Table of Contents
1 Introduction and Overview 7
The purpose of this book 7
Terminology 9
Facts and figures 10
Relevant UK legislation and policy 11
Context of the work 12
The focus of different practitioners 13
Routine as safety 14
Is talking therapy the appropriate treatment? 15
Problems that may be faced 15
Associated losses 17
Physical sensations 20
Psychic or spirit sensations 20
Collective grief 20
Witnessing other people's illness 21
Conclusion 22
2 How Bereavement and Loss can be Different in Learning Disabilities 23
Introduction 23
Why the experience of bereavement might be different for someone with a learning disability 23
Self-blame 35
Not knowing when grieving 'stops' following bereavement 36
3 Stages of Loss 37
Introduction 37
Shock 37
Denial 38
Bargaining 38
Searching 39
Anxiety 39
Anger 40
Guilt 40
Depression 41
Grief and mourning 42
Acceptance 42
How we can help this process 43
4 Assessment 47
Introduction 47
Background to risk 48
Care plans 49
Managing greater risks posed to the individual 49
Relevance to bereavement and loss 50
Depression 51
Anger 53
Physical manifestations of grief 53
Self-esteem 55
Assessment of behaviours that may be seen as attention seeking 55
Factors to consider when assessing for any therapeutic work 55
History of attachments 58
Factors to consider in grief work 59
Unresolved grief 62
5 Developing Understanding around Bereavement and Loss 65
Context of the work 65
Practical considerations 66
Blocks to understanding 67
Building on previous understanding 69
Autism and understanding of bereavement and loss 70
Developing an understanding of illness 72
Developing an understanding of what death is 73
Breaking news of sudden illness or death in residential settings 73
Reading social cues 75
Different attachments in residential care 75
Difficulty in locating the body 75
Explaining change to people with learning disabilities 76
Health education and awareness 78
Specific illness 79
Impact of a death within a shared supported house 80
Avoiding euphemisms 81
Thinking about funerals and attending funerals 82
Finding it hard to move on from worry 83
Growing older 85
6 Therapeutic Tasks 86
Introduction 86
Types of referrals 86
Establishing a good therapeutic relationship 87
Consent 88
Contract 88
Confidentiality 89
Boundary setting 89
Environment and room setting 90
Goal setting 90
Tasks of counselling 91
Endings 92
7 Working with Families 94
Introduction 94
Life cycle issues 94
Beliefs and customs 96
Loss felt by parents 96
Loss of being parents 96
Issues for older parents 97
Preparing for the future 100
Being honest about health needs 101
Managing the effects of moving home 102
Managing when parents become ill or hospitalized 103
Dealing with structural change 105
8 The Carer's Role in Bereavement 106
Introduction 106
Knowing someone's history 106
Who is a carer? 107
Staff training needs 107
Supporting a client who is facing a bereavement 107
Systemic implications of a loss 109
The role of carers 109
National Service Framework for Mental Health and the Carers Act 110
Caring for someone with learning disabilities 110
Long-term foster placements 111
Supporting people in residential care facing loss and bereavement 112
End of an adult fostering relationship 114
9 Working with Clients who have Additional Communication Needs 115
Language and meaning 115
Identifying non-verbal change 116
Behavioural changes 117
Echolalia 117
Involving speech and language therapy 118
Makaton® 118
Using Makaton to communicate emotions around loss and bereavement 119
Talking Mats® 120
Hearing loss 121
Sight loss 121
Creative therapies 122
Dementia and learning disabilities 123
10 Role of Supervision 126
Introduction 126
Why supervision work in learning disabilities is essential 126
Establishing the contract 127
Functions of supervision 128
Issues that often present in learning disabilities supervision 130
Difficulties in obtaining appropriate supervision around bereavement and loss 132
Encouraging self-reflection 133
Working with trainees 133
Supervising trainee counsellors 135
Supervising residential staff 135
Supervising day care staff 136
'Death and loss' for trainees 136
11 Working with Terminal Illnesses 138
Introduction 138
Why terminal illness is a difficult area 139
Delays in diagnosis 139
Assumptions made by others 140
National Strategy for End of Life Care 2008 140
The concept of death 141
Knowledge of what a terminal illness is 142
Maintaining identity 143
Specific issues for adults with learning disabilities facing end of life illness 144
Explaining a terminal diagnosis 147
Palliative care 148
Health education 148
Supporting people with learning disabilities who have terminally ill relatives and friends 149
12 Remembering and Anniversaries 151
Introduction 151
Functions of remembering 152
Recalling the past 153
Recognizing attachments 153
Problems with remembering 154
When remembering is not helpful 156
Managing unpleasant memories 157
Unwelcome reminding 157
Loss felt by a centre or home 158
Continuity 158
Problems with anniversaries 159
Doubts about memory and relationships 160
Creating a focus 161
Unresolved grief appearing some time after a loss 161
Seasons and festivals 163
Voices, accents, smells and sounds 163
Dementia 164
Managing change 165
When to end mourning and remembering 166
References 168
Useful Organizations and Resources 170
Index 172
