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Herefordshire & WorcestershireLocality Stakeholder Board

Promoting good communication with people living with dementia and their families.

Worcestershire Health and Care NHS TrustHerefordshire Primary Care Trust

Association for Dementia Studies, University of WorcesterNorth East Worcestershire College

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First Published in 2011by The Association for Dementia Studies

University of WorcesterHenwick Grove

Worcester WR2 6AJ

UK

© Copyright Worcestershire Health and Care NHS Trust (2011) Stand by Me: DVD assisted education resource for promoting good communication with people living with

dementia and their families. In conjunction with the Association for Dementia Studies, University of Worcester.

This DVD and teaching resource is protected by copyright. Reproduction of this material is covered by copyright. Photocopying of the teaching resource is permitted for the purpose of teaching and learning activities using Stand

by Me. Permission to reproduce its content outside of this original format must be obtained in writing from:

Sandra Brennan, Director of Quality Worcestershire Health and Care NHS Trust

Isaac Maddox HouseShrub Hill Road

WorcesterWR4 9RW

The contribution of NHS Herefordshire, NHS Worcestershire, NHS Herefordshire and Worcestershire Locality Stakeholder Board, The Association for Dementia Studies at the University of Worcester and the Moving Image Department at NEW College should be acknowledged on all published material about Stand by Me. All these

establishments are free to use the material within their own teaching and research activities.

Authorship of the teaching resource materials: Professor Dawn Brooker, Dr Kay De Vries and Isabelle Latham with additional material from: Dr Bernie Coope, Jenny La Fontaine and Cheryl Poole.

All characters and locations identified in the DVD and teaching resource are wholly fictitious and any similarity to any person/s living or dead is unintentional.

British Library Cataloguing in Publication DataISBN - 978-0-903607-03-2

Printed and bound in Great Britain by Pelican Press, Manchester

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Introduction to using Stand by Me

How were the films written? Overview of the six films Expected learning outcomes

Overview: Understanding Dementia and Person-centred Care Understanding dementiaIncidence of dementiaCurrent pharmacological treatments for dementiaHealth, physical fitness and dementiaPsycho-social interventions in dementiaFamily caregiversCapacity, consent and dementiaSafeguarding vulnerable adults from abusePerson-centred dementia careThe VIPS frameworkCommunicating well with people living with dementiaAchieving person-centred communicationReferencesUsing this Resource and Stand by MeInstructions for using the DVD

Film 1: Understand Me – Primary Care Role-play outline What does research tell us about this area? Reflective (VIPS) Questions What would you do? Discussion points and links to other learning References

Film 2: Help Me – Care at Home Role-play outline What does research tell us about this area? Reflective (VIPS) Questions What would you do? Discussion points and links to other learning References

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Contents

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Film 3: Getting to Know Me – Moving into a Care Home Role-play outline What does research tell us about this area? Reflective (VIPS) Questions What would you do? Discussion points and links to other learning References

Film 4: Listen to Me – Emergency Care Role-play outline What does research tell us about this area? Reflective (VIPS) Questions What would you do? Discussion points and links to other learning References

Film 5: Don’t Leave Me – Acute Care Role-play outline What does research tell us about this area? Reflective (VIPS) Questions What would you do? Discussion points and links to other learning References

Film 6: Stay with Me – End of Life Care Role-play outline What does research tell us about this area? Reflective (VIPS) Questions What would you do? Discussion points and links to other learning References

Appendix 1 – Evaluation Process and Forms Appendix 2 – Sample Lesson Plan Appendix 3 – Steering Group and Focus Group Membership Appendix 4 – Film Credits

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How were the films written?

The scripts for the films were constructed from focus group discussions with staff and professionals working across a variety of health and social care settings. Focus groups were also held with people living with dementia and family caregivers . The focus groups helped us to identify several scenarios relating to people with dementia that staff found particularly problematic. We wanted these to reflect very real practice experiences of staff.

Overview of the six films

The initial sections of the DVD include a number of “talking heads” in which experts in the field of dementia care provide a brief overview of dementia, its symptoms and the challenges of good communication. The six films are all between five to ten minutes long. They are designed to be used in conjunction with the background information and the questions for reflection that you will find in this book. Educators and trainers will find them useful in bringing various teaching situations to life.

The first three films focus on the experience of Maggie and Mick. Maggie is a lady in her fifties who is in the earlier stages of dementia and Mick is her husband.

The first time we meet Maggie in Film 1 “Understand Me” she is at home living with Mick. She has a chest infection and is also experiencing problems with her memory. She visits the GP and begins the journey towards diagnosis.

In Film 2 “Support Me”, we meet Maggie and Mick about two years later. Maggie has a lot of problems with continence and needs help with personal care. We meet two very different home carers, June and Kate.

In Film 3 “Getting to Know Me”, Maggie has just been admitted to a care home. Maggie and Mick’s love-story continues through this life-changing transition for both of them. We meet the care workers who are getting to know the couple.

The last three films focus on Marty and Mary and their daughters Elaine and Linda. Marty is aged 80. He already has a diagnosis of dementia which is quite advanced. He is also physically frail.

In Film 4 “Listen to Me”, Marty has had a fall and the emergency services are called. We meet the paramedic team Phil and Sue.

In Film 5 “Don’t Leave Me”, Marty has been admitted to an acute hospital ward. He is cared for by the nursing and medical team and he receives a diagnosis suggesting that his physical condition is terminal.

In Film 6 “Stay with Me”, we see Marty in the final stages of his life, at home with his family receiving care from a palliative care nurse.

Expected learning outcomes

The films are not designed to be viewed as a stand-alone education experience. Indeed, they contain many examples of poor communication and should not be used as a role model for good person-centred care. Instead, the films should be viewed as a role play where health and social care staff demonstrate their experiences. They are designed to stimulate discussion and reflection.

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Using this Resource and Stand by Me

Throughout the rest of this book we use the VIPS framework to encourage reflection on the different aspects of person-centred communication. Each of the 6 films that form “Stand By Me” addresses a different element of the dementia journey and different aspects of the health and social care that may be relevant.

Film 1: Understand Me – Primary Care Film 2: Help Me – Care at Home Film 3: Getting to Know Me – Moving into a Care HomeFilm 4: Listen to Me – Emergency Care Film 5: Don’t Leave Me – Acute Care Film 6: Stay with Me – End of Life

For each film there is a short recap of the role play and then some structured information:

• What research tells us about this areaA summary of the latest knowledge in this particular area.

• “VIPS” reflective questionsQuestions to prompt discussion of the film and reflect on your own practice and service provision. (In general, the “V” and “I” questions are for those leading/ managing services and the “P” and “S” questions for addressing direct communication of frontline staff).

• What would you do? Particular scenarios or situations highlighted by the film that might invite further discussion and consideration amongst staff.

• Discussion points and links to other learning Other issues raised by the films or opportunities to link with other training and professional education.

• ReferencesFor sources and research relevant to each film topic.

This information can be used to structure teaching and learning in any way you think appropriate. For sample lesson plans, see Appendix 2.

Instructions for using the DVD

Technical note: some PC users may experience some difficulty in playing this DVD in their computers. For example, it might play without sound. This may be because Windows Media Player is your default DVD player. This may be remedied by selecting another DVD player in your computer:

• Click “START” in the bottom left corner of your screen.• Click “ALL PROGRAMS” • Select a DVD player, such as “Power DVD DX”

Alternatively, you will achieve best results by playing the DVD in a DVD player.

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Film 2: Help Me – Care at home

This scenario begins with interviews with Gemma Mallett, a social work student and Claire Boulter, a care manager. June and Brian discuss what the best care means for them.

Role-play outline

In this scenario we meet:

• Maggie Hammond who has now been diagnosed with dementia• Mick Hammond her husband who is now her main carer at home• Kiki – the parakeet• Archie – the dog• Kate, a care worker from a home-care provider • June, a care worker from the same home-care provider but with more

experience• Pam, the home-care supervisor

It is about a year after the last scenario. Maggie is living at home with her husband Mick, their dog Archie and Kiki the parakeet. Maggie has been diagnosed with Alzheimer’s disease and is more muddled than when we last met her. She has problems with cooking and housework.

She finds it increasingly difficult to do her own personal care, particularly dressing and have a wash. She is also having problems with continence, seemingly unaware when she has had an accident. Mick is spending more time at home to look after her.

He has help from a home-care provider to have help each day with Maggie’s personal care. In this scenario two different carers, Kate and June, attend Maggie’s home to provide care.

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Reflective Questions

V: Does where we work show value and respect for the experiences of people with dementia and their families?

1) Does our home care service welcome people with dementia and their families?

The two carers show very different approaches to working with Maggie and Mick. This might suggest that it is not a home care service that considers dementia a specialist form of care.

• Would potential service users know that we will accept and help them if confusion and dementia are part of their lives?

• How do we show people we recognise the special skills that dementia care requires?

• How can we make sure that all in the organisation welcome people with dementia, not just one or two?

• What does our organisation do to consider and support the needs of family caregivers as well as the needs of the person with dementia?

2) Do we value good quality direct care for people with dementia and their families?

There are good and bad examples of care demonstrated by June and Kate, suggesting that their organisations have different approaches to dementia care

• What are our attitudes towards people with dementia and their families?

• What language do we use to describe them and their needs?

• Is dementia covered at induction and appraisal?

• Working with families and people with dementia can be emotionally labour intensive. How are staff supported? Who do staff turn to if they are out of our depth?

• How do staff know what to do if they have concerns about the practice of other staff or the organisation?

3) Does our home care service have good lines of communication and consultation to empower staff to act in the best interests of people with dementia and their families?

Kate does not appear to know Maggie’s needs, whereas June is more prepared. If our ability to communicate effectively with each other is poor, our communication with service users is likely to be compromised.

• How are things communicated between members of staff? Is adequate time provided for handovers and communal problem solving?

• What ways do we enable staff to talk about some of the problematic aspects of caring?

• What is the communication like between front-line and senior staff? Are different parts of our service acting in harmony?

• How can we encourage service users to come to us with problems or concerns?

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4) Is our work-force skilled in person-centred dementia care?

June and Kate demonstrate very different levels of knowledge and skill in working with Maggie.

• What training and ongoing development do our staff receive in the needs of people with dementia and their family caregivers?

• How do we support staff to put this training into practice?

• How do we equip staff to apply the principles of the Mental Capacity Act, 2005 in their practice?

5) Generally is our service easy for people with dementia and their families to use?

Often people with dementia will feel at their most relaxed and orientated in their own home with a familiar routine, but they also need flexibility so that their changing needs are met. June and Kate have very different approaches, June’s appears flexible but also time-consuming.

• How can we make sure to provide services that fit with people’s usual and preferred routines rather than expect them to adapt to what suits us?

• What ways do we ensure the practical aspects of our organisation support staff to provide the best care? For example, do they have enough time to complete visits, or have support if they encounter problems?

• How do staff explain their presence in people’s homes when they can’t remember that they need help?

• What ways do we use assistive technology to help people manage in their own homes for as long as they wish?

• How do we capture the needs of family caregivers and what do we do to incorporate them into our care for a person with dementia?

6) Does our home-care service know about and act upon the needs and concerns of people with dementia and their families?

It is easy to think that everything is going well, and assume that people will come to you with concerns. However, the impact of dementia on a person and their family may mean they are not able to come forward. Mick seems very uncomfortable with Kate’s approach and he would be in a position to give important feedback to an organisation.

• How does your organisation know and act upon the views of people with dementia and their families?

• Does it undertake satisfaction surveys, interviews, focus groups or service-user forums?

• How do you make sure these encompass the views of people with dementia and their families when they may not be able to participate in conventional approaches?

• How do you seek out the experiences of people with dementia who may not be able to easily communicate?

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I: Are systems in place to enable staff to get to know the person and to ensure the person feels like a unique individual?

1) Are Maggie’s individual needs and strengths known about?

Preparation for visits should focus on Maggie’s needs and strengths. She needs personal hygiene and dressing support but she is able to say what she likes and doesn’t like. Kate focuses on tasks to be done, whereas June seems to see Maggie more as a person who she needs to find a way to support.

• How do we find out relevant information about a person? What do we do to encourage staff to think beyond the “tasks” of the job?

• Do our plans for care reflect the person rather than tasks?

• How can we encourage staff to share their discoveries and knowledge about a person?

2) Do Kate and June show awareness that Maggie’s needs change over time?

Needs can change during or between visits. June shows a more flexible approach to Maggie and Mick than Kate does and this helps her respond to changes in Maggie.

• How do we equip staff to respond to changes?

• How do we ensure they are not focussed on completing tasks at all costs, and know when to step back?

• What should staff do if someone refuses care that they need? How can we demonstrate that staff apply the Mental Capacity Act, 2005?

• How can we ensure changes in a person are communicated to all?

• What do we do to involve family caregivers in our communication and care planning?

3) Do Kate and June know what personal possessions are important to Maggie?

There are lots of pictures and objects in Maggie’s home. Mick uses these to trigger conversation. June and Kate could both use these to form a rapport with Maggie. Maggie looks well groomed and June uses this to help engage her in the pamper sessions.

• Are staff encouraged to be creative in the way they communicate?

• How do we find out information about important possessions?

• What is the role of family caregivers in establishing this information?

• How can we ensure staff have the opportunity to share the knowledge they gain about a person?

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4) Are Maggie’s individual likes and dislikes and preferences and daily routines known about and acted upon?

Kate ignores Mick’s suggestion that Maggie does not like baths and this results in Maggie ordering her to leave. June asks Maggie personally whether she prefers a bath or shower. When Maggie is resisting, June still offers her choices. Kate arrived after Mick was up and dressed, whereas June visited when both Maggie and Mick were about to get ready.

• What ways do we make staff aware of the importance of individual likes/dislikes when working effectively with people with dementia?

• How do staff practically apply the Mental Capacity Act, 2005 and help to people to make decisions for themselves?

• How can we ensure that our service fits into the routine of a person rather than expecting them to fit with what we have available?

• What do we do to establish and respond to the needs of family caregivers as well as the person with dementia?

• Why might meeting the needs of family caregivers improve the care for a person with dementia?

5) Are Kate and June aware of Maggie’s history and are these used regularly in practice?

Past and present pets are important to Maggie. June picks up on this and shares positive feelings about pets. She shows interest in Maggie and Mick’s relationship. She also uses the names of film stars that Maggie will relate to rather than modern day ones.

• How do we discover meaningful information about a person’s life?

• What skills do staff have to use this information creatively?

• What is the role of family caregivers in establishing this information?

• How do we help them to uncover conversation topics that are relevant to the person?

6) Do Kate and June know how to engage Maggie in an enjoyable activity?

Maggie is at her happiest when she is chatting in a social situation. June uses this to good effect to relax Maggie and build a rapport. Kate does not engage with Maggie other than to instruct her to have a bath.

• How can language and tone of voice make a difference to a person with dementia?

• How do we ensure staff have the time and resources to engage with people effectively?

• How can we ensure that staff are focussed on enjoyable activities rather than merely completing tasks?

• What do we do to support family and friends to be involved in a person’s care but also understand they can step back if they need to?

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P: Have we taken time to understand the perspective of the person with dementia and their family?

1) Do Kate and June check out Maggie’s preferences, consent and opinions?

Kate does not give Maggie any opportunity to voice opinions and she ignores Mick’s concerns. June asks Maggie and checks whether her actions are okay. When Maggie is resisting she offers alternatives and encouragement.

• How can we engage with the person and allow them to freely make choices?

• How do we deal with situations if a person is refusing care?

• What things can we do to try and help a person make an informed decision?

• What should we do if a person does not consent, but we think they are unable to make the decision?

2) What are the main emotions that Maggie and Mick have about having care delivered in their home? Do staff take them into account?

Maggie is shocked to find Kate and June in her home. She is angry and confused, looking to Mick for reassurance but she also gets angry with him. He is also angry with her which causes her to be tearful. Mick is worried, embarrassed, and relieved. He appears close to breaking point, and becomes angry and frustrated, but he also clearly cares for Maggie. Kate does not acknowledge any of Maggie or Mick’s feelings. She talks to Mick about her own problems and makes him feel he has to help her. June responds to Maggie by talking with her and giving her choice and control. She empathises with Mick’s situation and offers him choice about his role but also makes it clear she has the necessary skills.

• What professional boundaries should we be aware of when in others’ homes?

• How can we acknowledge people’s emotions when we are carrying out care?

• What impact might our approach have on others’ behaviour?

• What do we do to discover and respond to the needs of family caregivers as well as the person with dementia?

• What impact might failing to consider the needs of family caregivers have on our work and the life of a person with dementia?

3) Do Kate and June make the physical environment as comfortable as possible for them?

Both Kate and June seem to treat Maggie and Mick’s home as a work-place.

• How can we be respectful of people’s private spaces?

• Do we always accommodate things in the home, even if they make work harder (e.g. Archie). What ways do we use adaptations/technology to help independence?

• How can we ensure that care tasks/equipment do not take over a person’s home?

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4) Are they vigilant about physical health needs that Maggie can’t explain?

There is no sign that Maggie’s continence problems have been investigated but there will be a physical explanation. If it can be managed then it could increase Maggie’s independence, wellbeing and improve her relationship with Mick.

• How do we make sure to notice even small changes in people’s health?

• How might you spot signs of pain and discomfort in a person who cannot tell you what they’re feeling?

• Do we seek advice from medical professionals when needed?

• How do we make sure information does not get lost between different staff?

5) When Maggie becomes distressed do Kate and June respond in an understanding way?

June is very accepting of Maggie’s anger and responds in a warm manner showing that she is trying to understand her feelings. She emphasises to Mick that she does not mind Maggie’s behaviour. Kate does not seem to acknowledge Maggie’s feelings at all.

• How can we ensure we interpret behaviour correctly?

• How do we show that we understand that responding to different behaviours is part of the caring role?

• What can be done to support family care givers in responding to behaviours that they may find difficult?

• In what ways do we support our staff in dealing with difficult situations?

6) Do Kate and June uphold Maggie’s rights as important?

Kate does not appear to acknowledge that Maggie has rights. June shows that Maggie has the right to make choices, but may need support to do so.

• What are our responsibilities under the Mental Capacity Act, 2005?

• How can we encourage a person without taking away their rights to make a choice we don’t agree with?

• What things can we do to help people make choices?

• How do we work with someone when they are making decisions we think unwise?

• What is the role of a person’s family / friends when they may be unable to make a decision or find it difficult to do so?

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S: Are we providing a supportive social psychology to enable the person to feel socially confident and that they are not alone?

1) Do Kate and June help Maggie to feel included and not talked across?

June explains everything to Maggie as she goes along. She has a relaxed pace. Kate talks to Mick not Maggie and ignores Mick’s responses.

• How can we involve a person, even if we are not sure they can provide an answer?

• What impact might body-language, tone of voice and the words we use have on making someone to feel included or excluded?

• What impact might feeling excluded have on someone’s behaviour and well-being?

• What impact may excluding a family caregiver have on the care of a person with dementia?

• What do we do to include a family caregiver our care provision?

2) Do Kate and June treat the couple respectfully and not using a “telling-off” tone or using labels to describe them?

June has a very respectful manner, she is accepting of Maggie’s feelings and behaviour and offers her choice and control. June does not correct her when she gets the names of film stars muddled and she involves Mick in her conversations and work. Kate does not treat Maggie with respect, she refers to her as “this one” as if she is not a person and she does not listen to Mick’s information.

• How might the language and terms we use to describe people affect the way we and others feel about them?

• How can we give a person choice and control in the way we support them, rather than telling people what to do?

• How can we involve a family caregiver in the support we give to a person?

3) Do Kate and June come across as warm and caring and not cold and indifferent?

June makes eye-contact, smiles and makes sure to get down to Maggie’s level. She uses words that are sensitive (“pamper”). Kate appears indifferent to Maggie’s feelings and indicates to Mick that she is a burden.

• How can we make sure we do not to let the difficulties of the job come across to people and their families?

• How can we use body language and tone, not just words, to show warmth?

• How might warm or cold behaviour impact on the person with dementia?

• How might warm or cold behaviour impact on a family caregiver?

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4) Do the couple both know that Kate and June have taken their fears seriously and not left them alone for long periods in emotional distress?

Kate does not appear to realise that Mick or Maggie might be distressed by the situation, her actions suggest Maggie is a burden. June is accepting of Maggie’s fears and resistance and adapts her actions. She acknowledges Mick’s need for a break and his anxieties about handing care over to others.

• How can we make sure our care attends to people’s emotional needs not just physical ones?

• In what ways do we adapt our actions to respond to fears or distress?

• Are there any organisational constraints that might get in the way of us attending to people’s distress and fear? How can we get around them?

• What do we do to establish and respond to the concerns or fears of family caregivers?

5) Do Kate and June help Maggie feel active in her own care rather than just making decisions on her behalf without communicating with the couple?

June involves Maggie in decisions and she appears happy and relaxed following her shower. The phrases June uses allow Maggie to think about the experience differently (“pamper”, “help if you need it”) and so take more control. Kate takes control away from Maggie completely.

• How can we help a person feel in control of their care?

• What effect might taking away choice and control have on a person with dementia?

• What role do family caregivers have in helping us to involve a person with dementia in their care?

• What ways might our words or approach help someone to think differently about a situation of personal care?

6) Do Kate and June help the couple use local facilities and make sure that she is supported to stay in touch with people and activities they value?

We do not know much about Maggie and Mick’s social situation, although June recognises Mick’s need to get out of the house.

• Do we always consider the life of people beyond our input?

• What actions can we take to help maintain someone’s social network?

• How can we adapt our service to help a person and their family/ friends maintain or establish a social life? (e.g. timing of visits).

• What local facilities are there for people with dementia in our area?

• What local facilities are there for family caregivers in our area?

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What would you do?

• At the end of the visit with Kate, Maggie responds angrily saying “Go on, piss off – get out of my house!” If you were in Kate’s position, how would you react to this statement? What would you do? What would you say? How would you finish the visit?

• You can see a clear difference in the way Kate and June communicate and behave whilst in Maggie and Mick’s home. If you became aware that someone was working in the way Kate is here, what would you do? What actions would you take? How can you encourage people with dementia and their families to tell you if they do not like the way things are being done?

• Mick is showing some signs that caring for Maggie could be difficult at times. How would you ensure that Mick is getting the support he needs to do this? Are there any other services that you could signpost Mick to? How could you ensure Mick’s needs are not ignored because of Maggie’s need for support?

• Mick is obviously finding it hard to cope with caring for Maggie sometimes. What would you do if you found unexplained bruising on Maggie’s arms when you were helping her have a shower? What would you do if you saw Mick shouting at Maggie or shaking her roughly? What if Maggie told you she was scared of Mick?

• There is some tension here between Maggie’s apparent needs (for personal care) and what she appears to want (shown through her words and behaviour). If you were in a situation like this, how would you seek to resolve the tension? What steps would you take? How can you assess whether Maggie has capacity to make a particular decision? What actions should you take if Maggie is not able to make such a decision and she continues to resist offers of help?

Discussion points and links to other learning

• This scenario illustrates how complex safeguarding issues can be. Mick clearly cares deeply for his wife, but the situation can make him frustrated and he can take it out on Maggie. These complexities can make it less likely that concerns will be identified (as we can sympathise with Mick’s situation) or result in conflicted feelings about how to respond. How do your local area safeguarding adults procedures instruct you to respond? Does safeguarding adults training address these areas of ambiguity? How can you ensure that concerns are raised at the right time and in a way that avoids assumptions or actions that might downplay or exaggerate risks?

• The actions in this scenario show many examples of good and creative interaction with someone with dementia. What can be done to encourage this creativity? It does not always come easily, and staff may need support to learn skills and relevant information.

• This scenario highlights the need for all staff to understand how to put the Mental Capacity Act, 2005 into practice. The responsibility for supporting decision-making, assessing capacity, and responding to a lack of capacity lies with the person who is concerned with the individual when a decision needs to be made. In many situations this is frontline care and support staff, [146].

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© Copyright Worcestershire Health and Care NHS Trust (2011) Stand by Me: DVD assisted education resource for promoting good communication with people living with

dementia and their families. In conjunction with the Association for Dementia Studies, University of Worcester.