Managing employees with dementia: a systematic review

22 Background: The experience of developing dementia while in employment has been explored from 23 the point of view of the employee, but less is known about the perspectives, experiences and needs of 24 employers. 25 26 Aims: To review systematically literature about the management of employees who develop dementia 27 whilst in employment. 28 29 Methods: Databases searched included MEDLINE, EMBASE, PsycINFO, CINAHL, BNI, ABI 30 Inform, ISI Web of Science, Open Grey and dementia journals database; 44 documents were 31 identified for inclusion in the review: 22 journal papers, one PhD thesis and 21 articles, reports and 32 webpages from the grey literature. As all documents were qualitative in nature a thematic synthesis of 33 their content was undertaken. 34 35 Results: Three main themes and ten sub-themes were identified. The main themes concerned early 36 presentation and identification in the workplace; reasonable adjustments for people with working age 37 dementia; and the provision of information to raise awareness and facilitate informed choice. The 38 evidence suggested that there is a lack of awareness about working age dementia and that this may 39 impact negatively on employees. Guidance for employers offered suggestions for good practice. Conclusions: Guidance for employers is increasingly available although it rarely refers to the 42 evidence base. There is a need for future studies that explore the effectiveness of guidance and 43 training initiatives for employers. Examples of good practice where employees with dementia have been well supported in the workplace and who have been able to leave the workforce with dignity, 45 would be helpful.


Introduction
[10]. Literature searches were conducted from September to October 2016. Ethics approval was not 79 required as this was a systematic review. 80 81 All types of study design were included in the original search. These included both quantitative and 82 qualitative study designs (such as those involving focus groups, interviews or non-participant 83 observation). Participants were adults aged 18 and over who had a diagnosis of dementia or mild 84 cognitive impairment. Studies were excluded if focussed on Parkinson's disease or other neurological 85 disorders. Any reported occupational or employment-related outcome or topic was considered 86 relevant. The focus was solely on the employment of the person with dementia; studies that focused 87 on employment outcomes for carers were excluded. The studies could be performed in any country, 88 but papers were restricted to the English language. There was no limitation on the time period of 89 interest. Any reported work-related outcome or topic was considered relevant. 90 was obtained, independently inspected, and inclusion criteria applied by two reviewers. Disagreement 106 was resolved through discussion and checked by a third reviewer where necessary. Justification for 107 excluding articles from the review was recorded. In total, 69 documents from the scientific and grey 108 literatures remained. Following data extraction including full screening of all 69 documents, a further 109 22 were excluded for not including relevant material and three excluded as duplicates. The remaining 110 44 studies and articles were of seven broad categories (see Table 1). 111 112 [ Table 1 here] 113 114 For quality assessment of papers, the identification of criteria that are relevant to the specific review is 115 advocated. As the journal papers identified in this review were all qualitative, we used the Critical 116 Appraisal Skills Programme (CASP) tool. This tool was used to conduct quality assessments of 117 articles describing the collection of primary research data; quality assessment scores are presented in 118 Table 2. 119 The first over-arching theme related to the early presentation and identification of dementia in the 133 workplace. The literature highlighted the likelihood that a substantial number of people working are 134 unaware of their developing condition. This was thought to be partly due to that fact that delays in 135 diagnosis are particularly common for people with working age dementia [ Despite their fears beforehand, individuals with working age dementia do not report regretting having 211 knowledge of their diagnosis. They often find that diagnosis helps them make sense of their 212 experiences and make plans about how long they want to carry on working and explore what support 213 their employers can provide [13]. Early identification can also allow time for handover of knowledge and interact with an employee whom they know, or suspect, to have working-age dementia, was 218 offered in a number of articles. It included: sensitively asking employees if they have noticed they are 219 having memory or planning problems [20,33]; asking whether they have been having similar 220 problems at home, and whether these could be discussed with family members [33]; urging employees 221 to get a medical evaluation from a specialist in memory loss [33].A careful approach, expressing 222 concern for the individual employee, is recommended [20], as this can help minimise negative 223 consequences triggered by a diagnosis such as anxiety, depression and suicidal ideation [25]. Their website also provides advice for employers, recommending that they have clear policies about 238 how they can provide support. Where employees have a diagnosis of dementia, DEEP recommends 239 that employers should outline to employees the support that is available, encourage employees to be 240 aware of their symptoms and how they might affect them at work and explain the procedures that 241 need to be followed. They also note that employers need to be flexible and compassionate about The second over-arching theme identified from the literature related to the reasonable adjustments that 246 allowed people with dementia to remain in work for some period of time. Within this theme four sub-247 themes were identified: the desire to stay in work; typical adjustments; the process of making 248 adjustments; reported experiences of reasonable adjustments. 249

250
The sub-theme on the desire of people with working age dementia to stay in work was reflected in 251 several journal articles, as was the importance for employers to facilitate this. People with working 252 age dementia described the importance of remaining independent, using their skills and abilities and 253 can help employers assess specific difficulties and to decide on tasks employees can continue to do, 300 tasks they may need to approach differently, and tasks that they may need to relinquish. The potential 301 for helpful advice from occupational therapists and psychologists was also highlighted: for example, 302 in assessing other (non-task specific) demands in the workplace and the impact on other aspects of the 303 employee's mental health. The importance of regular review is noted [21]. 304

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In the UK, the Alzheimer's Society [17] encouraged employers to adopt good employment practices 306 that support people with dementia to continue to work after a diagnosis. DEEP [34] also highlights the 307 processes and practices that employers should adopt when making adjustment. These are summarised 308 in Table 5. 309

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The final sub-theme related to reasonable adjustments concerned the reported experiences of those 313 with working age dementia. The research studies reported that many people with working age 314 dementia have experiences that are far from what is advised in the guidance described above. In cases 315 reported by Chaplin & Davidson [4], none of the participants said that they were offered any 316 reasonable adjustments to their work role after diagnosis. They also reported a lack of consultation 317 and felt that there was no real will in the workplace to find a more suitable job or acknowledge their 318 remaining skills. Similarly, in another study with people with working age dementia, little assistance 319 was available to help them keep working if they so wished [23]. In this study of 61 people, all but one 320 had to give up their jobs as they were unable to fulfil their work commitments. This was for a variety 321 of reasons including the inability to retain work-related insurance post-diagnosis, being laid off from 322 more informal work contracts, as well as voluntary decisions to leave work to spend more time with 323 family. Respondents in another study reported a sense of lack of agency, feeling conspired against and 324 often being dismissed without consultation [30]. In cases where a diagnosis had yet to be made, it was 325 common for an employee to lose their job due to poor performance before an opportunity for making self-directed adaptations to manage their condition [24]. These included developing new strategies to perform tasks. These strategies were reported as helpful in work but also for non-work-329 related activities and hobbies. 330

331
The authors of one study suggest that employees working in lower paid/manual jobs are more likely 332 to experience an 'all or nothing' approach from their employers, and face quicker dismissal. In 333 contrast, those working in higher paid/non-manual and professional jobs are more likely to have more 334 control over their daily tasks and more consideration may be given to retaining their unique 335 knowledge and remaining skills [4]. The second sub-theme identified the need for information to facilitate informed decision making by 363 people with working age dementia. The need for useful and timely information relating to working 364 age dementia was highlighted in many of the studies and reports. It was also noted that information, 365 support and services were difficult to access [1,18,43]. It was suggested that employers could be an 366 important focal point for dissemination. DEEP, for example, recommend that employers should 367 ensure that employees with working age dementia know to whom to turn for support, both inside and 368 outside the organisation [34]. 369 370 Individuals diagnosed with working age dementia reported that they struggled to understand state 371 disability benefits and were unsure, for example, whether or not to remain in employment [43]. 372 Financially-focused, informational support, including information about various state benefits, was 373 noted as essential for those working at the time of diagnosis [25,26,37,38,44]. Lack of suitable 374 information can make choosing between early retirement, redundancy or state benefits difficult and 375 inappropriate choices may cause additional financial hardship [1,4,28,30,35]. Also noted was that as 376 affected employees lose or leave their jobs, caregivers may also leave work in order to care for them, 377 resulting in further loss of income [24]. Employers should be encouraged to recognize dementia as a 378 reason for early retirement so as to maintain pension rights and other benefits [31,45]. Their main themes concerned early presentation and identification in the workplace; reasonable 392 adjustments; and the provision of information both to raise awareness and allow employees with 393 working age dementia to make informed choices. The main limitation of the review is that there may 394 well be knowledge in working communities that has not been published. Since the topic of 395 employment and dementia sits across a wide span of health, social and occupational domains it is 396 possible that some omissions have been made. The aim of our review was to understand the 397 perspectives, experiences, and needs of employers rather than the work-related experience of people 398 with dementia; the latter has been the focus of previous research [4,5]. However, the literature 399 concerning how to manage people with working-age dementia remained heavily reliant on both the 400 perspectives and experiences of employees, and on best practice and advisory guides published by 401 charities and interest groups. There is very little primary research examining HR or OH practices and 402 interventions, or exploring the experiences of managers. Nevertheless, the experience of employees 403 with working-age dementia is clearly relevant and provides important insights into the management 404 practices they commonly experience, much of which they reported as negative. 405

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The literature emphasised that early identification of dementia is important both for employer and 407 employee both to minimise problems arising at work and to enable employees to continue to work 408 after diagnosis should they so wish. Early identification can also help mitigate health and safety risks 409 and allow time for handover of knowledge and responsibilities. Early identification in the workplace is challenging as employees conceal symptoms or self-manage them to reduce their impact at work. 411 Early symptoms can be varied and are manifested at work in a variety of ways: difficulty 412 remembering names, missing appointments, repetition during conversations, reduced numerical 413 ability, difficulty using logic, unexplained reductions in performance, increased agitation and 414 irritability, and symptoms of depression and anxiety. Employers are advised to interact sensitively 415 with employees suspected of having working-age dementia, expressing concern whilst supporting 416 them to access medical evaluations. The UK workforce is ageing, such that by 2020, 1:3 British workers will be over 50 years of age 444 [46,47]. It is likely that employers will need to retain older workers to access scarce skills. At the 445 same time, the incidence of dementia also increases with age, doubling every 5 years from the age of 446    arranging meetings for times when employees are likely to be at their best x simplifying routines, and allocating tasks separately instead of all at once x reducing noise and distraction x using technology (e.g. computerised diaries) to function as reminders of meetings and deadlines x moving to a less senior role and accepting a lower wage and less responsibility x having one or two colleagues as supporters x x assistance with planning for the future e.g. deciding when the time is right to leave work x identify who else in the workplace needs to know about the diagnosis. (clients as well as co-workers) x Encourage an open and honest dialogue of options to help the person stay in work x x Seek further advice to identify ways to make reasonable adjustment, e.g. OH services, local memory services x x Demonstrate they have made reasonable adjustments to enable people who develop dementia to continue to work, and reassure employees that the organisation will support them where possible x Be flexible and use the skills of the individuals involved, adjusting certain parts of the job where necessary x Make sure the person knows that their skills and experience are still valued x Carry out risk assessments and review the situation frequently with the employee x Acknowledge that supporting people may take time and resourcespeople may need practical and emotional support Be honest about adjustments that can reasonably be made, and provide information and guidance about finishing work to people with dementia and carers who are unable, or no longer wish to, continue working x x