Policy changes in Britain related to the removal of the default retirement age and the increase in state pension age will mean many people will now work beyond the age of 65. There is much debate around the advantages of this for the economy alongside the impacts and alternatives for individuals who may experience poorer health and well-being and be financially disadvantaged as a result of having to work later in life. These changes also mean that employers will have to be increasingly aware of workers developing chronic illnesses which are often associated with older age such as dementia. Although commonly related with being old, it is estimated that 42,000 people of working age (under 65) have dementia in Britain. This, coupled with the increasing numbers of people over 65 remaining in the workplace, means that it is likely that employees developing dementia while still actively working will occur more frequently.
These intersecting trends of ageing, later retirement and supporting workers who develop chronic illnesses over time are developing to create increasing challenges for unions, their members and reps. However, recent research has shown the potential for continued employment even after people are diagnosed with dementia and that some can continue working post-diagnosis for many years with the correct support but for many a lack of support can lead to a premature exit from the workplace, leading to negative consequences for them and their family. As Scotland’s workforce ages, many more adults will experience early symptoms of dementia while at work. These workers will need support from union reps: including potentially through sickness absences; performance improvement procedures; or disciplinary procedures. This article considers some of these issues and draws attention to the support available to union reps in particular. 
Dementia is an umbrella term for a range of illnesses which affect the brain. Alzheimer’s disease is the most common cause of dementia, although there are many other illnesses which cause dementia. Dementia causes a progressive loss of all cognitive functioning, affecting not only memory but communication, visuo-spatial skills, and processing. For younger people with dementia, the symptoms are often first noticed in the workplace: forgotten meetings, problems communicating in meetings, reduced performance and problems with colleagues that were not present before. For most people with dementia, they cannot pinpoint when symptoms emerged, rather there are slow changes over a period of time which gradually become more noticeable to others.
There are a number of barriers to getting a diagnosis of dementia, which can make the situation in the workplace all the more challenging. These include stigma associated with the condition, anxiety about the diagnosis process and justifiable concerns about the impact on work and home life should the diagnosis be confirmed as the condition progresses. These barriers mean that the diagnostic process can be extended, and for some can take over a year or more before a diagnosis is agreed upon.
It should be noted as well that not everyone experiencing cognitive impairment will be diagnosed with dementia. This can be a symptom of other conditions including depression and is also commonly reported in women experiencing the menopause. The key difference is that the cognitive impairment associated with these conditions is not permanent and can be reversed.
Nevertheless, it is crucial that the appropriate support is provided to workers experiencing these symptoms within the workplace, through access to informed occupational health services, unions and human resources personnel. This is not to say that employers and associated services should be able to medically diagnose dementia but that raising awareness of the symptoms and their impact in the workplace could help employers to encourage and support an employee to seek a timely diagnosis.
Dementia can be classed as a disability under the Equality Act 2010, meaning that if an employee discloses their diagnosis an employer has a duty to provide reasonable adjustments to support them to continue to work while they are able. Recent research led by the University of the West of Scotland (UWS) has confirmed that, with the correct support, people with dementia can continue to work post-diagnosis. However, there are many barriers to accessing the correct support in the workplace including: non-disclosure of diagnosis, stigma relating to the abilities of the person with dementia, and managing disputes between colleagues.
The types of reasonable adjustment required to support a person with a diagnosis of dementia to continue working will vary depending on the type of employment and the impact dementia is having on their life and work. However, examples of successful reasonable adjustments from the research carried out by UWS include: flexible working hours or home working; changes to contracted hours and job description; providing a quiet space free from distractions; ensuring the workplace as dementia considerate signage; providing all information in a written format; and supporting the use of calendars, diaries and technology (e.g. mobile phones) as memory aids.
This list is intended to be used as a guide and is not exhaustive of the adjustments which may be useful for employees with dementia. When arranging reasonable adjustments to be put in place, the most useful approach is to adopt a disability management approach with a focus on the skills and abilities that the employee has retained rather than what they can no longer do.
While continued employment post-diagnosis is possible, it will not be for everyone. There are many jobs where a diagnosis of dementia would mean that the person is no longer able to continue for health and safety reasons (e.g. HGV driver, nurse), although there may be other tasks they are still able to do within the company or organisation.
However, for many people, a diagnosis of dementia often results in them losing their employment. This is either because the employment was terminated before they got their diagnosis or the employee has been on sick leave and when the diagnosis is received the thought of returning to work is too much for the person to cope with. The majority of people with younger-onset dementia take early retirement as a result of their diagnosis. For these people, there is a need to ensure that they receive appropriate advice and support on their eligibility for benefits, pension and other sources of financial support. At present, there are frequent media reports that people with dementia are not getting this support and many are being denied benefits such as Personal Independence Payments (PIP) after undergoing intensive and invasive capability assessments. A younger person with dementia is disadvantaged in these situations as they have often developed a range of coping strategies and because of the absence of other age-related problems often appear visually ‘well’.
To help union reps, members and their families, we are delighted that the findings of our research have informed the guide for union reps developed by Age Scotland and the STUC (see below). This guide from the STUC Disabled Workers’ Committee aims to help raise reps’ awareness of dementia as a workplace issue including: recognising early symptoms of dementia; how to create dementia friendly workplaces; how workers with early onset dementia can be supported in work; how carers for family members or friends with dementia can be supported by employers; and where reps can access advice and support.
The guide is not designed to make reps experts in the condition – rather, it aims to help them support members affected by dementia, either living with it directly, or as a carer for someone who has dementia. It recognises reps provide valuable support to disabled members facing difficulties in the workplace as a result of physical or mental impairment. On occasion an undiagnosed condition can be uncovered as a member is supported through sickness absence, performance improvement or disciplinary procedures. The guide suggests areas to look at with regard to early stage dementia adjustments. These are:
• Ensuring policies don’t unfairly penalise someone who needs to take frequent short absences because of their condition or a caring responsibility
• Allowing more flexible working and / or reduced hours
• Changes to practices in the workplace to ensure they are inclusive of workers living with early stage dementia, for example communication to be made simpler and clearer
• Re-allocation of some duties and / or reduction in some targets
• Reducing distractions, for example noise
• Changes to minimise risks associated with difficulties judging depth and distance, for example better lighting and improved flooring
• More and clearer signage
• A buddying system and mentoring or counselling support
• A supportive quality checking system with checklists, reminders, calendars
Further studies and development of support for workers, reps, families and employers is continuing at UWS and with colleagues at Edinburgh Napier University, especially around ‘Employer responses to dementia’. We hope to report on this research and the practical advice and support in future issues of the Scottish Left Review.
Dr Louise Ritchie is a Lecturer in Later Life and Dementia in the Alzheimer Scotland Centre for Policy and Practice, Institute of Healthcare Policy and Practice at UWS and Mike Danson is Professor of Enterprise Policy at Heriot-Watt University .
Dementia in the Workplace – A Guide for Trade Union Reps available at http://www.stuc.org.uk/files/Dementia/Dementia%20in%20the%20Workplace%20(Final).pdf
