Organisational engagement of individuals with younger-onset dementia : maximising beneficial workplace outcomes

This thesis concerns individuals who develop dementia symptoms before 65 years of age (called younger-onset dementia, or YOD) while employed, which has significant personal, financial and social effects due to the commitments and responsibilities of families and work. This thesis aims to identify employment-related work strategies to allow people with dementia to continue to work. Four linked studies consistent with the study aim were designed and implemented. In Chapter 3, Study 1, a review of employer approaches to employees with dementia, evaluated nine studies related to dementia and work. The main analysis extracted, grouped and classified employer actions towards employees with dementia in these studies. Two in three employer responses to employees with dementia were ineffective in supporting employees. Poor understanding of the difficulties of those living with dementia appeared to be the main cause. Better knowledge among individuals experiencing dementia symptoms and their employers is needed. In Chapter 4, Study 2, a review of guidance materials related to dementia in the workplace sought to identify and review the availability, structure and content of information to support employees or employers dealing with dementia. Guidance information published by dementia organisations in English-speaking countries such as Australia, Canada, New Zealand, Singapore, the United Kingdom (England, Scotland and Ireland) and the United States of America was analysed and compiled. Dementia websites were found to offer relevant, high-quality content, but this can be fragmented and difficult to find. Few organisations covered the range of relevant content. Most information was aimed at employees with dementia symptoms rather than their employers. Information gaps for employees with dementia included the importance of early diagnosis and assistive technology applications. Employer information gaps included workplace identification of dementia, employee retention and managing the wider work team around the person with dementia. Chapter 5 addressed Study 3, employer approaches to employees with dementia at work. This chapter extended existing research exploring the experience of dementia at work. Four groups were engaged in semi-structured interviews: (1) employers and human resource (HR) managers; (2) professionals supporting employers such as HR consultants; (3) employees with dementia who were working or had left work within the past two years; and (4) professionals supporting people living with dementia. The study identified employee and employer actions and assessed how dementia could be managed using relevant information and approaches to maintain viable employment. As well as the need for greater awareness of workplace cognitive impairment, this study identified solutions to prolong employment. Suggestions included using relevant expertise and external peer support, implementing self-management and personal strategies, raising employer awareness of employee rights and employer responsibilities, employee engagement in decisions about them and their work and assistance with the transition from work. An analytical approach, considering the person, task and organisation may assist in devising more effective employer implementation approaches. Study 4, guidance model document feedback (presented in Chapter 6), evaluated two model guidance documents (one for employers, the other for employees) developed from Studies 1, 2 and 3. This study aimed to determine the relevance and completeness of the content and identify potential enhancements. Study 3 participants were recontacted for this study. The proposed documents were received positively. Suggested improvements included care in the use of terms such as ‘dementia’, moving beyond ‘dementia friendly’ to inclusivity and clearer specification of the responsibilities of HR practitioners and employers. Chapter 7 placed the findings across the four studies into the context of increased workplace and societal attention to mental health, wellbeing, cognitive fitness and neurodiversity. Growing awareness of these issues is argued to be positive for future workplace understanding, acceptance and management of conditions such as dementia and cognitive impairment. HR leadership and expertise in dealing with dementia in the workplace are pertinent to achieving this goal. This thesis elaborates on the practical importance of information and communication in understanding cognitive impairment at work. Awareness that individuals in the early stages of cognitive difficulties maintain the capacity to continue to work can be improved. A review of information designed to support workplace decision-making has identified content and pathways to improve workplace knowledge and awareness. In conclusion, dementia at work can be managed by integrating awareness of dementia with mental health and cognition in workplaces. Greater attention to the diversity of cognitive abilities and processes in organisations can improve the life experience of employees living with dementia, their contribution to work, overall work performance and satisfaction.

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