

8 Walking interviews “I used to walk around with Mike and he got to know people, he can’t remember them now, but he does know they’re familiar and they’ll say ‘hello’ and he knows then he’s safe, because they’re familiar looking… so that’s his security”

9 Social network mapping “We’re all very friendly but not imposing, we’ve all had sort of jobs and work, so we’ve learnt that yes we’re here for each other, but not always bopping in and out of each other’s houses as such. We’ve got our own privacy which is a good thing, but if any help is needed then they’re there for you”

10 Recent Publication (Journal of Clinical Nursing) Development of the bio-psycho-social-physical model of dementia Involves: John Keady, Lesley Jones, Ingrid Hellström; Richard Ward; Susan Koch; Caroline Swarbrick; Vivienne Davies- Quarrell, Sion Williams PHYSICAL DOMAIN Physical Wellbeing – prevention issues and health promotion/education Physical Health and Examination – assessment, observing, maintaining health e.g. diabetes, mixed presentations Physical Care – personal care, diet, fluids, toilet needs, skin care, nail care, hair care, bowel needs Physical Treatment – use of medications; multiple co- morbidities; ethical parameters Physical Environment; own home to acute care to care home; signage; personalised; recognisable

11 Seminar Format About DART Collaborative Research Getting to Know Me Questions

12 Prime Minister's challenge on dementia: Key Points 1. Driving improvement in health and social care 2. Creating dementia friendly communities 3. Better research Emphasis: The importance of keeping people at home and in local communities

13 Auguste Deter: Case Observations Admitted to Frankfurt am Maine insane asylum in November 1901 Displaying signs of: Weakening of the memory Persecution mania Sleeplessness Restlessness Unable to perform any physical or mental work Condition needs ‘ treatment ’ from the local mental institution Taken from the family doctor ’ s admission note, 1901

14 Auguste Deter: Early Assessment Alzheimer ’ s case note entry November : Writing: When she has to write Mrs Auguste D, she writes Mrs and we must repeat the other words because she forgets them. The patient is not able to progress in writing and repeats, I have lost myself. Reading: She seems not to understand what she reads. She stresses the words in an unusual way. Suddenly she says twins. I know Mr Twin. She repeats the word twin during the whole interview. (p.1548)  Auguste D died in Frankfurt am Maine on April aged 56 years. Reference: Maurerer, K., Volk, S. and Gerbaldo, H. (1997). Auguste D and Alzheimer’s disease. Lancet, 349:

15 Auguste Deter: Her Life Story Born and brought up in Cassell, Germany Protestant religion; female role ‘kinder, kirche kuche’ {children, church and kitchen} Married at age of 23 (to Karl – a railway clerk) and moved to Frankfurt where she stayed all her life Remained married for 33 years ‘happy and harmonious’ – ‘rather amicable’ Had a daughter Thekla ‘Tall woman with long brown hair, brown eyes and elegantly long fingers’ Karl struggled to pay the fees for his wife’s care; he visited her ‘frequently’ Reference Page, S. and Fletcher, T. (2006). Auguste D: One hundred years on. Dementia: 5(4):

16 John: My Father’s Life  ‘ Living in a hole ’  Wrong Shoes  Lists and memory aids  Strength of our relationship  Familiarity and routine  A changed life Reference: Keady, J. and Keady, J. (2006). The wrong shoes; Living with memory loss. Nursing Older People, 17(9): 36-37

17 Salford development: Open Doors support network VALUES AND VISION The OPEN DOORS Support Network “opens doors” for people with dementia and carers to radically and innovatively support the delivery and development of dementia services within Salford [Mike Howorth] OPEN DOORS has been developed by the initial collaboration from representatives from The Salford Memory Assessment and Treatment Service, Reach Beyond, Day Hospital and inpatient dementia services at Woodlands and the University of Manchester, with funding supported by Salford PCT and the University of Manchester

18 Centre of Excellence for Dementia Care Humphrey Booth Resource Centre (Salford)

19 HBRC Research Strategy The Research Strategy and Values has been developed and led by people with dementia with the collaboration of families, services and other organisations, including myself

20 HBRC: Our Values As people with dementia we want … The right to run risks To share positive messages about living with our dementia To remain connected to our everyday lives, communities and the places where we live. The opportunity to take part in the research that is done in our name.

21 We have Four Research ‘wants’ 1. Always Remember It’s About Me As a person with dementia I want to be involved in research that: - Means something to me and others in my life - Is about my everyday life - Is about things I can understand and relate to

22 20 April What is ‘Normal’ in Normal Brain Ageing? Facilitated by Caroline Swarbrick What to expect in normal brain ageing Dr Neil Pendleton (Geriatric Medicine) Living with young onset Alzheimer’s disease Mrs Ann Johnson (person living with dementia and Alzheimer’s Society Ambassador) 29 May Diagnosis, Assessment and Dementia Facilitated by John Keady The dementia assessment process Dr Anna Richardson (Consultant Neurologist, SRFT) Support steps after the diagnosis: what helps and what it all means Dr Mike Howorth (person living with dementia and facilitator of the Open Doors Network, Salford, GMW) 2 July Assistive Technology in Dementia Facilitated by Neil Pendleton AT Dementia Simon Burrow (Programme Director MSc Dementia Care, UoM) Our life story EDUCATE (Group of people living with dementia from Stockport) Interactive Lunchtime Sessions

23 2. To Get The Most from Life As a person with dementia I want to be involved in research that: Focuses on my abilities and not just on what I can’t do anymore Helps my confidence and self-belief in what I am doing Says something about my physical health as well as my dementia Reaches out to others who may be isolated

24 3. Having a Healthy Memory As a person with dementia I want to be involved in research that: Makes life far more simple Exchanges ideas Finds out what works and why

25 4. Keeps Me Involved As a person with dementia I want to be involved in research that: Joins up my experience with that of other people Is done locally and with my consent Listens to what I say and treats me as a person

26 Seminar Format About DART Collaborative Research Getting to Know Me Questions

27 Ruth Elvish, Simon Burrow, John Keady, Kathryn Harney University of Manchester/Royal Bolton Hospital NHS Foundation Trust/ Greater Manchester West Mental Health NHS Foundation Trust/Dementia and Ageing Research Team A Health Innovation and Education (HIEC) Cluster Study “ Getting To Know Me”: A Greater Manchester training resource for supporting people with dementia in general hospitals

28 Health Innovation and Education Clusters HIECs are partnerships between NHS organisations, the Higher Education sector, and companies within industry Greater Manchester HIEC consists of 28 partners: 10 PCTs, 10 Foundation Trusts, 4 Acute Trusts, and 4 Universities Developed to: –Deliver high quality health care –Provide education and training to benefit local populations –Promote innovation in healthcare –Lead to adoption of research GM Projects include: Cancer, Dementia Care and Stroke HIEC Disbanded 2012

29 Experiences in general hospitals Around 25% of all hospital beds occupied by a person with dementia Communication with people with dementia is often fast paced and focused on care-giving tasks. Can lead to reductions in interactions and independence Both staff, people with dementia and relatives felt staff knowledge could be increased The importance of the environment was highlighted – lighting, noise, acknowledgement that the ward is a person’s living space National Dementia Strategy priority area: Commissioning for Quality and Innovation (CQUIN) reward for hospitals offering quality dementia care

30 “Getting to Know Me” study Study Outline Phase 1: Literature review on existing educational materials Phase 2: : Design of training materials (and evaluation – to be discussed later in presentation) Phase 3: Diffusion through training the trainers in new sites Phase 4: Final collection of data from new sites and revisions to the “Getting to Know Me” training materials

31 Phase 1: Dementia training in general hospitals: Outcome of literature review Training should comprise a mix of methods Training beneficial in increasing knowledge and confidence immediately following training, however, the long-term benefits remain largely unknown Face to face contact in training is important. CD- ROM/online learning recommended as a supplement

32 Dementia training in general hospitals Content of training packages: –General information about dementia –Behaviours that challenge –Communication –Feeding –Environmental issues (including contrasting colours of floors/doors, clear signs, calendars/clocks, ‘homely’ environments) –Care planning –Reflective practice No consistent use of outcome measures across studies

33 People involved –University of Manchester: Ruth Elvish, Simon Burrow, John Keady, Rosanne Cawley, Kati Edwards, Jenna King, Abi Tarran- Jones, Pamela Roach –People with dementia and carers: Brian Briggs, Ann Johnson, Mike Howorth (GMW) –Greater Manchester West Mental Health NHS Foundation Trust: Kathryn Harney, Rilwan Adebiyi, Harry Johnson –Royal Bolton Hospital NHS Foundation Trust: Andrew Powell, Pat Graham, Julie Gregory, Gwen Ainsworth, Stephanie Jolly, Gillian Zajac-Roles, Rebecca Wild, Emily Feilding, Nicola Rafter –Salford Royal NHS Foundation Trust: Janice McGrory –Central Manchester University Hospitals NHS Foundation Trust: Nicola Johnson, Danielle Beswick

34 “Getting to Know Me” study Study Outline Phase 1: Literature review on existing educational materials Phase 2: Design of training materials and evaluation Phase 3: Diffusion through training the trainers in new sites Phase 4: Final collection of data from new sites and revisions to the “Getting to Know Me” training materials

35 Focus groups The involvement of people living with dementia and a family carer Outcomes of the literature review Key training content/themes were developed from:

36 Part 1 Dementia: an introduction Part 2 Seeing the whole person Part 3 Developing communication skills Part 4 Impact of the hospital environment Part 5 Knowing the person Part 6 A person centred understanding of behaviour that challenges Training split into six sections:

37 PowerPoint slides Video clips Exercises The manual guides the trainer in the use of:

38 38 “Getting to Know Me” Supporting people with dementia in general hospitals Part 1: Dementia: an introduction © University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust

39 Aims To reflect on the lived experience of having dementia in the hospital setting To be aware of the main types of dementia and the key features of these To consider detection/diagnosis of dementia in hospital

40 Imagine...

41 You are sitting in unfamiliar clothing, beside a bed in a room with three other beds and lockers, you think it might be a hospital but it is strange and unfamiliar You cannot recall how you got here and you are without your keys, phone or money You do not know what is about to happen but you have a sense of dread Occasionally, you summon the courage to call out to people who walk close by. Many ignore you, those who stop and speak to you talk quickly in a language you can make no sense of, and then they swiftly depart You look around but cannot see the face of anyone you know The smells, noises, sights and people – those who appear ill and those in uniform moving about with purpose – are all puzzling and unsettling When you get up your movements are unexpectedly slow and laboured Finally, when you try to seek a way out of this strange and unfamiliar place, a person in a uniform prevents you from leaving… Your mouth is dry and you need a drink

42 What might you be thinking? What might you be feeling? What might you want to happen? What might you do?

43 Part 2: Seeing the whole person “Getting to Know Me” Supporting people with dementia in general hospitals © University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust

44 Aim To present a holistic, person centred understanding of dementia, highlighting a range of factors that may affect a person with dementia in hospital

45 Cognitive Impairment Health Hospital Environment Biography/Life Story Personality The social world: e.g. care, relationships & support while in hospital... The person living with dementia Adapted from Kitwood (1997 )

46 Part 3: Communication “Getting to Know Me” Supporting people with dementia in general hospitals © University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust

47 Aims To explore a range of ways in which staff can adapt their communication approaches (verbally and non-verbally) to compensate for the difficulties experienced by people living with dementia To explore dilemmas when communicating with people who may have a different perception of reality to our own 3.2

48 Part 4: The impact of the hospital environment “Getting to Know Me” Supporting people with dementia in general hospitals © University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust

49 Aims To consider which aspects of the hospital environment can be challenging for people with dementia To explore ideas on practical ways to improve the physical environment

50 Part 5: Knowing the person “Getting to Know Me” Supporting people with dementia in general hospitals © University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust

51 Aims To explore why getting to know the person is essential to the provision of care To introduce the “Getting to Know Me” or “This is me” method of gathering important information about the person To consider creative responses for meaningfully occupying the person To explore how to involve and support families and friends 5.2

52 Mrs Atherton continually appears distressed. She finds it difficult to communicate verbally, but can sometimes be heard calling the name “Joe”. When staff ask about Joe, Mrs Atherton is unable to say.

53 Elizabeth Atherton Beth

54 I grew up in Bradford & moved to Bolton in my 20s when my husband, Joe, got a job working for an engineering firm. I worked for Wilsons - a large bakery - for many years My daughters, Alison and Frances, and my grandchildren. I sometimes call for Joe when I’m feeling upset but he has sadly passed away. I like to walk (I used to be in a walking group) and listen to music – songs from the musicals or any Frank Sinatra. I enjoy art but haven’t painted for a few years. I start the day with a cup of tea and a bowl of muesli. I like to keep busy and don’t like sitting around. My daughters. I am very scared of needles and hospitals! I enjoy being busy and useful. I get lost easily and need help finding my way around.

55 Part 6: A person centred understanding of behaviour that challenges “Getting to Know Me” Supporting people with dementia in general hospitals © University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust

56 Aims To explore meanings behind behaviours that we can find challenging To draw together all six parts of the training To consider the changes staff may make to their practice

57 Delirium Anxiety Visuoperceptual difficulties Cognitive difficulties Side effects of drugs Need for emotional comfort Need to be occupied Differing perception of reality Fear Feeling lost Physical e.g. need for: food, fluid, pain relief, toilet What we see... What we don’t see… The behaviour e.g. shouting /pacing/resisting care… (Adapted from: James, 2011)

58 “Getting to Know Me” - Key Messages See all behaviour as having “meaning” Focus on feelings and try put yourself in the person’s shoes See the person not the dementia Provide opportunities for meaningful activity Think about how best to support and involve relatives Try to help create a sense of security and familiarity

59 Improving care for hospital patients who are living with dementia – next steps… The 3 changes I will personally make are:

60 “Getting to Know Me” study Study Outline Phase 1: Literature review on existing educational materials Phase 2: Design of training materials (and evaluation – to be discussed later in presentation) Phase 3: Diffusion through training the trainers at new sites Phase 4: Final collection of data from new sites and revisions to the “Getting to Know Me” training materials

61 Phase 3 Those who undertook the training the trainers course implemented the training within their Trusts. 35 staff trained 15 (43%): Central Manchester University Hospitals NHS Foundation Trust. 12 (34%): Salford Royal NHS Foundation Trust. 7 (20%): Trafford Healthcare NHS Foundation Trust. The majority of staff were from a nursing background n=22 (63%). This included ward managers, dementia lead nurses and charge nurses. A further 6 (17%) were from a practitioner background and a further 7 (20%) were in a clinical educator role. 8 (22%) were male. 27 (73%) female.

62 “Getting to Know Me” study Study Outline Phase 1: Literature review on existing educational materials Phase 2: Design of training materials (and evaluation – to be discussed later in presentation) Phase 3: Diffusion through training the trainers at new sites Phase 4: Final collection of data from new sites and revisions to the “Getting to Know Me” training materials

63 Results: Phase 2 & 4

64 Participants and outcome measures Staff members working on general hospital wards within the following NHS Trusts: –Royal Bolton Hospital NHS Foundation Trust (phase 2) –Salford Royal NHS Foundation Trust (phase 4) –Central Manchester University Hospitals NHS Foundation Trust (phase 4) –Trafford Healthcare NHS Trust (phase 4) Outcome measures: –Confidence in dementia scale –Knowledge in dementia scale –Controllability beliefs scale (Dagnan, Grant & McDonnell, 2004) –Views about the use of deception with people with dementia (from Elvish, James & Milne, 2010) –Evaluation form

65 Outcome measures (1) Confidence in dementia scale: –nine-item self-report questionnaire –Good internal consistency without too much item redundancy (Cronbach alpha = 0.88, KMO = 0.89) (n=573) –Direction of change consistent with hypotheses and consistent with qualitative comments I feel able to understand the needs of a person with dementia when they cannot communicate well verbally. Not able Somewhat ableVery able __1_________2__________3___________4__________5_______ I feel able to gather relevant information to understand the needs of a person with dementia. Not able Somewhat ableVery able __1_________2__________3___________4__________5_______

66 Outcome measures (2) Knowledge in Dementia Scale: –16-item self-report questionnaire – Good internal consistency (Cronbach alpha = 0.66, KMO = 0.76) (n=573) –Direction of change consistent with hypotheses and consistent with qualitative comments My perception of reality may be different from that of a person with dementia Agree DisagreeDon’t know A person with dementia is less likely to receive pain relief than a person without dementia when they are in hospital Agree DisagreeDon’t know

67 Evaluation of the training programme (phase 2) Participants (n=71) CODE scale: –confidence levels were significantly higher immediately after the training (Median = 35) than immediately before the training (Median = 29), z=-6.13 p<0.001, effect size r=-0.56 KIDE scale: –levels of knowledge were significantly higher immediately after the training (Median = 15) than immediately before the training (Median = 13), z=-4.81 p<0.001, effect size r=-0.44 Controllability beliefs scale: –significant decrease in scores in the post-training condition (t= df=70 p=0.004,) with an effect size d=0.35(=2.79/7.99)

68 Evaluation of the training programme (phase 4) Participants (n=468) –52% (n=242) nurses; 22% (n=103) healthcare assistants; 4% (n=18) physiotherapists/occupational therapists; 1% (n=6) housekeeping staff –82% female –68% reported receiving no prior training in dementia care CODE scale: –confidence levels were significantly higher immediately after the training (Median = 36) than immediately before the training (Median = 29), z= p<0.001, effect size r=0.96 KIDE scale: –levels of knowledge were significantly higher immediately after the training (Median = 14) than immediately before the training (Median = 12), z= p<0.001, effect size r=0.8 Controllability beliefs scale: –significant decrease in scores in the post-training condition (pre-Median = 27, post-Median = 21), z=11.06, p<0.001, effect size r=0.51

69 Qualitative Feedback ‘How to be more aware of seeing the person, rather than the dementia.’ ‘People who have dementia may act in a certain way but there is meaning in every behaviour.’ ‘I will not stick to the normal way of pacifying a dementia patient instead I will attempt to look at the causes and find solutions to these.’ ‘Interaction with other members of the MDT, new ideas of ways of working.’

70 Communication in dementia care Initial analysis on data about the use of the truth and deception suggests findings consistent with current literature: –Definitions of a ‘lie’ –In a person’s best interests: –Risk of harm/neglect –Reduce distress/agitation –Medical care – additional theme –In best interests of other patients/staff – additional theme

71 Conclusions/discussion points (1) Following the “Getting to Know Me” programme, confidence in working with people with dementia increased and knowledge in dementia improved Before the programme, majority of staff described their confidence in working with people as ‘somewhat confident’. Following the training, majority of staff described their confidence as ‘very confident’ Key elements of training – knowledge/confidence in the areas of : i) non- verbal communication (low confidence); ii) understanding anger/aggression (low confidence and knowledge) Importance of peer supervision/group reflection Shorter sessions v one full day Link between staff knowledge/confidence and patient care

72 Conclusions/discussion points (2) The “Getting to Know Me” programme was well-received. It is designed to be accessible and flexible Significant contributions to the design of the training materials were made by people with dementia and relatives The materials are available for free download from (English language only)www.gmhiec.org.uk The materials form part of a more substantive research bid (RCT). Decision expected July 2013


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