Psychosocial theory of aging with life long intellectual disability, Thesis of Social Psychology

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Master of Science by Research

Eileen Dukes

Towards a Psychosocial Theory of Ageing

with Lifelong Intellectual Disability

University of Limerick

Declaration

I declare that this submission is entirely my own work and has not been

submitted in part or full to any other university for the award of degree.

____________________________________________________________

Abstract

Background: In the context of ageing populations in the western world, people with lifelong disability are among the fastest growing groups of older people. The largest sub-group of these are older people with intellectual disability. Yet little is known about how men and women with lifelong intellectual disability experience their later years. The purpose of the study is to develop a better apprehension of what ageing implies for those with lifelong intellectual disability, through direct consultation about psychosocial aspects of their lives.

Method : This is a cross-sectional study carried out in a community based service for adults with moderate to severe intellectual disability in South West Ireland. It utilised a qualitative approach with a non-experimental, exploratory design. Participants (n=46) ranged in age from 36 to 76, with a mean age of 52. There were 24 males and 22 females. Participants lived in community residential houses (54%), with family (39%), in supported living (4%) and in a community hospital (2%). Fifty five interviews were undertaken. Data analysis drew on the principles of the Constructivist Grounded Theory Method.

Results: The findings point to a life course theory of ageing and show that outcomes in ageing with lifelong intellectual disability are a function of both the ageing process and how age-related changes interface with the lived environment. Ageing well is linked to the quality and timing of supports received across five areas (1) self-determination (2)safety and security (3) social participation (4) loss and spirituality (5)coping patterns. A planning tool is developed from the findings and is used to identify individualised supports required across these five areas ( Wellness in Ageing Tool – Intellectual Disability – WiAT-ID).

Conclusions : (1) ageing experience cannot be set apart from whole of life experience (2) a five area support model, grounded in the experiential reality of actual lives, facilitates psychological and social wellness as men and women with lifelong intellectual disability grow old.

Table of Contents

CHAPTER Two : Understanding Ageing with Intellectual Disability –

CHAPTER Five: Consulting with Research Participants with Intellectual

CHAPTER Eight: Development of a Psychosocial Theory of Ageing

• Declaration page
• Abstract
• Acknowledgements
• Table of Contents
  • List of Tables
• List of Diagrams
• Glossary
• References
• Bibliography
• Resources
• List of Appendices
  • 1.1 Background CHAPTER One: Introduction to the Thesis page
  • 1.2 Aim of the Study
  • 1.3 Literature Search
• 1.4 Outline of the Thesis
• 2.1 Overview the Need for Theory
• 2.2 Gerontology – The Story So Far
• 2.3 Understanding Intellectual Disability
• 2.4 Demographics
• 2.5 The Need for Theory - Disability 2.6 Towards a Psychosocial Theory of Ageing with Lifelong Intellectual
• 2.7 Psychosocial Theories of Ageing Outlined
• 2.8 Goodness of Fit
• 2.9 Going Forward
• 2.10 In Conclusion
• 3.1 Overview CHAPTER Three : Life Course
• 3.2 Life Course and Ageing
• 3.3 Life Course Issues and Impact on Ageing with Intellectual Disability
• 3.4 Social Exclusion
• 3.5 Self Determination
• 3.6 The Role of the Family
• 3.7 Transitional Shifts
• 3.8 Work and Retirement
• 3.9 Loss and Bereavement
• 3.10 Health
• 3.11 In Conclusion
• 4.1 Overview CHAPTER Four : Successful Ageing – a More Inclusive Approach
• 4.2 Successful Ageing
• 4.3 Subjective Opinion on Ageing Well
• 4.4 Supporting Successful Ageing for All
• 4.5 Contextual Issues Across the Lifespan
• 4.6 Bridging the Fields of Ageing and Disability
• 4.7 In Conclusion
• 5.1 Overview Disability and Communication Difficulties
• 5.2 Background
• 5.3The Right to be Included and Consulted
• 5.4 Why Consult?
• 5.5 Respect
• 5.6 Establishing Individualised Communication
• 5.7 Data Collection Methods
• 5.8 In Conclusion
• 6.1 Overview CHAPTER Six: The Research Methodology
• 6.2 Context of the Study
• 6.3 Choice of Methodology
• 6.4 Rationale for the Study
• 6.5 Defining Old Age in the Study Population
• 6.6 Ethical Approval
• 6.7 Participants
• 6.8 Ethical Considerations
• 6.9 Informed Consent
• 6.10 Eliciting Informed Consent
• 6.11 Creating an Effective Communication Environment
• 6.12 Data Collection and Management
• 6.13 Data Analysis
• 6.14 Reporting Results
• 6.15 Enhancing Credibility and Ensuring Validity of the Research Study
• 6.16 Summary of Study Design
• 6.17 Going Forward
• 6.18 In Conclusion
• 7.1 Overview CHAPTER Seven: Presentation of Findings
• 7.2 Self Determination
  • 7.2.1 Choice
  • 7.2.2 Acceptance
  • 7.2.3 Dependency
  • 7.2.4 Disempowerment
  • 7.2.5 Self determination: summary of analysis
• 7.3 Loss and Spirituality - 7.3.1 Pervasive loss - 7.3.2 Spiritual life - 7.3.3 Death and dying - 7.3.4 Loss and spirituality: summary of analysis
• 7.4 Social Participation - 7.4.1 Social engagement - 7.4.2 Relationships - 7.4.3 Social roles - 7.4.4 Self concept - 7.4.5 Community - 7.4.6 Social participation: summary of analysis
• 7.5 Safety and Security - 7.5.1 Confidence - 7.5.2 Adaptation - 7.5.3 Stress - 7.5.4 Safety and security: summary of analysis
• 7.6 Coping Patterns - 7.6.1 Positive coping response - 7.6.2 Minimising health-related decline - 7.6.3 Focus on the present - 7.6.4 Achievable goals - 7.6.5 Positive outlook - 7.6.6 Coping patterns: summary of analysis
  • 7.7 In Conclusion
• 8.1 Overview with Lifelong Intellectual Disability
• 8.2 Kate’s Story
• 8.3 The Life Course Trajectory
• 8.4 Key Findings Informing Theory Development
• 8.5 A Theory of Ageing with Lifelong Intellectual Disability

8.6 Using the Theory 174 8.7 In Conclusion 175

CHAPTER Nine: Successful Ageing Revisited

9.1 Overview 177 9.2 Supporting Competencies in Advancing Years 177 9.3 Supporting Competencies in Ageing – Qualitative Checklist (SCIA-20) 179 9.4 In Conclusion 181

CHAPTER Ten: Discussion

10.1 Overview 182 10.2 Differences in Ageing Experience Relative to the General Population 182 10.3 Seeking Common Ground- an Inclusive Agenda in Research, Policy and Practice 185 10.4 Where does the Research Fit with The Wider Research on Intellectual Disability and Ageing? 187 10.5 Where does the Theory Fit with General Ageing Theory? 188 10.6 What does the New Theory Add to Ageing Theory? 191 10.7 How do Findings Fit with Current Intellectual Disability Practice and Policy? 192 10.7.1 Person centred planning 192 10.7.2 Generic integration 193 10.7.3 Rights and citizenship 194 10.7.4 Housing 196 10.7.5 Personal safety 197

10.8 Implications for Future Research 198 10.9 Contribution of the Study to the Field of Ageing and Intellectual Disability 202 10.10 In Conclusion 204

List of Diagrams:

Diagram 1 Participant Age Profile – Overall (pg.72) Diagram 2 Participant Age Profile – Down Syndrome/Other (pg.72) Diagram 3 Living Arrangements of Participants (pg.73) Diagram 4 The Psychosocial World of the Older Person with Lifelong Intellectual Disability (pg.98) Diagram 5 Self Determination (pg.99) Diagram 6 Loss and Spirituality (pg.116) Diagram 7 Social Participation(pg.125) Diagram 8 Safety and Security (pg.143) Diagram 9 Coping Patterns(pg.153)

Diagram 10 Lifespan Trajectory of Development (pg.168) Diagram 11 Five Area Support Model of Ageing Well with Lifelong Intellectual Disability (pg.172) Diagram 12 Differences in Ageing Experience Relative to General Ageing Population (pg. 183) Diagram 13 How Psychosocial Change is Experienced in Older Years(pg.205)

Glossary

Biopsychosocial: A term used to imply that biological, psychological, and social factors and

their complex interactions all have a role in human functioning and in our understanding of

health and illness (Engel 1977).

Gerontology: The scientific study of ageing as a physical, psychological, cultural and social

process. Pioneers such as James E. Birren began organising gerontology as a separate field in

the 1940’s.

Key worker: People with intellectual disability attending services in Ireland can have a Key

Worker to co-ordinate their care. The Key worker is responsible for co-ordinating a person-

centred plan for an individual.

Life Story Book: This is a homemade book made to store memories about a person's life in a

variety of ways such as photos, stories, documents, drawings. It might be used as a valuable

resource for present and future carers or for the individual and family. The concept of life

story books originates in social work where it is used in the adoption and fostering services

and dates back to at least the 1960’s.

Person Centred Planning (PCP): Person centred planning is a way of discovering how a

person wants to live their life and what is required to make that possible (National Disability

Authority 200 5 ).The aim of person centred planning is “good planning leading to positive

changes in people’s lives and services” (Ritchie et al 2 003). It has its roots in the

normalization movement (Wolfensberger 1972 ) and is grounded in a social model of

disability and a strengths-based approach.

Chapter One – Introduction

1.1 Background to the study

While Hendricks and Achenbaum (1999) point out that earliest historical records indicate that populations throughout all times and places have tried to make sense of the way people age, the current growth in ageing populations across the globe has led to increased research interest in the area of ageing, and in particular, the idea of ageing successfully.

Prior to the 1990’s ageing was viewed as an inevitable process of deteriorating health and function. In 1997 Rowe and Kahn redefined ageing by advancing the concept of successful ageing which entailed low risk of disease, good physical and cognitive function, and productive engagement in life. While their theoretical approach to ageing had a significant effect on how general ageing was subsequently viewed, men and women with intellectual disability were omitted from the analysis as they could not meet the criteria set out by the authors.

Growing old with a lifelong intellectual disability is now a common phenomenon in Ireland, as in the western world as a whole (World Health Organization 2001a). As such we are seeing the first substantial group of older adults with lifelong intellectual disability reach old age (Bigby 2004). Many are surviving to their mid-sixties, with some living well beyond this age (Buys et al 2008). It is time then to expand the discussion on experience of ageing beyond the typical population and to explore how those ageing with lifelong intellectual disability experience later life.

This is the context of the study presented in the following thesis and the researcher seeks to bring new voices to the research arena in order to begin a narrative and stimulate debate on experience of ageing in this minority group.

1.2 Aim of the study

The study aims to broaden understanding of ageing with intellectual disability through direct consultation with the research population around individual change in psychosocial aspects of functioning. Much of the research in the disability field has traditionally drawn from the perspectives of others, rather than including those of the people themselves (Buys et al 2008).

Morris (1999) describes attempts to construct a theory using the methods and perceptions of those without disability as ‘the original error’ of the investigation. Bogdashina (2003) suggests that to avoid ‘the original error’ personal accounts and communications of the target population should be regarded as the main source of information. The approach adopted in this study is to listen to those who are ageing with lifelong intellectual disability, to afford them an opportunity to explain how they experience the world, and challenged the assumptions that only the views of specialists and carers are relevant and correct. By adopting a consultative approach using individual interviews the study will provide first-hand insight into how this group experiences older age, as opposed to how others think they do. More specifically, the purpose of the study is to explore the psychosocial aspects of ageing with lifelong intellectual disability, and to be guided by the need to understand the values and purposes of those at the centre of the enquiry. The central research question is therefore: How do men and women with lifelong intellectual disability experience ageing? In particular:

a. How is the ageing process described and explained? b. How is the subjective experience of change due to ageing described and explained? c. How are the effects of change due to ageing described and explained?

Psychosocial theories of ageing explain human development and ageing in terms of individual changes in cognitive functioning, behaviour, roles, relationships, coping ability, and social changes (Wadensten 2006). The research questions are therefore addressed in relation to these specific areas of life experience and individual functioning. The study site : a community based service for adults with intellectual, physical, and sensory disabilities, in the South West of Ireland. The researcher : a clinical psychologist working at the study site. 1.3 Literature Search Electronic and print resources were screened in order to identify literature for inclusion in the study. The search strategy for reviewing the literature was mainly an electronic search of databases held in the University of Limerick Glucksman Library and search of print resources in the Social Sciences/Health Sciences sections of the library. Key academic and clinical text

Chapter Three examines the literature on life course to evince an explanation of how dynamic factors throughout life impact on the ageing experience for people with intellectual disability. It is argued that psychosocial theories developed around normative ageing may not provide adequate explanations of their experience.

Chapter Four focuses on the literature of ‘successful ageing’. It examines how this phenomenon is understood and portrayed and whether it should be redefined in order to include people with lifelong intellectual disability.

Chapter Five lays the foundation for the methodology of the study by examining the core challenges in consulting with research participants with intellectual disability and associated communication difficulties. Evidence-based solutions and best practice guidelines are also outlined.

The methodology of the study is fully presented in Chapter Six and the rationale for choice of methodology is also provided.

The findings of the study are presented in Chapter Seven. The aim of this chapter is to provide insight into the ageing experience of participants. It therefore begins with a visual portrayal of their psychosocial world developed from thematic analysis of the collected data. Themes and subthemes are drawn out across five broad areas in order to illustrate the psychosocial experiences of participants as they age.

Chapter Eight presents the key findings contributing to theory development. A model of the new theory is demonstrated and the postulates of the theory are outlined. The chapter concludes by examining practical applications of the theory.

Chapter Nine revisits the idea of ‘successful ageing’ in order to explore how the findings can be used to optimise quality of life for the study population. A means of supporting ageing through timely planning and individualised supports is also set out.

Chapter Ten provides a discussion on the study in its entirety and positions it in relation to the wider research in the area, and in relation to practice and policy in the fields of both intellectual disability and ageing. The ways in which the new theory adds to ageing theories generally is explored and the contribution of the study to the field of ageing and intellectual disability is considered.

Guidelines for practice developed from the findings are presented in Chapter Eleven.

Chapter Twelve presents a short reflection on key issues that resonated for the researcher at the final stages of writing the thesis.