“Nobody has even thought that people with dementia could be supported to be employed": Exploring perspectives of Australian workers with dementia about diagnosis, workforce participation and transition to retirement experiences

In response to an ‘ageing’ global population, government policies in developed economies are raising the age of eligibility for retirement pensions and promoting workforce participation rates of workers over 45 years. Since the risk of developing dementia increases with age, an increase in the numbers of people experiencing the onset of dementia whilst still working is likely. Dementia refers to a set of symptoms of cognitive decline that gradually impact on memory, thinking, daily activities and work capacity. Therefore, onset of dementia in workers, both younger and older, poses significant social, economic, and health concerns for both employees and employers.

Research examining perspectives about engagement in meaningful occupation among workers experiencing onset and progression of dementia is limited. It is also unclear if legislation in Australia and other countries that dictates approaches to reasonable adjustments for people with other disabilities, are routinely adopted for those with dementia.

Using narrative inquiry [NI] methodology, this thesis explores the stories of ten Australians who experienced onset and progression of dementia symptoms while in paid work and their perspectives about their transition to retirement. A stepwise approach to data analysis revealed six critical moments in the storytellers’ work to retirement transitions: (i) experiencing dissatisfaction at work; (ii) having an awareness that something is not quite right; (iii) knowing something is wrong triggers the search for a diagnosis; (iv) putting things in perspective after diagnosis; (v) extending workforce participation; and (vi) finding new beginnings when formal work ended.

Key enablers supporting individuals’ choices about extending workforce participation and transitioning to retirement were identified: (i) informal support from employers around adjusting work hours and duties when they disclosed their dementia diagnosis; (ii) employer support to navigate the medical retirement process; and (iii) practical and emotional support provided by family members, usually a spouse, prior to and after diagnosis.

Of concern was the extensive and enduring nature of the prejudicial responses that negatively impacted storytellers’ access to timely diagnosis, formal support for extending workforce participation and smooth transitions to retirement. For most storytellers, intersectional stigma based on age, gender, and dementia delayed diagnosis. Multiple and overlapping forms of occupational injustice was experienced across the work to retirement journey. Opportunities to extend workforce participation legislated under the Australian Disability Discrimination Act (1992) and a dignified transition away from their worker role were negatively impacted. This included denial of timely access to appropriate medical investigations, workplace adjustments, a planned transition to retirement or medical retirement provisions. Whilst some storytellers were able to effect control by not disclosing the nature of their health condition or by making personal informal adjustments to their employment arrangements, significant financial losses and the abrupt deprivation of occupational roles and identity frequently occurred. Despite challenges, storytellers demonstrated resilience in adapting to remain engaged in work or transitioning to new roles as symptoms progressed.

Based on these findings, health professional and employer education programs have been recommended. However, education alone will not be sufficient to address the enduring and pervasive nature of the intersecting social injustice issues reported by storytellers. Stereotypical assumptions that people with dementia cannot and need not be supported to extend workforce participation must be challenged.

The complaints-based nature of disability discrimination legislation is a significant barrier for people with dementia. Therefore, this thesis informs advocacy e\orts of people with dementia themselves, their family members, and allies to hold employers, health professionals and other stakeholders accountable for supporting workforce participation and transition to retirement entitlements. Support for pursuing complaints and enforcing penalties for denying workers with dementia support afforded to other workers with a disability is required.