Promoting excellence in supporting people through a diagnosis of dementia: Facilitators guide

ContentsWelcome!................................................................................................................................1

What is the background to this guide?................................................................................1

How is the guide structured?................................................................................................1

Features of the guide............................................................................................................2

How to use the guide............................................................................................................3

Accessing DVD video material.............................................................................................3

DVD Content........................................................................................................................4

Who should be facilitators?..................................................................................................5

Participants.............................................................................................................................5

Delivering a learning session...............................................................................................6

Module 1. Understanding personal outcomes-focused approaches................................7

Module 2. Before diagnosis..................................................................................................9

Noticing changes and approaching services........................................................................9

The importance of empathic listening.................................................................................12

Considering the needs of the practitioner...........................................................................14

The ‘Five Areas Model’.......................................................................................................14

Module 3. Receiving a diagnosis........................................................................................17

Module 4. Living well with dementia..................................................................................19

Impact of diagnosis on family and relationships.................................................................19

Personal outcomes–focused approaches to supporting people with dementia following a diagnosis............................................................................................................................21

Developing a collaborative relationship..............................................................................23

Understanding adjustment..................................................................................................25

Risk enablement.................................................................................................................25

Mediation............................................................................................................................27

Closing the learning session..............................................................................................28

Day 2 learning session........................................................................................................28

Appendix 1............................................................................................................................29

How the DVD resource is used across the learning sessions............................................29

Appendix 2............................................................................................................................30

Learning activity preparation – day 2..................................................................................30

Welcome!Welcome to Promoting excellence in supporting people through a diagnosis of dementia: Facilitators guide. The guide is designed to enhance your ability to facilitate the planning and delivery of training to enable others to better support people through a diagnosis of dementia. It is intended to be used in conjunction with Promoting excellence in supporting people through a diagnosis of dementia - Enhanced practice resource and the accompanying DVD.

What is the background to this guide?In the first Scottish National Dementia Strategy (2010) the Scottish Government committed to improve the experience and quality of support offered to people with dementia following a diagnosis. A further commitment was made in 2012 to support a one year guarantee of post diagnostic support based on the Alzheimer Scotland ‘5 Pillar model’. To support the implementation of these key changes the Scottish Government introduced a HEAT target in 2013 which stated that “all people newly diagnosed with dementia will have a minimum of a year’s worth of post diagnostic support coordinated by a link worker, including the building of a person – centred support plan.”

During this time NHS Education for Scotland (NES) and Scottish Social Services Council (SSSC) have taken forward a range of educational actions to support this commitment with much of the focus on piloting training within the Dementia Demonstrator Sites1. The evaluation of this pilot training programme informed the content and design of the national learning resource Promoting excellence in supporting people through a diagnosis of dementia - Enhanced practice resource produced by NES/SSSC in April 2014. It also informed the design of this guide and DVD resource to support further roll out of training and development across Scotland.

How is the guide structured?The Facilitators guide forms part of a toolkit consisting of:

Promoting excellence in supporting people through a diagnosis of dementiaEnhanced practice resourceThe learning resource focuses on the key knowledge and skills needed to use a personal outcomes-focused approach to support people with dementia and their families and covers a range of issues. You can access the resource at http://www.nes.scot.nhs.uk/education-and-training/by-theme-initiative/mental-health-and-learning-disabilities/publications-and-resources/publications-repository/promoting-excellence-in-supporting-people-through-a-diagnosis-of-dementia.aspx.

Promoting excellence in supporting people through a diagnosis of dementiaFacilitators guide (this document)

Promoting excellence in supporting people through a diagnosis of dementiaFacilitators guide: DVD

1 The Dementia Demonstrator sites are three health and social care partnerships which are working with the support of a range of national programmes to demonstrate that whole system redesign can deliver better care for more people with the same or less resource [http://www.knowledge.scot.nhs.uk/dementia/communities-of-practice/dementia-demonstrator-sites.aspx]

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This DVD resource contains interview accounts from people with dementia and family members and dramatisations about the experiences of people with dementia and their families engaging with services.

Supporting people through a diagnosis of dementia (Facilitators) Community of PracticeThis is an online Community of Practice which is a tool to facilitate communication, information sharing and collaborative working between colleagues across organisational boundaries. You can access the Community of Practice at: http://www.knowledge.scot.nhs.uk/supportingpeopledementia.aspx where you will find a range of additional resources to support delivery of training.

The content of the facilitators guide focuses on activities for use in delivery of the learning sessions. The guide and DVD resource should be used in conjunction with the enhanced practice resource and aims to engage participants in experiential learning and provide a sustainable resource for the support and dissemination of education and training at a local level. The guide follows the same structure as the enhanced practice resource and consists of 4 modules:

Module 1. Understanding a personal outcomes-focused approach

Module 2. Before diagnosis

Module 3. Receiving a diagnosis

Module 4. Living well with dementia

(Note to designer – this should be same format as in page 9 of enhanced practice resource)

The focus is on practical application of the learning, reflective practice and putting learning into action. To that end, the learning activities within each module are in addition to those in the enhanced practice resource and are designed for use in facilitated group learning. Within each module there are interviews with people with dementia and their families as well as practice based scenarios. These are intended to be stimulating, engaging and facilitate group discussion to enable participants to reflect on and articulate their own beliefs and views, negotiate shared meaning and develop opportunities to change practice.

Features of the guideThere are several features that you will see throughout the guide:

Learning activity

These activities have been designed for use in delivery of the learning sessions and point participants to both the DVD and enhanced practice resource. They are designed for use in facilitated group learning.

Notes for Facilitators

These notes provide Facilitators with suggested responses and key learning points for the learning activities.

Video clip

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Throughout the guide there are notes on which section of the DVD resource to access, either interview clips or dramatisations about people with dementia and their experience of engaging with services.

Clock for running times

The clock symbol depicts the running time for each clip.

Learning session preparation – day 2

Throughout the guide there are learning session preparation sections which should be given to participants at the end of day 1.

How to use the guideThe enhanced practice resource has been designed so that it can be studied in a way that involves elements of self-directed learning and reflection. However, because of the complexities and action focus of supporting people through a diagnosis, it is essential that learners have opportunities to participate in group discussion as part of a learning session.

It is important that the modules are delivered consecutively, as each module builds on and develops the one preceding it. Within each module there are learning activities using both the enhanced practice and DVD resources and notes for facilitators with suggested responses and key learning points for each learning activity. While video materials follow the learning resource content you may choose different interview materials depending on the focus of your learning session which you may adapt to respond to the needs of the participants.

Accessing DVD video materialThis DVD can be viewed on a DVD player or via a pc or laptop.

When you insert the DVD it will automatically open on the introductory screen. Selecting the 'Main menu' button at the bottom will then give you the option of selecting the content of the modules. To view the content click on the white square to the left of the module options. Within each module there are two options to choose from:

Interview resource – this contains interview accounts from people with dementia

and family members. Drama resource – this contains stories and dramatisations about people with

dementia and their experience of engaging with services. The characters and

practitioners are fictitious although the stories and experiences reflect those of real

people with dementia.

The DVD video content also offers full English subtitles which can be toggled on or off from the main menu screen. If viewing on a DVD player you can do this with the remote control. If viewing the DVD on a pc or laptop, select ‘DVD menu options’ at bottom of the screen, go to ‘special features’ then ‘captions’ and choose ‘English’ as the option. A button will appear next to this option to show you have selected it.

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Instructions for accessing the relevant video material are available within each module of this guide and a detailed breakdown of how the DVD resource is used across the learning sessions is available in Appendix 1.

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DVD content

The full content of the DVD is listed below along with running times for each section:

Module 2 / Before diagnosis

Interview resource

Noticing early changes and approaching services (16:10)

Drama resource

Scenario 1A – First conversation with Peter (02:45)

Scenario 1B – First conversation with Peter (03:57)

Module 3 / Receiving a diagnosis

Interview resource

Receiving a diagnosis (14:52)

Improving the experience of diagnosis (09:26)

Drama resource

Scenario 2 – Lisa’s perspective (01:10)

Scenario 2 – Communicating a diagnosis (06:41)

Module 4 / Living well with dementia

Interview resource

Living well with dementia (10:26)

Impact of diagnosis on family and relationships (02:30)

Improving experiences for families and carers (06:13)

Understanding adjustment (05:15)

Risk enablement (07:15)

Drama resource

Scenario 3 – First conversation with Ian (03:55)

Scenario 4 – Ian’s perspective (01:35)

Scenario 4 – Fourth conversation with Ian (04:24)

Scenario 4 – John’s perspective (01:37)

Scenario 5 – Mediation session with Ian and Andrew (09:22)

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Who should be facilitators?This toolkit can be delivered by experienced trainers / facilitators with expert knowledge and skills in facilitating. Ideally you will have a qualification in education or work within practice development or practice education. For facilitators who do have limited experience of adult learning, the principles and features of adult learning are available on the Community of Practice along with a range of other support materials including handouts and examples of training plans.

The number of facilitators required to deliver the programme will vary depending on the number of participants, however it is recommended that at least one facilitator is practicing at Promoting Excellence Expertise in dementia practice level in relation to supporting people through a diagnosis of dementia.

It is important to be aware that some participants may have personal experience of friends or family who are living with dementia. It is vital that facilitators are sensitive to this possibility and one facilitator should be identified to support anyone who may experience distress. It is good practice to highlight a health warning and inform participants that should they find anything in the session which causes any distress they should inform the facilitators or leave the room. You should identify which facilitator will be available to provide support to participants.

Before using this facilitators guide you should be able to:

Apply knowledge and understanding of Promoting excellence in supporting people

through a diagnosis of dementia - Enhanced practice resource to the learning

environment.

Facilitate others to acquire the knowledge and skills outlined in Promoting excellence

in supporting people through a diagnosis of dementia - Enhanced practice resource.

Effectively utilise a range of teaching and learning methods, techniques and

resources to facilitate learning specific to the learning resource.

ParticipantsThe target audience for the training are health and social care professionals working with people with dementia and their families before, during and following a diagnosis. A requirement for attendance on the training is that participants are at enhanced dementia practice level of promoting excellence and this assumes therefore that they have completed Dementia Informed and Dementia Skilled: Improving Practice learning resources. For this reason it is important to acknowledge that participants may be familiar with much of the content of the learning materials. However this will be an opportunity to reflect and examine

current practice and influence others to implement changes in practice.

Before attending the day 1 learning session you should inform participants that they are expected to complete the following learning activities:

Complete the enhanced practice resource

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Access the DVD Module 2 / Before diagnosis / Interview resource / Noticing early

changes and approaching services at (insert link) (16:10).

Ask participants to identify common themes and key differences in the accounts

given by people with dementia and their families. They will have the opportunity to

share their observations at the learning session during group discussions relating to

noticing changes in module 2.

Delivering a learning session It is recommended that the programme is delivered in a one day learning session with a follow up day (day 2) six to eight weeks later. Further information about day 2 including learning session preparation which should be issued to participants at the end of day 1 is detailed in Appendix 2.

To maximise learning opportunities, the ideal number of participants for these learning sessions is up to 20 people. This will allow four groups of five people to work in small groups using a cabaret style layout. Suggested learning session plans will be made available on the Community of Practice.

A key element of Promoting Excellence is living well with dementia and we would suggest that you open your learning session with a clip which demonstrates this:

Module 4 / Living well with dementia / Interview resource / Living well with dementia / Henry and Ann (00:00 – 03:28).

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Module 1. Understanding personal outcomes-focused approaches

Introduction

This module introduces the concept of personal outcomes-focused approaches to working alongside people to support their health, well-being and quality of life. It sets the tone for some of the issues explored in later modules, where personal outcomes-focused approaches are applied to supporting people with dementia and their families before, during and following a diagnosis of dementia.

Participants will have worked through this module and completed the learning activities to enhance their knowledge in this area prior to attending the programme.

It is important to revisit the learning outcomes for module 1 before proceeding further - you may want to use a PowerPoint presentation or handouts to facilitate this.

Learning activity – day 1

Identifying personal outcomes

The following learning activity will enable participants to reflect on their learning and to adopt personal outcomes-focused approaches throughout the training.

For this activity you should ask participants to discuss the topic(s) in their groups and capture feedback on flipcharts:

Having completed Module 1 of the learning resource and based on your own

experience, reflect on your own understanding of what a personal outcomes-focused

approach is, and how you came to this understanding.

Can you give an example of how you have worked with a person with dementia

towards an outcome that was important to them?

Ask each group to feedback a couple of points in response to each question before opening up to wider discussion.

Notes for Facilitators – day 1

Identifying personal outcomes

Suggested responses and key learning points

Feedback from the groups may include some common errors to avoid when identifying outcomes. These are detailed in module 4 on page 56 of the enhanced practice resource. Some additional examples are detailed below.

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Identifying an output (activity or service) rather than a personal outcome e.g. a referral for occupational therapy is an output. If someone suggests a service as an outcome, it can be helpful to ask why, or what the purpose of the referral is to get to the outcome. It may be that the referral for occupational therapy is mentioned because the individual wants to be able to get out of the house and reconnect with their community. Asking why the service is needed can help to clarify the outcome.

Identifying outcomes at a high, generic level e.g. saying that someone wants to feel safe is an outcome, but identifying the personal outcome requires more detail. It may be that a person feels safer when they are in the company of at least one other person and that avoiding the person being left alone for any length of time is necessary to avoid distress. Asking for more detail (e.g. “can you tell me a bit more about that?”) in response to identification of a high level outcome can help to personalise the outcome.

Identifying professional goals rather than personal outcomes e.g. identifying ‘left side gait improvement’ as an outcome reflects the professional goal. The priority with a personal outcomes-focused approach is to identify what the personal outcome is first and then, where appropriate, to link professional goals in. It may be that an individual wants to improve their confidence and overcome their fear of going outside to access the local community following a fall. Left side gait improvement may play a role in achieving the outcome, but it may be that other support is required too. Asking about the person’s own hopes can help to separate professional from personal outcomes.

Identifying services only, rather than considering the role of the person/family e.g. in the above example it is likely that the person will have a role in practising exercises required to achieve left side gait improvement and to build up confidence towards going outside. It may also be that the person wants a family member to support them until their confidence builds up. Acknowledging the roles of everyone involved is important as part of an enabling/strengths based approach, and simply asking what the role of the person/family want to play can help.

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Module 2. Before diagnosis

Introduction

This module explores some of the early changes people experience and some of the reasons why people may be reluctant to approach services. It also looks at the benefits of personal outcomes-focused approaches in supporting the person and their family through the assessment process. Participants will have gained an understanding of how the person with dementia and their families may be better prepared to adjust to ongoing changes if they can access personal outcomes-focused assessment and support in advance of receiving a diagnosis.

It is important to revisit the learning outcomes for module 2 before proceeding further - you may want to use a PowerPoint presentation or handouts to facilitate this.

Learning activity – day 1

Noticing changes

Prior to attending the day 1 learning session, you will have asked participants to view a clip from the DVD and complete the following learning activity:

Module 2 / Before diagnosis / Interview resource / Noticing early changes and approaching services (16:10)

In groups ask participants to discuss the common themes and key differences that

they identified in the accounts given by people with dementia and their families

Ask each group to feedback a couple of points before opening up to wider discussion.

Notes for Facilitators – day 1

Noticing changes

You will find information relating to early changes in dementia on pages 23-24 of the enhanced practice resource.

Noticing changes and approaching servicesHaving noticed these early changes people may consider approaching services. The enhanced practice resource emphasises the importance of the first conversation in having a decisive influence on the person’s approach to and engagement with services. To enable participants to appreciate how they can support the person to have a more positive experience through their own attitudes, behaviour and actions you should conduct the following learning activity using Peter’s story.

Participants will be familiar with Peter’s story from module 2 of the enhanced practice resource and they will have considered the potential implications of early diagnosis for him

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as a younger person in learning activity 2.3. Ask participants to refamiliarise themselves with Peter’s story which you can provide as a handout. You can find this on the Community of Practice.

Peter’s story

Peter is a 48-year-old accountant who works for a private company. He is married with two children; a girl aged 10 and a boy of 14. His parents live close by and his wife works full time as head teacher of a primary school. Peter has a keen interest in science and technology and enjoys wind surfing and scuba diving.

Peter’s wife has recently noticed that he has difficulty finding words and has told her the same story on more than one occasion. He is usually a happy, sociable person, but over the past few months has become more irritable and less interested in meeting up with friends.

Peter went for a walk while on a family holiday two months ago, but had to phone his wife to collect him, saying that he did not feel well. He refused to see a doctor and claimed he felt better after resting for a couple of hours. Since their return from holidays, Peter’s employer has brought to his attention the fact that he has not authorised monthly payments on behalf of the company for two months.

Learning activity – day 1

First conversation with Peter

Show participants: Module 2 / Before diagnosis / Drama resource / Scenario 1A / First conversation with Peter (02:45)

In their groups participants should take a few minutes to consider the following questions:

What is your view of John’s approach?

What is the impact of John’s approach?

What may have influenced John’s approach?

Ask each group to feedback a couple of points in response to each question before opening up to wider discussion.

Notes for Facilitators – day 1

First conversation with Peter

Suggested responses and key learning points

What is your view of John’s approach?

John is obviously unprepared and distracted. Before arrival John should have ensured he had read all available information and set aside time for the interview.

John also displays poor listening skills and a lack of empathy and sensitivity. For example:

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“Really! Well anyway, I’m here to follow up on that and I’ve a couple of questions here I need to ask you.” Here John pre-empts any agenda that Peter may have by presupposing the purpose of the meeting. He establishes what he wants from the meeting further boxing Peter in.

As Peter speaks about changes and holidays John is distracted and does not maintain eye contact and poses two different questions in quick succession.

John’s interjection that he has been to Croatia is extremely poor. While self disclosure is an important element in establishing a relationship it needs to be balanced and appropriate. Generally people do not wish to hear about the practitioner’s holidays, new car etc.

What is the impact of John’s approach?

We can see from Peter’s body language and responses that he has become disengaged with the conversation. A possible consequence of this may be that Peter does not access further assessment until the situation deteriorates or reaches a crisis point.

What may have influenced John’s approach?

Suggestions from the group might include:

John may have negative beliefs about dementia which will lead to blocking or distancing behaviour preventing him from being fully present in the conversation. Use the newspaper example in page 22 of the learning resource to generate views.

John’s mindset when he visits Peter:

He may be thinking about the need to make the visit brief and how to get the assessment complete.

He may have other appointments, a very full diary and be feeling under pressure.

As well as being caught up with his own concerns, other reasons could include that John is under pressure from his organisation to offer value for money and limit the amount of time allocated to each visit. An organisational focus on targets and poor behaviour are being rewarded, for example, the speed at which people are discharged from your service.

While all professionals aspire to being person centred these factors build up a sense of anxiety resulting in cognitive dissonance. In order to be able to manage the complexities of the job and demands on our role we can adopt coping strategies. This will not be new to the group but it is important for them to be aware to consider how using these strategies prevent us from fully attending to the person.

It is sometimes easy to imagine that when practitioners are not picking up on verbal and non verbal cues that this is in fact a lack of skill or empathy on their part. It is possible however that practitioners under pressure develop a skill set that helps to close down conversations and keep emotion at bay.

The group may also consider whether John is thinking about how to close down any discussion.

You should ask the group if they believe that all poor practice is due to a lack of skill or is some poor practice actually a skill set utilised to close conversations down and keep emotion at bay.

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People are regularly sending out ‘invitations’ and we have the power to accept or refuse these. For example we see Peter describe his problems of being lost on holiday and having trouble with his dishwasher. His facial expression and manner suggests a man desperately seeking solace and compassion however John declines the invitation to engage with Peter’s distress. It is difficult to tell from the clip whether this was intentional or because he was oblivious to it but either way it was not the optimal response.

We would want participants to leave this session with the confidence to accept the ‘invitation’.

Is the practitioner being assessed?

Conversations and information-gathering are fundamental elements in the assessment process and in the development of your relationship with people and their families. However it is also important to appreciate that while you are engaging in conversation it is inevitable that the person with dementia and their family are also assessing you. We can sometimes forget this.

If we look at this within the context of scenario 1A we can see that John is being assessed by Peter:

John states: “Good – how are you anyway? Ok. So you’ve got some problems you spoke to your GP about and that’s why I’m here – yes?”

John’s non verbal communication is not congruent with his words. John is being assessed by Peter, even though John thinks he is doing the assessment! Peter’s assessment of John is revealed by his body language or non verbal communication.

What interests John is important to Peter. He notices that John ignores certain statements but gets very interested in others thus increasing their significance in Peter’s eyes. By enthusiastically writing as soon as Peter mentions that he got lost on holiday, John has made this statement figural. John could equally have got enthusiastic about the fact that Peter still manages to go on holiday, still has a great relationship with his wife and is still doing a range of challenging sports and hobbies.

What we see is that Peter is desperately looking for solace. When people meet an ‘expert’ as they see it, one of the many unspoken questions is ‘Is this normal?’ or more accurately ‘Am I normal’? Peter wants to know if having bother with the dishwasher is very bad news or merely typical and not a problem. This is another demonstration of John’s lack of empathy and sensitivity.

Good practice suggests that a key outcome of communication in this circumstance should be for the person to be reassured of the normality of their reaction or experience.

The importance of empathic listeningWhen people are in distress they do not necessarily expect the professional to provide them with amazing solutions to problems and difficulties. Nonetheless it has long been known and reported that people benefit greatly from simply being listened to empathically. This effect is so powerful that many believe empathy to be the foundation of any intentionally helpful conversation. Practitioners can lose sight of this truth and feel a sense of failure when they can offer no solutions to life’s complex problems. However the good news is that attending empathically to distress is an effective intervention in its own right. Never undervalue your ability to give the gift of compassionate attending.

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You need to believe that attending empathically is an intervention.

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Learning session preparation – day 2

First conversation with Peter

At this point you should inform participants that after attendance at day 1 learning session they should access a clip on the DVD which provides a good practice example of the first conversation with Peter. They will be expected to complete the learning activity (detailed in Appendix 2) which will be discussed during day 2:

Module 2 / Before diagnosis / Drama resource / Scenario 1B / First conversation with Peter (03:57)

Considering the needs of the practitionerIt is very difficult to offer effective help to others if we do not consider our own needs. We have already looked at some of the influences on practitioners and the following learning activity will allow participants to reflect on how their thoughts, emotions and behaviours affect conversations.

We may not be able to change these influences but it is important to be aware of them and find practical ways to help us improve our communication. The ‘Five Areas Model’ developed by Professor Chris Williams2 provides a helpful structure to identify changes we may want to make. Participants may already be familiar with this model but it may be useful to provide a handout and this will be available on the Community of Practice.

The ‘Five Areas Model’The five interdependent areas show that what a person thinks about a situation may affect how they feel emotionally and physically and also alter what they do. Making changes in any of the areas leads to benefits in the others. The 5 areas are:

Situation, relationships and practical problems (the people and events around the

person)

Altered thoughts (cognitions)

Altered emotions (feelings)

Altered physical feelings (churning stomach tense shoulders, etc.)

Altered behaviours (actions)

These can be represented in a diagram:

2 Williams (2014). Overcoming depression and low mood book series. Five Areas: Glasgow www.fiveareas.com.The term five areas is a registered trademark of Five Areas Resources Ltd (www.fiveareas.com) and is used with permission.

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Williams (2014). Reproduced with permission

Introduction to the Five Areas approach

The Five Areas approach suggests we consider the overarching situation (the first area) and each situation we face will trigger responses or changes in each of the four remaining areas.

In this context:

Situation – visiting Peter to discuss his memory problems.

We have already noted John’s approach and potential influences in the last learning activity and these can be divided into cognitive, physical, emotional and behavioural responses.

When considering the needs of the practitioner it is helpful for us to know that a change in any one of the areas will trigger change in the other parts. This can help with self awareness and by breaking the problem into 5 component parts can offer ideas about how to make a change. For example the practitioner could breathe more deeply, (behavioural and physical). They could also think ‘of course I don’t have easy answers to Peter’s problems; there are no easy answers so at least I can just be compassionate’.

Learning activity – day 1

The Five Areas model

There are two parts to this learning activity.

Part 1

Ask the whole group to reflect on and share examples of when they were in conversation with someone and were aware that they were not fully attending to the person. Some participants may not feel comfortable undertaking this activity and it would be helpful if the Facilitators shared their own experiences first. Ask for 3-4 people to volunteer to share their example with the whole group and identify triggers and areas changed in relation to ‘the five areas model’.

Part 2 - Checking in on yourself

Ask the whole group to undertake the following exercise as you provide the instruction using a calm tone and slow pace.

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Take a couple of minutes.

Sit still and quiet, notice your breathing (without judging it) and bring your attention to

any thoughts that may have been causing some mild anxiety or irritation. You may

prefer to think about wellbeing and peace.

Think about what feelings are associated with the thought. Are they anger, fear

sadness, joy?

What does this cause behaviourally? Tense shoulders, frowning, smiling or relaxed?

And what about your physical body? Are you getting a wonderful sense of wellbeing

or the build up to a headache?

Part 3

Ask the whole group for 2-3 volunteers to feed back on how they felt about this exercise:

Is it something they would find helpful to undertake before meeting someone if they

were feeling anxious or under pressure?

Do participants have any techniques that they already use and wish to share with the

group?

If you start smiling to yourself you will trigger other changes and perhaps end up with something to really smile about?

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Module 3. Receiving a diagnosis

Introduction

This module explores how to sensitively and empathically communicate a diagnosis of dementia to the person and their family. It highlights the importance of an outcomes-focused approach in preparing the person and their family in advance of receiving a diagnosis and how this can positively influence their response and adjustment to ongoing changes.

It is important to revisit the learning outcomes for module 3 before proceeding further - you may want to use a PowerPoint presentation or handouts to facilitate this.

Communicating a diagnosis is never easy but it is important that the practitioner feels confident and comfortable in his or her ability to do so effectively. To remind participants of the best practice approach you should re-cap on the 5 key steps detailed in pages 35-39 of the enhanced practice resource. You may want to use a PowerPoint presentation or handouts to facilitate this.

The 5 key steps to effectively communicating a diagnosis of dementia and supporting and guiding the person and family towards a positive outcome are:

prepare for the discussion about diagnosis

provide timely and accessible information

respond to emotions

promote hope

arrange follow-up discussion

Having worked through the module participants are likely to concur with the approach as good practice and believe that this represents current practice. In the following learning activity we will hear from people with dementia and their families about their experience of receiving a diagnosis. This will enable participants to reflect on the 5 key steps to effectively communicating a diagnosis of dementia and provide an opportunity to explore the practitioner’s own perspective.

Learning activity – day 1

5 key steps

Show participants Module 3 / Receiving a diagnosis / Interview resource / Receiving a diagnosis (14:52)

In their groups participants should consider:

To what extent the five steps were followed in relation to the account given by people

with dementia and their families in the video.

What may have influenced the practitioners to communicate a diagnosis in this

manner?

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Ask each group to feedback responses to each question before opening up to wider discussion.

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Notes for Facilitators – day 1

5 key steps

Suggested responses and key learning points

The common themes that emerged from the interviews highlighted:

Lack of preparation on the part of the practitioners.

Practitioners appeared to lack empathy and sensitivity.

Practitioners used negative language when communicating the diagnosis for

example ‘I’m afraid it is dementia’.

There was no attempt to convey hope.

There was a lack of information.

Information that was given was inaccurate.

Timely follow up was not offered.

What may have influenced the practitioners to communicate a diagnosis in this manner?

The main factors influencing practitioners and the actions practitioners should take to increase their confidence in communicating a diagnosis are detailed on page 35 of the enhanced practice resource. Essentially, practitioners find disclosing a diagnosis extremely difficult and stressful. They report that this is mainly related to the stigmatised nature of dementia, the emotional aspects and the impact on families. As a result they will tend to avoid using the word dementia and opt for euphemisms such as ‘confusion’ or ‘memory problems’ in an attempt to reduce the negative understanding of dementia. The implication of using vague terms are that the person with dementia and their family cannot interpret them, they are unable to make informed decisions based on a diagnosis and they serve to exacerbate the stigma surrounding dementia.

It is important to remember that communicating a diagnosis is an ongoing process and by using the word dementia at the pre-assessment stage this provides an opportunity to sensitively explore the person’s understanding of dementia. It also enables the person and their family to discuss their thoughts and fears and make the best decisions for them and their situation.

Learning session preparation – day 2

Communicating a diagnosis

At this point you should inform participants that after attendance at day 1 learning session they should access a clip on the DVD which provides a good practice example of Lisa communicating a diagnosis of dementia to Peter and his wife Linda.

Module 3 / Receiving a diagnosis / Drama resource / Scenario 2 / Communicating a diagnosis (06:41)

They will be expected to complete the learning activity which is detailed in Appendix 2.

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Module 4. Living well with dementia

Introduction

This module explores the impact of receiving a diagnosis on people’s social and emotional well-being. It also considers how an outcomes-focused approach can enable people to continue to live well with dementia, support them to stay connected with their communities and plan for the future.

Having completed this module participants will appreciate that the central consideration in working alongside the person and their family to enable them to live well with dementia is to recognise the social and emotional impact of the diagnosis and support them to adjust to their life with dementia. The factors that contribute to a person living well with dementia are detailed in pages 41-43 of the enhanced practice resource.

It is important to revisit the learning outcomes for module 4 before proceeding further - you may want to use a PowerPoint presentation or handouts to facilitate this.

Impact of diagnosis on family and relationshipsIt is also important to recognise the impact of a diagnosis on family members. They may be more devastated by the diagnosis than the person with dementia. The sense of loss can sometimes be even greater than if they had experienced bereavement.

Show participants the interview where Ann tells us about her own sense of grief after her husband Andrew was diagnosed with Vascular Dementia:

Module 4 / Living well with dementia / Interview resource / Impact of diagnosis on family and relationships (02:30)

Participants should reflect on Ann’s experience when undertaking the next learning activity.

Family members may also have different perspectives, hopes, expectations and needs. They may experience changes in their relationship and role as well as the transition to becoming a carer all of which can impact negatively on their health and wellbeing. While it is important to support the autonomy of the person with dementia this should not be at the exclusion of family members.

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Learning activity – day 1

Working with families and carers

When we are working alongside the person with dementia to identify and record their priorities for the future we may find that family involvement in these conversations can raise sensitive and complex issues.

This learning activity is in two parts.

Part 1

In their groups ask participants to share some of the issues that they have experienced with involving family members when working alongside the person with dementia to identify and record their priorities for the future. Ask each group to feedback key issues.

Part 2

Show participants the interview on the DVD where we hear from Ann about her experience with various professionals who were working alongside her husband Andrew following his diagnosis:

Module 4 / Living well with dementia / Interview resource / Improving experiences for families and carers (06:13)

After watching the interview you should ask the whole group for their thoughts on what they have heard from Ann.

Notes for Facilitators – day 1

Working with families and carers

Suggested responses and key learning points

Issues around consent and confidentiality.

Breadth of role in supporting people with dementia following post diagnosis.

Before moving on it will be important to reiterate to the group the importance of family involvement in supporting the person to live well with dementia. At this point you should also inform participants that approaches to supporting the person and their families to discuss difficult issues and conflicting perspectives will be considered later in this session.

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Personal outcomes–focused approaches to supporting people with dementia following a diagnosisPeople may only begin to take in the diagnosis in the time immediately following delivery, and this is when they may feel an overwhelming sense of loss and hopelessness. They may experience considerable difficulty in coming to terms with this major life change, but central to early diagnosis is the idea that an opportunity exists to enable and support people to maintain their independence and ensure that they have the best quality of life possible.

Participants will be familiar with Ian’s story from module 4 of the learning resource and will have considered how they would approach a personal outcome conversation with him during their first meeting with him following his diagnosis. Ask participants to refamiliarise themselves with Ian’s story which you can provide as a handout. You can find this on the Community of Practice.

Ian’s story

Ian is 74 years old and a retired electrician. He has rarely had any contact with health services, apart from visits to his GP for minor ailments. He has lived in the same house since marrying his wife Kathy some 52 years ago. Kathy died five years ago but he lives in a very supportive neighbourhood with many friends who moved in around the same time. He is also a keen hill-walker, although he has not managed to get out for a walk for some time. He visits his sister, who lives in a nearby town, every fortnight. Although he lives alone, he has two sons, one who lives at the other end of the country and one about 10 miles away.

Ian has been having memory problems for about two years and received a diagnosis of dementia three weeks ago. This came as a shock to him and he is feeling hopeless and devastated. He is avoiding contact with neighbours and has not left the house since receiving his diagnosis. Ian is being visited today by John who was present at the memory clinic when Ian received this diagnosis and arranged this follow up visit.

Learning activity – day 1

Personal outcomes-focused approaches

Show participants Scenario 3 on the DVD:

Module 4 / Living well with dementia / Drama resource / Scenario 3 / First conversation with Ian (03:55)

In their groups participants should consider the following questions:

Should John have attempted to find out more about what personal outcomes are

important to Ian?

Where would you take the conversation from here?

Ask each group to feedback key points before opening up to wider discussion.

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Notes for Facilitators – day 1

Personal outcomes-focused approaches

Suggested responses and key learning points

Should John have attempted to find out more about what personal outcomes are important to Ian?

Ian is not ready to consider personal outcomes and it would not be appropriate to begin with any discussion about aspirations or what matters to him for the future.

In your first meeting, you will support him to express his feelings and actively listen to identify his depth of feelings, fears and anxieties. At this stage, it is about acknowledging and validating his experiences and using opportunities to reflect back what he has expressed during the session to show that you are listening to his story. This will give Ian the opportunity to vent his feelings and clarify his thinking and will encourage the development of a positive therapeutic relationship with you. The range of techniques to enable Ian to express his feelings and the priorities for this first meeting are detailed in pages 68 and 69 of the enhanced practice resource. Take some time to revisit these and allow the group to share their own experience of using these skills.

Where would you take the conversation from here?

Start by examining the conversation so far. John shows concern from the outset as Ian looks flat and disengaged. Throughout John displays active listening skills in attending fully to Ian.

When Ian states “that there’s no point. I’m finished, I’m no good any more” this is clearly a very negative self assessment. John does not wish to reflect it back in its full negative format so in this situation it can be worth trying to tentatively ‘tone down’ the negativity. Hence reframing the definitive “I’m no good anymore” into “You feel you’re no good anymore” where a fact now becomes a feeling.

Ian accepts the reframed statement, if he had refused it and insisted that he really was no good anymore John would not have argued as this would only entrench the position.

When John then asks Ian “what do you mean when you say “I’m no good anymore” he is moving the conversation from being vague and nebulous to concrete and specific.

When Ian states that “I’ll be dead within the year” it can be tempting to reassure Ian that his thinking is too catastrophic and that such an outcome is unlikely. However it is more important to assume that there is an internal logic to this belief and to try to understand it.

John’s response “It sounds like it was really hard to see your gran with Alzheimer’s. It’s an illness that can affect people in different ways” is well established, straightforward empathy and is the single most effective feature of any conversation based intervention. Other examples of this might be “…I can see you are upset by …” or John goes on to say “But there’s nothing to suggest that you’ll experience it in the same way as your gran”. This challenges Ian’s perception and begins to introduce hope.

In taking this conversation forward you would continue to instil hope by showing you care and being empathetic. Practitioners need to believe that they do not have to rush in and fix situations or have all the answers. An effective intervention is witnessing despair and being

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able to use therapeutic silence. All the person will want is for someone to listen to their story, help them to make sense of their feelings and offer hope and encouragement.

Given Ian’s response to his diagnosis he is potentially at risk of considering suicide. This would trigger a suicide risk intervention such as ASIST (Applied Suicide Intervention Skills Training. For further information visit the website at http://www.chooselife.net/Training/asist.aspx). It is essential that the practitioner asks directly – “Are you thinking of killing yourself?” and based on the response take appropriate action.

Developing a collaborative relationshipIn order to build a collaborative relationship it is important to organise further early visits with a person who is devastated by their diagnosis. This is further detailed on pages 68-69 of the enhanced practice resource. Participants should familiarise themselves with this and the concept of resilience outlined on page 45 of the resource before undertaking the following learning activity.

Learning activity – day 1

Developing a collaborative relationship

As we learned earlier Ian is 74 years old and a retired electrician. He received a diagnosis of dementia just over six weeks ago. When John first visited, Ian was feeling hopeless and devastated.

John has continued to meet with Ian on a weekly basis and the previous three meetings have allowed a collaborative relationship to develop between John and Ian. The focus now is on what Ian wants as he looks to the future. What are his ‘personal outcomes’, what are his strengths and best hopes?

Show participants the three clips within scenario 4 on the DVD:

Module 4 / Living well with dementia / Drama resource / Scenario 4 /Ian’s perspective (01:35)

Module 4 / Living well with dementia / Drama resource / Scenario 4 / Fourth conversation with Ian (04:24)

Module 4 / Living well with dementia / Drama resource / Scenario 4 / John’s perspective (01:37)

In their groups participants should consider:

What personal outcomes has Ian identified?

John’s strategy and approach to the conversation.

Ask each group to feedback key points before opening up to wider discussion.

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Notes for Facilitators – day 1

Developing a collaborative relationship

Suggested responses and key learning points

What personal outcomes has Ian identified?

Ian appears to express personal outcomes relating to feeling happy and sociable as well as being a valued part of his community.

We need to be aware that the person will tell us the problem they are trying to solve at a very early stage, but we won’t hear it because we will be so busy with our own hypotheses and paperwork and it may be many sessions later when we finally recognise the person’s wishes. In this case it is apparent when Ian states: “I am missing Lizzie and I am missing my friends” and “I miss the neighbourhood watch”.

John’s strategy and approach to the conversation

As with the earlier conversation with Ian, John summarises and paraphrases to check his understanding fits with Ian’s viewpoint. He is essentially using solution focused strategies and is looking to elicit behavioural detail about what Ian is doing that is already working (even if imperfectly) such as getting out to socialise and stay connected to community resources.

When John states “So you’re doing fewer things and it’s not as good, but in among all that you’re still managing to get out and go to the pub and meet people and go to the bookies”, he is noting the exceptions in Ian’s situation. It is important to remember that every problem has ‘exceptions’, i.e. moments when the problem is not happening or when even though it is happening the person is coping better with it. It is easy to overlook or not give due attention to exceptions. They are however evidence of problem solving skills and are the foundation on which solutions will be constructed. In many respects it is impressive that Ian is still getting out at all.

John pushes for specific detail about how Ian makes things happen and makes sure to underline the attribution that it is Ian that is causing it to happen. While Ian minimises the significance of those instances when he gets organised and goes out, John continues to flag up the fact that the skills used in getting organised to go to the pub or bookies and put on a bet are transferrable and relevant to other areas.

Given that people tend to give weight to the professional’s opinion, it can be quite startling to hear that the professional is impressed with how you are currently handling a problem or difficulty and can enable the person to place value on what they are able to do rather than focus on deficits.

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Learning session preparation – day 2

Personal support plan

At this point you should inform participants that after attendance at day 1 learning session, they are required to complete the following learning activity before returning for day 2:

Ask participants to revisit the principles to guide development of a personal support plan in module 4 on page 57 of the enhanced practice resource. To examine how these principles are being implemented in their own practice area, participants should carry out an audit on a sample of personal support plans and feedback the extent to which these criteria are being met.

Understanding adjustmentTo introduce the notion of adjustment you should refer the group to social and emotional response following a diagnosis in module 4 page 43 of the enhanced practice resource.

You should highlight the importance of recognising that being able to continue with previous occupation and interests or developing new ones as well as maintaining social supports and community connections are essential for the person to feel valued and adjust to living well with dementia.

To enable participants to view this from the perspective of a family member you should show the interview with Ann where she tells us about the changes she noticed in her husband Andrew as he regained connections and was able to give back to the community as well as developing an interest in art:

Module 4 / Living well with dementia / Interview resource / Understanding adjustment (05:15)

Participants will apply the learning from this clip to the following section on risk enablement.

Risk enablementLife is never risk-free. Risk is part of all our lives, but assumptions about the diminished capacity of people with dementia to make decisions about risk can result in their quality of life being restricted.

Some issues may arise because of conflict between the outcomes that the person with dementia wants and those that family and carers want. Differences in views often focus on what the person with dementia is able to continue to do and the risks involved.

The family will need support to enable the person to take risks, as they will naturally tend to want to protect the person without realising the impact of restrictions on his or her quality of life. Families will often look to health and social services professionals to support them to engage the person in conversations about reducing risk particularly if they expect the person with dementia to object to their proposed measures. It can be challenging for professionals to initiate what can be seen as difficult conversations where the outcome is unpredictable and there are heightened and intense emotions. It is understandable that as professionals we are anxious about starting conversations we feel may have a negative impact on the person.

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Participants will be familiar with Ian’s story from module 4 of the learning resource. Ask participants to refamiliarise themselves with Ian’s story which you can provide as a handout. You can find this on the Community of Practice.

Ian’s story

Ian, whom we have met on two earlier occasions, is someone who has many interests and was socially active before receiving his diagnosis. He was a keen hill-walker, although he had not been on a hill for a couple of years. More recently, he enjoyed going to his local pub and occasionally placed a bet on the horses. He travelled by bus to visit his sister in a nearby town every fortnight and was actively engaged in his local Neighbourhood Watch group. Following his diagnosis with dementia, Ian’s sons suggest that one of them take him to visit his sister once a month, rather than Ian travelling by bus.

Ian has been going to the pub and placing bets every day. His son has contacted John because he is concerned that Ian is spending all his money and he wants John to facilitate a conversation with him about granting power of attorney.

Learning activity – day 1

Risk enablement

In their groups participants should discuss:

How they would work with Ian and his son to support outcomes that are acceptable

to both of them.

Revisit the Tips for planning and engaging in conversation in Module 4 page 53 of

the enhanced practice resource to assist with this process (this will be available as a

handout on the Community of Practice).

Ask each group to feedback key points before opening up to wider discussion.

Notes for Facilitators – day 1

Risk enablement

Suggested response and key learning points

It may be best for the practitioner to organise to meet with Ian alone to establish his feelings, fears and concerns. This will require sensitivity to ensure that Ian does not feel excluded or that decisions are being made about him.

Similarly, the practitioner should organise one-to-one meetings with Ian as he or she may also have concerns that would not be shared if the family member was present. It is crucial, however, to also work with the family as a whole to support them in finding ways of discussing difficult issues openly together.

Group members may feel that it is part of their role to act as mediator or facilitator so that all parties have a voice and are heard by others involved. It is important to remind them that if

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they do not feel confident in undertaking this role, they should encourage the family to agree to a referral to specialist psychological therapy services.

Learning session preparation – day 2

Risk enablement

At this point you should inform participants that after attendance at day 1 learning session they should access a clip on the DVD where we hear from Ann on how she had to actively change her perspective on risk to enable her husband Andrew to remain independent while also taking risks:

Module 4 / Living well with dementia / Interview resource / Risk Enablement (07:15)

MediationAs we learned earlier in this module, people with dementia and their families often have differing views from each other on the best course of action. It is often the practitioner’s role to manage these differing viewpoints.

Learning session preparation – day 2

Mediation session

At this point you should inform participants that after attendance at day 1 learning session they should access a clip on the DVD which provides a good practice example of a mediation session with Ian and his son Andrew:

Module 4 / Living well with dementia / Drama resources / Scenario 5 / Mediation session with Ian and Andrew (09:22)

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Closing the learning sessionIt is important to end day 1 learning session in a way that ensures all participants leave motivated to implement change. Time will need to be allowed to support the integration of learning experiences, reflection on experiences and insights, and evaluation of the learning session. Participants will also need to leave with clarity about the purpose of Day 2 learning session and preparation requirements.

Reflection and integration

This will involve asking the group to reflect on their experience, returning to expectations gathered earlier. Suggested approaches to undertaking reflection and integration activities will be available on the Community of Practice.

Evaluation

It is essential to gather information which will enable you to assess both the effectiveness of your teaching and the learning achieved. This will help you identify your successes and areas for development as well as providing evidence to inform future learning sessions.

Obtaining immediate feedback on the learning session will be particularly beneficial if it is combined with the reflection and integration rather than being the final activity of the session. This helps to maintain energy and focus on learning before participants leave. A range of evaluation models and tools will be available on the Community of Practice to assist with this process.

Day 2 learning sessionThe focus and content of Day 2 learning session should be flexible to maintain a participant centred approach and respond to individual and group needs. As well as discussing the actions and learning activities undertaken in the interim, day 2 learning session will be informed by the evaluation, reflection and integration activities described earlier in this section.

Day 2 preparation requirements

Take a few minutes to remind participants that there are a number of actions and learning activities they need to complete before returning for Day 2 learning session. A summary of these are detailed in Appendix 2. Recap on actions and learning activities to check that participants are clear about requirements before closing the session. Learning activities and handouts are available on the Community of Practice. Indicate that you are available for clarification on any aspect of the above.

We would suggest that you close your learning session with a clip from the DVD resource which reinforces a key aspect of Promoting Excellence which is living well with dementia:

Module 4 / Living well with dementia / Interview resource / Living well with dementia / Archie (07:13 – 09:33)

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Appendix 1

How the DVD resource is used across the learning sessionsPage Number DVD reference Running time

Page 5: Module 2 / Before diagnosis / Interview resource / Noticing early changes and approaching services

(16:10)

Page 6: Module 4 / Living well with dementia / Interview resource / Living well with dementia / Henry and Ann

(00:00 – 03:28)

Page 9: Module 2 / Before diagnosis / Interview resource / Noticing early changes and approaching services

(16:10)

Page 10: Module 2 / Before diagnosis / Drama resource / Scenario 1A / First conversation with Peter

(02:45)

Page 13: Module 2 / Before diagnosis / Drama resource / Scenario 1B / First conversation with Peter

(03:57)

Page 16: Module 3 / Receiving a diagnosis / Interview resource / Receiving a diagnosis

(14:52)

Page 17: Module 3 / Receiving a diagnosis / Drama resource / Scenario 2 / Communicating a diagnosis

(06:41)

Page 18: Module 4 / Living well with dementia / Interview resource / Impact of diagnosis on family and relationships

(02:30)

Page 19: Module 4 / Living well with dementia / Interview resource / Improving experiences for families and carers

(06:13)

Page 20: Module 4 / Living well with dementia / Drama resource / Scenario 3 / First conversation with Ian

(03:55)

Page 22: Module 4 / Living well with dementia / Drama resource / Scenario 4 /Ian’s perspective

(01:35)

Module 4 / Living well with dementia / Drama resource / Scenario 4 / Fourth conversation with Ian

(04:24)

Module 4 / Living well with dementia / Drama resource / Scenario 4 / John’s perspective

(01:37)

Page 24: Module 4 / Living well with dementia / Interview resource / Understanding adjustment

(05:15)

Page 26: Module 4 / Living well with dementia / Interview resource / Risk enablement

(07:15)

Page 26: Module 4 / Living well with dementia / Drama resources / Scenario 5 / Mediation session with Ian and Andrew

(09:22)

Page 27: Module 4 / Living well with dementia / Interview resource / Living well with dementia / Archie

(07:13 – 09:33)

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Appendix 2

Learning activity preparation – day 2These are the activities which you have asked participants to undertake before returning for day 2 of the learning.

Page 13 / Module 2 / Before diagnosis / First conversation with Peter

Learning activity – preparation for day 2

First conversation with Peter

Watch the video clip:

Module 2 / Before diagnosis / Drama resource / Scenario 1B / First conversation with Peter (03:57). Consider the following questions:

What is different about this approach?

What skills can you identify?

What can we understand from Peter’s response?

Participants should provide feedback during day 2.

Notes for Facilitators – preparation for day 2

First conversation with Peter

What is different about this approach?

Mindset – full attention – focus totally on the person - open self aware. Leave behind own interests, opinions, needs and wants and focus completely on the person.

Exercises to practice

Positive perspective about dementia

What skills can you identify?

John’s introduction to Peter is a much better start than “I am in a bit of a rush today”.

Establishing at the outset a clear time boundary is simple yet always helpful. It minimises stress on both John and Ian, ensuring that John’s other appointments and commitments don’t go awry. It also allows Peter the opportunity to agree with that time frame or not and models transparency and clarity.

Open question expressing interest.

Use of silence while Peter gathers his thoughts.

Often people want to attribute the problem to some other person, in this case his wife. The golden rule: argumentation breeds argumentation. At all times John will seek to roll with

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resistance and take Peter’s assertions at face value and seek to understand Peter’s logic and reasoning.

Invitation for Peter to see the situation from his wife’s perspective. Change frequently starts with a simple shift in perspective.

Think daft things…classic minimising as a coping mechanism for fear. There is no need at this stage to directly confront this denial. Through empathic listening and Socratic questions we can help Peter to begin to come to terms with his situation incrementally.

Soctratic questioning involves asking strategic questions phrased in a way that stimulates thoughts and increases awareness of beliefs and behaviours that are causing the person psychological distress. It serves the main purpose of moving from the vague and woolly to the concrete and specific which is a primary goal of any structured conversation.

Explicit shift in perspective again. John sticks with question of thoughts rather than feelings based on a professional opinion that Peter will be more responsive to questions about thoughts than feelings. Some people however are comfortable with the “what’s your feelings about what’s been happening” question.

This is really quite challenging but it is not confrontational or argumentative. It names the fact that it is not just Peter’s wife who has expressed concerns.

A key point to be aware of is that people will often laugh at the point in the conversation where they feel the greatest fear or discomfort. There is an unspoken invitation to the listener to join in the laughter. It is helpful to know that this laughter is a mask and it is important not to join in with it (collusion).

John acknowledges that there are other possible explanations but nonetheless is not backward about the D word.

Not responding to this, is a response. As the old saying tells us, ‘no answer is an answer.’

Summary and an invitation to action.

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Page 17 / Module 3 / Receiving a diagnosis / Communicating a diagnosis of dementia

Learning activity – preparation for day 2

Communicating a diagnosis

Watch the video clip:

Module 3 / Receiving a diagnosis / Drama resource / Scenario 2 / Communicating a diagnosis (06:42)

To what extent were the 5 key steps detailed in pages 35-39 of the enhanced

practice resource followed by Lisa when communicating the diagnosis?

Participants should provide feedback during day 2.

Notes for Facilitators – preparation for day 2

5 key steps

You will find relevant information about the 5 key steps on pages 35-39 of the enhanced practice resource.

Page 24 / Module 4 / Living well with dementia / Personal support plans

Learning activity – preparation for day 2

Personal support plan

Complete the following learning activity before returning for day 2:

Revisit the principles to guide development of a personal support plan in module 4 on

page 57 of the enhanced practice resource.

Carry out an audit on a sample of personal support plans and feedback the extent to

which these principles are being met.

Notes for Facilitators –preparation for day 2

Personal support plans

You will find relevant information about personal support planning on page 57 of the enhanced practice resource.

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Page 26 / Module 4 / Living well with dementia / Risk enablement

Learning activity – preparation for day 2

Risk enablement

Watch the video clip:

Module 4 / Living well with dementia / Interview resource / Risk enablement (07:15)

Reflect on Ann’s experience. This will support you in working with families and carers

where there are differing viewpoints.

Notes for Facilitators –preparation for day 2

Risk enablement

This is a reflective activity for individual participants and does not require any follow-up.

Page 26 / Module 4 / Living well with dementia / Mediation session with Ian and Andrew

Learning activity - preparation for day 2

Mediation session

Access the clip on the DVD which provides a good practice example of a mediation session with Ian and his son Andrew and complete the learning activity below:

Module 4 / Living well with dementia / Drama resources / Scenario 5 / Mediation session with Ian and Andrew (09:22)

Consider the key elements of a mediation session which will be discussed during day 2.

Participants should provide feedback during day 2.

Notes for Facilitators –preparation for day 2

Mediation session

Consider the key elements of conducting a mediation session

What we can see from this mediation session is that John needs to be consciously mindful to remain fair and impartial but also to be taking more control and making it clear that there are rules about conflict.

His preamble sets out the purpose of the session with emphasis on words like ‘ideas’ and ‘agreement’. Naming the time boundaries can help create a sense of purpose and the possibility of more meetings helps us see this as a process and not necessarily a singular event.

At the point where it is clear who is going to start it is worth reminding the parties that it will be an equitable process with each assured they will get their say.

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Early on we notice that Ian is angered by Andrew’s comment - at any mediation session conflict is almost certain to break out. When it does, the mediator must quickly establish authority. John then summarises and paraphrases Andrew’s concerns lending them some legitimacy, a process that should be repeated for Ian’s concerns. This means the pressure to be accurately listening to the concerns and underlying rationale for them is paramount.

Ian states “I think he’s worried about nothing. I always went to the pub – and you know that! What’s changed for the worse is that since they told me I had Alzheimer’s I don’t see much of my sister, I don’t see my neighbours and friends, I don’t get out on the hills. The guys at the pub keep me sane…seriously! It’s the place where I can be my old self, where I can have a laugh and a wee drink. You forget your troubles too…at least until morning! Aye, I do put a line on most days, but I win more than I lose! A wee punt on the horses gives me something to look forward to – you know, get home, see how the race went on the telly”. We are getting to hear the realities of Ian’s situation as he sees it. Given that it is pointless to argue with a perception John simply listens empathically and summarises the concerns in neutral language.

Andrew’s response to this is like many people in that he is more willing to ‘hear’ his father in mediation than he might if they just spoke to each other alone. He also manages to get his points across in a very articulate manner.

It can be useful to remember that family members have very different boundaries where all kinds of insults and harsh language happily coexist with affection and mutual regard. As the session progresses there are further angry exchanges between father and son. As we all know only too well in many families strong emotions can lie close to the surface. The triggers for such outbursts can be some apparently inoffensive comment or remark.

John then seeks to take some of the emotion out of the situation by again pushing towards the concrete, specific and quantifiable “What I’m hearing Ian, is genuine concern for your wellbeing. But can I just ask a factual question?”.

Again John seeks specifics, “When you say ‘a wee bit more’ Ian, how much are we looking at?” This deliberate avoidance of a confrontational tone allows Ian to become more relaxed and reflective.

However Ian’s response taps into Andrews’s deepest fears. He can visualise his father being financially cleaned out in the near future. Feeling out of control he is now focusing on Power of Attorney.

John responds to Andrew’s emotion in a calm and rational adult to adult manner.

Andrew has managed to press Ian’s buttons! This is again typical in families where individuals have learned how to get maximum reaction with minimum effort.

John’s response ‘What is it you wish X would say (or do)’ is an absolutely tried and tested question which tends to help bypass the status quo and move forward to preferred outcomes rather than endlessly describe areas of disagreement.

As is fairly typical what we hear is that what Ian really wants would not require a miracle. His wish list is fairly modest and probably achievable at least in part.

What I wish…tells us that Ian is getting into the territory of hopes, dreams and personal outcomes or in other words the things that really matter to him.

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Andrew’s response is again emotional as his concerns are genuine. There is the question of who would be blamed if something happened to Ian. This concern is shared by the practitioner too.

Discussions become calmer possibly because Ian can see that as his real aspirations are being aired he is able to acknowledge the downside of his current drinking behaviour. Equally, as Andrew can hear his concerns being treated seriously he is able to begin to negotiate possibilities.

John’s states “Okay, so we’re agreed that going to the pub is still on the agenda, and that going to the bookies is also still an option, but maybe not after having had a drink? Does anyone have any suggestions as to how these things could still continue, but perhaps in some financially safer manner? How would it work Ian, would someone give you the money before you went out, or would you limit it yourself maybe?” John simply wants to summarise the options here and see if they are met with resistance or acceptance. He is also avoiding taking on the expert role and offering the solutions. Once in the expert role it is very difficult to get back out of it, and of course any suggestions that are not self generated are very likely to fail.

Andrew’s suggestions “if you only go to the bookies before a drink and limit yourself to the same sort of bets you used to do” are reasonable and leave Ian room to manoeuvre.

There are no guarantees that the rest of the session will go smoothly but the plan remains to listen respectfully to the concerns, roll with resistance, seek common ground and work towards options and possibilities.

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