The World Health Organization estimates that 35.6 million people worldwide early onset dementia and of these, 10 per cent are under 65 years of age and potentially still in the workplace. In the face of an aging population and workforce, this has implications for employers, the workers themselves, and practitioners, yet there has been limited research conducted into this emerging public health issue.
In response, researchers Shona McCulloch, David Robertson and Pamela Kirkpatrick of the United Kingdom conducted a literature review to identify and synthesize the best evidence regarding the needs, experiences and perspectives of people with early onset dementia (OED) or mild cognitive impairment (MCI) who were employed or wished to be. The researchers were also concerned with the views and experiences of those who deal with this population, including co-workers, employers, caregivers, and practitioners in social, health and government organizations. The ultimate objective of the review was to improve delivery of services to this group.
The researchers employed a systematic review to find the qualitative studies that would meet their needs. Of the some 17,000 unique articles that resulted initially from their search, a reading of the abstracts and summaries yielded eight articles that met their inclusion criteria: consistency between the research methodology and other key aspects of the study, including philosophy, objectives, data collection methods, and interpretation of results; how well the influence of the researcher is addressed; ethicality of the research; how representative participants are; and how conclusions were drawn from the analysis and data.
Four themes in individuals’ response to their situation emerged from the review:
- Disease progression and recognition: lack of awareness or denial of underlying dementia pathology by individual; recognition of pathological changes by co-workers, family members and caregivers; difficulty in obtaining a formal diagnosis.
- Emotional impact of change on ability to work: feelings of being under scrutiny, resulting in reported feelings of stress, guilt, depression, fatigue and boredom; self-questioning of competence at work; feeling unable to share fears and emotional state.
- Employer’s management of worker: perceived lack of consultation about management decisions; feelings of being abandoned by workplace; feeling traumatized by cessation of work, leading to negative financial, emotional and interpersonal outcomes, despite the fact that supported employment (people with disabilities assisted with obtaining and maintaining a job through job crews, enclaves, or job coaches) has been shown to improve well-being.
- Changes to worker role: difficulty making sense of how quickly the work situation was changing; continued belief in continued competence, despite realization of impairment, if an adjusted work role could be negotiated; belief in importance of fighting for dignity at work, or relief in not having to work; financial hardship from being asked to retire, sometimes improved by financial compensation, supported employment, or volunteer work at the organization.
This review highlights the potential for occupational therapists to engage this client group in vocational rehabilitation. Important to younger people with dementia was their loss of role at work, resulting in resentment towards the employer, distress to the individual and family, depression and anxiety, and loss of status within their social network. The review pointed to the critical importance of normalizing the provision of a range of services that includes those focused on employment, which could reduce stigma and promote social inclusion. Supported employment offers a continuation of the worker role, while improving well-being and providing meaningful occupation, structure and routine. However, as the review identified, there was a lack of awareness of legislation regarding work adjustments for people with cognitive impairment.
This review would be of interest to practitioners and employers desiring to improve the treatment of and outcomes for workers with cognitive impairment, who would be expected to represent a growing proportion of the workforce as our population continues to age.