Abstract
BACKGROUND:
There is limited information focussing on the perspectives of persons with younger onset dementia (YOD) in employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement.
OBJECTIVE:
The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD.
METHODS:
Records were included if they: considered working-aged persons who received a diagnosis of YOD whilst employed or soon after ceasing employment; considered the perspective of the person with YOD; and were published in English. Four databases (CINAHL, PubMed, Embase, Cochrane Library) were systematically searched, and grey literature was sought using the Google Scholar search engine. Using PRISMA-ScR guidelines, two reviewers screened the title/abstract then full text of identified documents. Disagreements were resolved with a third reviewer. Research papers were narratively synthesised, thematically analysed, and critically appraised.
RESULTS:
Fourteen peer-reviewed research papers, and nineteen grey literature items were included in the review, with research papers found to be of reasonably high methodological quality. Five themes were identified, describing the experiences of employees with YOD: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement.
CONCLUSION:
Findings revealed evidence for an emerging understanding of the lived experience of developing YOD within the workplace; however, further research is needed regarding the capabilities and support needs for persons with YOD to influence workplace policies and practices.
Introduction
Younger onset dementia (YOD) is a progressive condition which affects a person’s ability to function in daily life and carry out their meaningful occupational roles [1]. The younger age of onset means that affected people may still be of working age, highlighting implications for employment retention. Maintaining paid employment has substantial ongoing financial, social, intellectual, and emotional benefits for the individual and their family [1, 2]. While some literature has considered this issue from the perspective of employers and carers, a preliminary search has revealed limited evidence regarding the experiences of persons with YOD themselves within employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement. Gaining insights to what is known in the literature regarding the voices of employees with YOD can inform development of further research using codesign principles and consumer informed strategies which could greatly influence their workplace participation and continuance [2, 3]. The aim of this scoping review is to explore the experiences of people with YOD in the workplace to: identify support and intervention opportunities; inform future collaborative research; and consider codesign opportunities, ultimately informing change to workplace policies and practices.
Younger onset dementia
If dementia is diagnosed before 65 years of age, the term YOD applies [1]. There are several different types of dementia that can occur at a younger age, resulting in a diagnosis of YOD including Alzheimer’s disease, Vascular, Fronto-temporal, Lewy body dementia, and Parkinson’s disease [1]. Persons with YOD may experience neurocognitive decline affecting attention, memory, language, perceptual-motor, and social cognition [4], as well as challenges with emotional regulation, difficulty managing relationships, and neuropsychiatric symptoms such as depression, hallucinations, and delusions [4, 5], all potentially impacting on their identity and employment [2, 3]. The symptoms, and their impact on daily tasks, will depend on the type of dementia and the brain region which has been affected [4].
The global prevalence of YOD is known to be 119.0 per 100 000 population [6]; however, data from low-income countries is scarce [6]. The most recent estimates suggest that 70,800 people in the United Kingdom [7], about 200,000 Americans [8] and 28,800 Australians [9] are living with YOD, with numbers expected to increase to 43,200 by 2058 [9]. There are no specific published data on the national or international costs of YOD; however, in 2015, the total global societal cost of dementia was estimated to be US§818 billion, equivalent to 1.1% of global gross domestic product (GDP) [10]. Although YOD accounts for only about 5– 10% of all dementia, it occurs when most people are employed, so the total costs of YOD are complicated by the removal of people from the workforce [9, 11].
Younger onset dementia and employment
If employed, YOD affects the worker role, eventually resulting in transition out of the workplace. Opportunities to engage in meaningful work contribute substantially to self-esteem, personal identity, psychological well-being, social networks, and quality of life [12], as well as providing an income [13]. If employed when diagnosed, dementia can impact on ability to perform workplace tasks [14] and, ultimately, on capacity to continue to engage in paid employment [15]. On the other hand, employment can also contribute to delaying the cognitive and functional decline of dementia [16].
Legislation exists to support employees with a disability to maintain remunerative employment, including: the Disability Discrimination Act 1992 in Australia; The Americans with Disabilities Act (ADA) in America; and The Equality Act 2010 in the United Kingdom [17–19]. Reasonable adjustments to support persons with YOD to remain within the workplace can include modifying the physical environment, reviewing the person’s workplace role, providing access to training for the employee, and/or providing supervision or guidance to enable an employee with YOD to continue completing their work duties [20, 22].
Despite this legislation and the documented benefits of continued employment [23], many employers do not make reasonable workplace adjustments to enable employees to retain their worker role [3, 24]. Persons with YOD have reported traumatic cessation of paid employment [24], with negative financial and psychological consequences [13, 25].
In keeping with the predicted increase in numbers of persons with dementia overall, numbers within workplaces are also expected to increase substantially [24]. Reasons for this increase include: the predicted increased in people with YOD worldwide; the greater number of older workers as the ‘baby boomer’ population ages [26]; the removal of the statutory retirement age in some countries, including the United Kingdom [27]; and increases in the eligibility age for the aged pension [28, 29]. For example, the eligibility age for the aged pension increased to 67 years in 2022 in Denmark [30, 31] and in 2023 in Australia and the United States, [27, 28]. Thus, finding ways to support persons with dementia in the workplace will become increasingly important in coming years.
Although five reviews regarding YOD within the workplace were published between 2015 and 2020 [2, 32], the perspective of the person with YOD regarding this experience and related role transitions was not the focus in any of these reviews. Instead, the perspective of the employer and/or spouse/carer are more evident. Andrew et al.’s scoping review [2] focussed primarily on the employees’ perspective of how dementia impacts on participation in workplace roles, whilst McCulloch et al.’s systematic review [12] examined how employers manage employees who develop mild cognitive impairment or dementia within the workplace, their limited understanding of reasonable adjustments and suggested a potential role for occupational therapists. A literature review (type not specified) by Silvaggi et al. [14] discussed how support within the workplace can assist employees with dementia or mild cognitive impairment to remain employed. Ritchie et al.’s integrative review [21] looked at the implications of developing dementia within the workplace for employees, their families, and employers, while Thomson et al.’s systematic review [32] examined the management of employees with dementia within the workplace. It is important to understand what is known about the lived experience of developing YOD in the workplace to inform development of more tailored strategies to improve workplace retention and transitions.
The present study
This review paper was conducted in response to this need to explore current understandings of the lived experience of people with YOD in the workplace. Gaining a better understanding of the literature available in this field will inform future research directions, development of guidelines to support this demographic within the workplace, and development of more tailored and codesigned strategies to improve workplace retention and transitions for persons with YOD.
Methods
Identifying the research question
Given the limited focus on the unique perspectives of persons with YOD within employment, what might be termed their “voice”, the aim of this review was to address the question: “What does the literature reveal about the employment role transitions from the perspective of persons who develop YOD whilst in employment, reflected in their own voices?”
Scoping review methodology
A scoping review is indicated when there is emerging evidence on a topic, and the goal is to obtain an overview of all the literature, including a range of study designs, and both peer reviewed and grey literature [33–36]. Arskey and O’Malley’s [36] five stage scoping review methodological framework was used [33]: (a) Identifying the research questions; (b) Identifying the relevant studies; (c) Study selection; (d) Charting the data; (e) Collating, summarising, and reporting results. The review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) checklist [35]. All authors were involved in stages a and d– e; two authors completed stages b and c. The scoping review was registered with Open Science in January 2024 with registration doi: https://doi.org/10.17605/OSF.IO/HR7EW.
Identifying the relevant studies
Both peer-reviewed and grey literature were included in this review. Peer-reviewed literature was sought by searching four databases: CINAHL; PubMed; Embase; and Cochrane Library, between May and July 2022, with the assistance of an academic librarian. The search strategy was developed and trialled in CINAHL as follows: keywords: (younger onset dementia) AND (adult or person or worker) AND (employment). The Medical Subject Heading (MeSH) term “Dementia” was used to capture all papers in this field initially. The limits applied were: English AND (adult: 19 – 44 years) AND (middle aged: 45 – 64 years). Age limits were recommended by the academic librarian to obtain a narrower focus and reduce irrelevant articles. This was then adapted and used in all included electronic databases. Use of more specific terms such as YOD and early onset dementia did not generate any additional papers. Publication date and study methodology were not restricted.
Grey literature was sought in June and July 2022 and January 2024 using the Google Scholar search engine, using the search terms “younger onset dementia and employment.” Based on literature and advice from the academic librarian, Google Scholar was deemed an appropriate and adequate search engine to locate many grey literature documents that are not located in library databases [37]. When searching grey literature for systematic reviews it is recommended that searches of article titles focus on the first 200 to 300 results [37]; therefore, all 147 Google Scholar results were searched. Hand searches were also conducted from reference lists of identified articles. The inclusion/exclusion criteria for papers are presented in Table 1.
Inclusion and Exclusion Criteria
Inclusion and Exclusion Criteria
As shown in Fig. 1, 19 records were identified through database searching, and 152 via additional sources (Google Scholar and hand searching). Nineteen duplicates were removed, then 12 records were excluded for not fulfilling the inclusion criteria based on title/abstract. Full text records (n = 140) were screened, with 107 removed for not fulfilling the inclusion criteria. Fourteen peer-reviewed records and 19 grey literature items were identified for inclusion. Grey literature was only included if authors were 100% confident that it was, in fact, the voice of the person with YOD.
See attachment for details.
While scoping reviews do not typically assess the methodological quality of the included studies [34], failing to do so can make results more difficult to interpret [38] and can impact on the ability to utilise findings in practice or for informing policy [39]. Therefore, methodological quality of peer-reviewed papers with original study designs were appraised by two authors. Case study and grey literature are not readily appraised with a standard appraisal tool. Grey literature was considered of particular interest when the information had not been found within a peer-reviewed paper. In contrast to systematic reviews, in scoping reviews no attempt is made to present a view regarding the ‘weight’ of the evidence in relation to particular interventions [34]. This is because scoping reviews aim to rapidly map the key concepts, sources, and types of evidence available in a research area, particularly if it is complex, or has not yet been reviewed [36]. The focus of a scoping review includes investigating the nature of the existing research, preliminary mapping (including the value of undertaking a systematic review), summarizing and disseminating findings and identifying research gaps [36]. Scoping reviews do not seek to assess quality of evidence and consequently cannot determine whether particular studies provide generalizable findings [34].
The McMaster University Critical Review – Qualitative Form (version 2.0) [40] was used for qualitative studies. For this form, each ‘yes’ response scored one point, with a maximum score of 23 points [40]. Total critical review scores were calculated to allow for numerical comparison between studies. The Mixed Methods Appraisal Tool (MMAT) was used for the mixed methods study [40] and the quantitative study [41]. The MMAT discourages scoring; however, for each criterion, reviewers allocated either a ‘yes’ or ‘no’ response, depending on whether the study met the criterion [40, 42]. A third author was consulted to manage any dissent.
Charting the data
The research team developed a data-charting form using an Excel worksheet. Charting was an iterative process, where researchers continually extracted data and, following discussions, updated the form – including the headings and the amount of detail included. The final headings for Table 2 (peer-reviewed records) were: 1. Author(s), year, country; 2. Sample; 3. Research design; 4. Type of dementia; and 5. Key findings. Final headings for Table 3 (grey literature items) were: 1. Author, year, country; 2. Type of grey literature; 3. Purpose; 4. Type of dementia; 5. Voice of the person with YOD; and 6. Key findings. One author independently extracted the data from all the papers using these headings. Two additional authors extracted data from five sources each and met to determine whether their approach to data extraction was consistent [35].
Study characteristics of peer-reviewed literature
Study characteristics of peer-reviewed literature
*Persons over 65 years of aged were included, as they received their diagnosis under 65 years of age, and it was thought their workplace experiences would be valuable.
Characteristics of grey literature
Tabulated data was analysed using basic narrative description and thematic analysis, reporting patterns (themes) within the data [43], as recommended for maximising the rigour and credibility of scoping review studies within healthcare [34]. Thematic analysis is a six-step process which involves: 1. Familiarising yourself with the data by transcribing, reading, and re-reading the data while taking note of initial ideas; 2. Generating initial codes by documenting interesting features of the data in a systematic fashion across the entire dataset, collating data relevant to each code; 3. Searching for themes by collating codes into potential themes, gathering all data relevant to each potential theme; 4. Reviewing themes to check if the themes work in relation to the coded extracts and entire data set, and then mapping the analysis; 5. Defining and naming themes through further analysis and refining of each theme; and 6. Producing the report through the use of extract examples, final analysis relating to the research questions, and review of the literature [43]. All authors were involved in stages 1 and 4– 6, and two authors completed stages 2 and 3.
When collating and summarising the results for a scoping review, researchers need to prioritise certain aspects of the literature [36]. Participants’ quotes were the primary focus, as these were directly from the voice of person with YOD. These were located in the findings/results section of full-text papers, and the full-text of the grey literature. The researchers’ information/comments on the context and background of these quotes were read and considered to ensure an accurate understanding and interpretation of the quotes. The researcher’s interpretation was primarily contained in the discussion section of these papers, and was not considered within our scoping review, as our focus was on the voice of the person with YOD and analysis of their perspectives.
Researchers employed an inductive, or ‘bottom-up’ approach to theme identification [43]. This means that as the data has been collected specifically for the research (i.e. via interviews), the themes are derived from the researchers data [43]. Since these themes are data driven, they do not try and fit within pre-existing coding frames, they might not mirror the exact questions asked of participants (e.g., if participants veered off topic), and they are not necessarily reflective of the researcher’s own interests or beliefs on the subject [43].
Results
The study characteristics for each of the peer-reviewed records (n = 14) can be seen in Table 2. Items were from the United Kingdom, United States of America, Japan, Sweden, Ireland, Canada, Finland and Australia.
A summary of the 19 grey literature items is provided in Table 3. All items were from the United Kingdom, the United States of America, or Australia, except for one item from Spain.
Study quality
As seen in Table 4, the methodological quality of the 11 qualitative studies revealed scores between 19 and 22 out of 23 points as measured by the McMaster University Critical Review – Qualitative Form. Despite minor methodological limitations, the overall quality of these studies was high. The methodological quality of the mixed methods study [22] and quantitative study [41] as per the MMAT were also reasonably high.
Summary of Critical Appraisal of Scoping Review (Qualitative) Original Research Articles (Total n = 11)
Summary of Critical Appraisal of Scoping Review (Qualitative) Original Research Articles (Total n = 11)
Analysis of the tabulated data revealed five themes which reflect the progression of the YOD condition within the workplace and beyond: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement. These themes, and related subthemes, are discussed in detail below.
Trying to manage difficulties prior to diagnosis
The first theme focussed on the early stages of dementia, typically prior to diagnosis, with the sub-themes of: dawning awareness of YOD; covert management; awareness from others; and stigma. The dawning awareness of YOD and what the employees did to minimise this impact, was the predominant topic. Persons with YOD first noticed their difficulties within the workplace occurring gradually [3, 44]. Difficulties with visuospatial tasks [21, 22], memory, concentration, and decision-making [45] were particularly noted. These difficulties often presented initially within the workplace as being unable to use equipment, leaving work tasks unfinished [3], outbursts of anger and aggression [46], difficulty learning new information and tasks, making mistakes, problems with communication, difficulty coping with usual stressors, reduced quality of work, requiring more time to complete tasks, and increased work absences [15, 46]. Initially, participants attributed these difficulties to being in new work roles, technology, workplace stressors, and reducing physical skills (such as declining vision) [15, 24]. One person stated: “I couldn’t even use the photocopy machine, which I used to take for granted and I thought that was strange. I ignored the symptoms whilst continuing to work” [24 p5].
Once workers had developed insight into their workplace difficulties, they described trying to covertly manage their mistakes and challenges to continue carrying out their workplace tasks. To do this, employees experimented with memory aids including notes, memos, tape recorders, and calendars; however, they often noted that the efficacy of these aids were impacted if they forgot to bring them or to use them when they were available [22].
As time progressed, these employees realised the awareness from others, as their difficulties were noticed by employers, work colleagues, and partners [15]. Participants reported that they started feeling viewed as a poor worker, while noting the additional support they needed from their spouses, such as purchasing them a diary, offering suggestions, and assisting them to manage their work life [3]. Employees reported experiencing stigma, as they started being viewed as a poor worker, and their relationships with their employer and co-workers deteriorated as they were no longer effectively able manage conflict and complex situations [3]. Molly reported: “I think my boss was noticing things...she said I was getting too slow…so she saw something happening” [3 p271]. The stigma was perpetuated as they were unable to resolve the workplace issues and, without a diagnosis, there was no reasonable explanation for their deteriorating workplace performance. Harry reported:…“the assistant manager...said you’re bloody useless and it really upset me. The way that he did it...” [3 p271]. It was also evident that workplace difficulties impacted on their relationships with their family, particularly their spouse/partner [24]. A businessman reported (about his wife): “…Sylvia has an excellent memory…so she would whisper the name of the person to me, particularly if it is someone who is a client of the company” [24 p152].
The point of diagnosis
The second theme focussed on the point at which a diagnosis was obtained. Four sub-themes were identified: receiving a diagnosis; challenges of disclosure; external and internal stigma; and supportive after realising. When receiving a diagnosis, persons with YOD displayed mixed feelings, with some expressing shock, whilst others were quite relieved to receive a diagnosis [3, 44]. One participant reported: “...I felt like I was hit by a sledgehammer...I felt as though somebody had pulled the plug out of everything…” [5 p4]. Another participant revealed: “...one of my major stressors was getting my doctor to believe that it’s more than stress, depression or burn out’ [44 p35]. Some employees believed they could continue working initially following their diagnosis, as they still retained many valuable skills, and their ability to complete all their workplace tasks had not been affected [15]. These employees noted a difference between not being able to fulfil a specific workplace role and not being able to work at all. Nevertheless, some recalled their physicians advising them to either immediately take a percentage of sick leave, or to leave work completely [47].
The second subtheme identified by employees at point of diagnosis was the apprehension and challenges of disclosing their diagnosis to their employer and work colleagues, due to the fear of their employers’ and work colleagues reactions, and the absence of a formal support system in their workplace to enable them to continue working [15, 47].
This seems to be perpetuated by some experiencing external stigma, whereby employers had negative assumptions about their capacity to continue working [15, 47]. They had views about limitations that should be imposed on them post-diagnosis, which were often specific to the workplace. For example, two participants were dismissed immediately after their diagnosis [15]. Carol reported: “I didn’t take the doctor’s advice on diagnosis, and I continued to work until the next year…it wasn’t until I lost my driver’s licence that I needed to give up work. That employer should have been obligated to find me alternative work, just like if I’d had a car accident or a stroke….so there’s a significant amount of discrimination and stigma out there still” [3 p274]. When his employment was terminated upon disclosing his dementia diagnosis to his employer, one participant reported: “I feel the situation was taken behind closed doors…it was a case of yes he’s got it and we’re not prepared to even look for anything…” [24 p154]. Another participant stated “…if you’re working, can’t you stay working?...I need someone to come negotiate with me which jobs I can do and which jobs that I can’t do” [47 p75].
This often led to the person with YOD experiencing internal stigma. One person stated: “When people hear that you have dementia, they say that it’s too dangerous for you to go out alone. This ends up leaving the person living with dementia as someone who can’t do anything for themselves” [46 p6].
Despite initial concerns about disclosure, some participants reported that supervisors and work colleagues were more supportive after realising they had YOD [15, 47]. With the support of “local arrangements,” (including education on dementia) one employee reported a type of strategic disclosure, where he “staged coming out” to his supervisor and work colleagues: “I staged kind of a ‘coming out’ about my current medical condition. Now that everyone realises what it’s about, everyone has been more understanding…and it’s starting to be easier to do my work” [15 p5]. Simon disclosed his diagnosis to his closest boss three months into a six-month contract to find that his boss had not even noticed any impact on his work performance and was supportive of him continuing with his contract [48]. However, after six months, Simon discovered he had not fulfilled the role responsibilities, so he could not re-apply for the position, which resulted in a mutual acceptance of his retirement [48].
Reasonable adjustments
The third theme involved the process of obtaining reasonable adjustments to sustain the worker role. Making the disclosure was a necessary part of being able to negotiate reasonable adjustments [15, 22]. Two subthemes were identified: negotiating reasonable adjustments; and being valued within the workplace. Employees described diverse experiences regarding the negotiating reasonable adjustments, with some being able to successfully negotiate their work tasks with appropriate support [21, 24] while others felt disempowered and unsupported [15]. Where reasonable adjustments were implemented by employers, these included using notebooks, mobile phones, tablets, voice recorders, identifying more simplified tasks, reducing the number of tasks and time pressures, arranging additional supervision and support from work colleagues [3, 22], and even redeploying them to a different role [48]. Some employees felt that, even when their organization had a policy of offering redeployment, it was not seriously considered [21]. “The first meeting we went to, they said there were three options, retirement, retirement due to ill health and redeployment, however redeployment was just mentioned and moved on” [21 p2159]. Adjustments also included being permitted to take a rest during the day [15], employing another person to complement their challenges, or reducing the number of hours worked [22, 24].
The approach to implementing reasonable adjustments impacted on the employees feeling valued within the workplace. Generally, persons with YOD indicated that they were open to these adjustments to enable them to remain in employment for a longer period [3, 48]. Although acknowledged as needed, the way in which it was managed was sometimes considered inadequate [24], with the support being inappropriate [15] and leaving people feeling devalued. Some noted that managers or work colleagues arranged adjustments without formal consultation (e.g., being taken off “main duties” and assigned to work in pairs) [24]. Situations where the employer consulted the employee in collaboration with their physician and human resource department and offered reasonable adjustments seemed to be well received and, as a result, employees reported feeling more positive towards, and valued by, their employer [22].
Employment cessation
The fourth theme focussed on employment cessation and was described as a difficult time by all persons with YOD, whether it occurred pre- or post-diagnosis [13]. Sub-themes identified included: traumatic experiences; and financial concerns. While time from diagnosis to ceasing employment was not specified within included documents, termination ranged from immediate to eventual [13, 24]. Several reasons were provided for difficulties with employment cessaion including: ceasing work much earlier than they had anticipated [21]; that it was often unplanned [13]; and that it was not within their control [5], and sometimes being directed by their treating physician [21, 24]. Joe’s wife stated: “….his specialist just said you shouldn’t be working Joe…we burst into tears, rang up his boss and said, ‘I resign.’…Looking back it was really dumb because he probably could have gotten some sort of pay-out or something [16 p273]. Most employees also reported a lack of consultation regarding ending their employment [21]. Edward stated: “I was sat at home and no decisions made until much later they suddenly said ‘we’re going to retire you” [21 p2160]. Employment cessation was particularly difficult for those who did not yet have a diagnosis, as they felt they were not given time to ascertain any medical reasons for the decline in their workplace performance [21].
A range of employment exits were described, from situations where persons with YOD ‘walked out’, were made redundant, were ‘fired’, or did not return to work following a period of sick leave [13, 21]. Two persons with YOD [24] reported that they went on sick leave and were not contacted by their employer until more than a year later. These employees felt stressed, treated unfairly, and ‘pushed out’ of their respective positions [24 p155]. There were substantial individual differences regarding the employees’ willingness to resign. Those more accepting of the diagnosis resigned prior to, or in response to, their diagnosis, believing they were no longer able to competently complete their workplace tasks. Those who were aware they were performing poorly and were losing their confidence, expressed relief at ceasing work, with some acknowledging that it would be unsafe for them to continue working [21, 24]. This was particularly the case for persons with YOD whose symptoms directly impacted on their work role, including a journalist whose communication skills were affected, and a heavy goods vehicle driver whose driver’s licence was not renewed [21].
The experience of ceasing employment varied for participants, with issues such as stigma, shame, identity, and financial concerns. Some described experiencing internal stigma after leaving work, stating “…I was ashamed…I was so terribly ashamed…Because I had always been working” [45 p14]. Persons with YOD also reported “losing one’s value” once they ceased work, which was often described as “depressing” [45 p14]. Importantly, participants who reported that their workplace contributions were acknowledged and celebrated prior to them leaving the workplace felt that employment cessation was a little easier to accept [3].
The second subtheme in this section, financial concerns, included both the direct and indirect costs of YOD [13, 47]. Not only were participants not receiving an employment income, but they also found they had additional expenses associated with their diagnosis, such as transport, appointments, and equipment and modifications to make their homes safer [47]. The withdrawal from paid employment placed greater pressure on their families, often with the spouse becoming the sole income provider [13]. Some persons with YOD needed to request financial assistance from their children, and there were concerns with being able to manage until they are eligible for their superannuation [44]. Nygard et al. [48] reported challenges negotiating the government’s financial support system, with some participants waiting for a government decision regarding sickness benefits, prior to being able to apply for a retirement pension.
Regaining meaningful activity after transition to retirement
The final theme focussed on regaining a meaningful lifestyle following retirement. The subthemes within this theme were: the need for meaningful activity; and the feeling of being valued outside the workplace. Prior to their transition to retirement, many persons with YOD attributed great meaning and pride to their worker role. Following retirement, the need for meaningful activity was identified: “I feel a bit like…totally useless. I just potter around trying to look busy but I’m not doing a whole lot in fact…I’m simply trying to do things that are useful and have some value…It’s nice to have something to do…” [13 p892]. Participants highlighted the importance of engaging in activities aligned with their level of functioning and to be perceived as being helpful towards others [22]. This included housework, washing the car, walking in the forest, gardening, spending time with their family [22], swimming, travelling, doing crosswords, and looking after their dog [5]. One person with YOD started teaching human movement classes until it became too difficult, then she started teaching at a community centre for persons with dementia [3].
Participants in one study [45 p14] described the importance of ‘continuing life’ and ‘not staying in the corner’ by commencing new, meaningful activities, which assists in the feeling of being valued outside the workplace. With time, participants were able to focus on the positives of not working anymore and find renewed value in life [45]. While dementia-specific support groups were valued by some participants, it was acknowledged that age-appropriate support and activities were also important, with persons with YOD often having different needs and concerns than those with late-onset dementia [5]. Three participants discussed being referred to the YOD service in their local area, which enabled them to become involved in various social and leisure activities [24]. One participant specifically reported being able to regain a sense of personal significance, and rediscovering how to live, by finding joy in new social activities and interacting with other people with YOD [15]. However, not all participants were able to access such services [18] and some expressed frustration at the lack of opportunities and support for persons with YOD to engage in activities upon retirement [3, 21].
Discussion
In addressing the research question: “What does the literature reveal about the perspective of persons who develop YOD whilst in employment, reflected in their own voices?”, this scoping review revealed only a small number of relevant studies and additional grey literature items. Five themes were identified that reflect employee experiences throughout the period from emergence of symptoms to the transition to retirement.
Trying to manage difficulties prior to diagnosis
Findings indicated that, prior to a diagnosis, persons with YOD were hesitant to disclose their workplace challenges for several reasons, which included the belief that they could self-manage these adequately. When this was not possible, employees, their spouses, colleagues, and employers began to notice their declining performance and work resulting in varying levels of support. Internal and external stigma occurred when employees were found not to be able to maintain their workplace responsibilities. Stigma is a feeling of intense shame, and involves a loss of status, power, discrimination, and negative stereotyping [49]. In relation to dementia, internal stigma, when the person with dementia feels shame towards themselves, and external stigma, when the attitudes and values of family members, work colleagues or the public result in feelings of shame [50]. Stigma impacts on willingness and time to disclose their diagnosis and to seek support once diagnosed, as well as quality-of-life, and can be exacerbated by incorrect information and language [50].
Disclosure at the point of diagnosis
While external stigma was identified, findings of the present study also revealed that employees often experienced positive outcomes from disclosing their YOD diagnosis, with disclosure assisting both employers and work colleagues to understand and support them, and legally enabling them to receive reasonable adjustments in the workplace. However, less positive outcomes have also been reported by persons, including Christine Bryden. Christine was a science advisor to the Prime Minister in Australia and has been a prominent dementia advocate and author since being diagnosed with YOD in 1995, at 46 years of age [51]. She described her disclosure as a ‘coming out’ when she was brave enough to share her diagnosis with the public [51]. She then battled stereotypes, which included not being regarded as a credible representative for the other people with dementia [51]. There are many factors that influence whether to disclose a disability diagnosis, when to disclose it, to whom, and the level of detail shared [52]. This includes a fear of being discriminated against, or treated less favourably by other people [53, 54]. Whilst it has been acknowledged that it is important to challenge the stigma so that people with YOD are treated equal to other employees [45], clear guidelines and strategies for employees and employers on how to manage this stigma once it occurs within the workplace have not yet been articulated within the literature.
The broader literature suggests that experiences of stigma are not limited to persons with YOD, with similarities identified in relation to acquired brain injury (ABI) [54] or a mental health condition [53, 55]. Strategies to reduce workplace stigma for persons with an ABI may also be beneficial for reducing stigma for persons with YOD. These strategies include: educating service providers about how to discuss disclosure with their clients; educating employers and workers about the strengths and abilities of persons with an ABI and how to address stigma when it occurs; educating persons with ABI on their employment rights; on how to lodge a formal workplace complaint and providing support to communicate employment concerns with managers [54]. For mental health consumers in the workplace, disclosure is considered important as it can result in improved relationships, authenticity, supportive work environments, and a more friendly culture; however, it can also contribute to stigma and discrimination [53]. In recognising that employers’ knowledge of workers with mental health conditions needs to be enhanced, Brouwers et al. [53] demonstrated that ‘strategic disclosure’ reduces stigma. Strategic disclosure considers who to disclose to, when to disclose, how to prepare, and the content and communication style of the message. The occupational competence model [55], which considers the person, occupation, and environment, has also been shown to facilitate a shared understanding of the challenges and strategies to enable a successful and collaborative return-to-work for mental health consumers [47]. Given the limited information in the literature on employees with YOD, considering strategic disclosure and the occupational competence model for these individuals could be beneficial to minimise the associated stigma and discrimination within the workplace.
Reasonable adjustments
Despite legislation to support persons with YOD within workplaces being in place within Australia, United Kingdom, and the United States of America, evidence suggests that it is not being utilised consistently and appropriately [17–19]. There was no mention in any of the included articles of persons with YOD being aware of their legislative rights and whether the adjustments occurred in accordance with the legislation. It is unclear if this is because this question was not directly asked in the interviews, or whether persons with YOD lacked this knowledge. The experiences of persons with YOD also suggest that some employers had little knowledge of their legislative responsibilities. For example, one respondent reported that her employer should have assisted her to find alternative work; however, instead her only option was to retire [3]. Similarly, a nursing assistant, school meals assistant, and heavy goods vehicle driver stated they were not offered any form of reasonable adjustments [25]. It is important that employees are aware of their employment rights as this could impact on how the situation is managed, the employee’s ability to remain employed, and how they transition out of their work role. Importantly, persons with YOD are typically unable to access services and supports prior to receiving a diagnosis [21]. Without a diagnosis, employers have no legal obligation to provide reasonable adjustments, and employers could even take a performance management approach, where employees are managed out of their roles due to being perceived as ‘incompetent workers’ [45]. Therefore, it is important that, once employees with YOD have a diagnosis, they disclose it and identify work challenges to their employer to ensure their rights of reasonable adjustments are acknowledged and they are supported by their workplace.
Employment cessation and regaining meaningful roles following retirement
It is interesting to note that, similar to obtaining reasonable adjustments, persons with YOD had varying experiences of employment cessation, reinforcing the inadequacy in the management of YOD within the workplace. The literature seems to indicate persons with YOD who had received a diagnosis and/or had insight into their level of competence, had a more self-directed transition into retirement. Employees who received a farewell celebration from their workplace and were able to find meaningful post-employment occupations felt more valued by their community and experienced less stigma regarding leaving their workplace earlier than anticipated.
The implied outcome of greater awareness is reduced trauma and improved agency for the person with YOD. Greater understanding will increase the number of employees with YOD who have their legal workplace rights upheld, whilst promoting a workplace culture of compassion, collaboration, respect, and flexibility. It is anticipated that effective, consumer-centred strategies may provide more guidance to assist persons with YOD to remain within the workplace and contribute to them feeling valued, whilst reducing the direct and indirect international costs of dementia. Furthermore, effective strategies are thought to contribute to facilitating strategic disclosure, and reducing the stigma associated with YOD within the workplace.
Practical implications and research recommendations
There is currently no ‘best practice’ guideline available on how to appropriately support persons with YOD in the workplace. There are, however, dementia-awareness sessions that can be conducted within workplaces and some grey literature resources available for employers and work colleagues. Employees and employers may both benefit from greater awareness of resources, and there is a need to develop a ‘best practice guideline’ regarding how to collaboratively implement workplace adjustments, to support compliance with legislation. Persons with YOD may benefit from more information about their legislative rights, including reasonable adjustments and how to strategically disclose their diagnosis, dealing with external stigma when it occurs, communicating their concerns with their employer, and lodging formal workplace complaints [44, 45]. There is also a need to conduct research on the effectiveness of education and guidance to improve employees’ and employers’ knowledge, confidence, and effectiveness in managing these situations. Such research should include measuring the satisfaction and experiences of employees with YOD. Preliminary findings suggest that using clear, simple, and familiar technology could support persons in the early stages of dementia within the workplace [56]. More research is needed on the benefits of assistive technology to assist with workplace retention for employees with YOD. Further research specifically exploring successful support strategies identified by people with YOD would contribute positively to the conversation on supportive workplaces
There would be advantages to exploring the inclusion of a health professional, particularly an occupational therapist with experience working with persons with YOD. They could use their occupational therapy skills in administering assessment tools to determine the employee’s workplace capabilities, along with assisting their transition into meaningful retirement. Evidence has suggested occupational therapy interventions may improve work and leisure among adults poststroke [57]. There is currently no model, or framework being used to support employees with YOD. There could be value in utilising the occupational competence model [58], or similar framework, which outlines the workplace tasks that are likely to be achievable with the specific type and stage of YOD. Gore et al. [58] proposed a likelihood by impact risk matrix, along with a potential strategies matrix for risk management for risk mitigation for persons with dementia within the workplace. Further research on the identification and management of risk for employees with YOD is needed.
Limitations
This scoping review was conceptualised to consider the perspective of persons with YOD; however, as the insights of others may shed further light on this topic, it is important to interpret these findings in the context of the wider literature. The inclusion of articles published only in English may have omitted relevant studies in other languages. Finally, the fact that most of the studies were qualitative limits the nature of the conclusions that can be drawn, and the generalisability of the implications and recommendations. This may be due to the difficulty in recruiting sufficient participants for quantitative studies.
Conclusion
In this scoping review, the literature on the perspective of persons with YOD’s experiences regarding employment and their transition into retirement has been analysed. Dementia and YOD are worldwide issues, with substantial economic implications. Diagnosis is often a lengthy and challenging process and YOD negatively impacts on a person’s ability to perform their workplace tasks. Despite the known benefits of continued employment, many persons with YOD report a lack of collaboration and planning with their employer, resulting in feelings of disempowerment, and believing that their only option is to leave paid employment. There is sparse evidence on how to effectively support persons with YOD within the workplace. The findings of this scoping review suggest an urgent need for further research to increase the awareness of employment capabilities and support needs for persons in the early stages of YOD.
Ethical approval
Not applicable.
Informed consent
Not applicable.
Conflict of interest
Not applicable.
Footnotes
Acknowledgments
The authors would like to thank the senior academic librarians – Amanda Flanders and Kelli Stidiford for their support during the database searching stage of this review.
Funding
The Australian Commonwealth Government’s Research Training Program for providing funding for completion of the research higher degree candidates degree.