Recent figures suggest there are around 800,000 people in the UK with dementia. People usually associate the condition with later life, but around 17,000 of sufferers are under the age of 65. Coupled with recent changes to the state pension age and the abolition of the default retirement age, it looks likely that there will be larger numbers of people with dementia in employment in the coming years.
The UK government’s recent focus on encouraging employers to support people with disabilities to find and stay in work in line with the provisions of the Equality Act 2010 has been accompanied by a shift in attitudes towards disability and employment. This relates directly to dementia, which is listed as a disability within the terms of the Act. Nevertheless the focus is very much on ability rather than disability and supporting people to retain employment.
At the University of the West of Scotland, we have been carrying out research into the work-related experiences of people who have been diagnosed with dementia. Our study has focused on the perspectives of individuals, family, work colleagues, managers and employers to better understand the challenges and what can and should be done to help. It will be next August before we wrap up, but we have been struck in our first few months’ research by the range of experiences that employees with dementia have had.
The gradual onset of the illness means that there may be subtle changes in a person’s behaviour and performance in the workplace which in the first instance may not be recognised as dementia. These may include memory problems, personality changes; and difficulty learning new materials and communicating. The experience of dementia is unique, and not all people will experience the typical memory problems as an initial symptom.
From an employers’ perspective it is important that these initial symptoms are identified and appropriate support offered to the employee. This is not suggesting that employers have to diagnose dementia; but it is helpful if they are aware of the possibility and able to appropriately address any changes in behaviour and offer support and signposting for medical advice.
Among the many advantages in getting an early diagnosis is the prospect of being able to continue in employment. Having said that, diagnosis can still take a long time. People can struggle at work for months or years, often leaving their jobs before they are diagnosed. If the employer is aware, it can help to improve this process and allow them to implement informed adjustments for the person during the interim period.
Once a sufferer has been diagnosed, the Equality Act 2010 stipulates that the employer should carry out an assessment and put reasonable adjustments in place to help the employee to keep working there wherever possible. They should carry out an assessment based on the employee’s job description and take a view on how much the employee can still carry out and which parts will need extra support.
The types of adjustments will vary greatly depending on the person’s role and how far their dementia has progressed. It can be simple things like using a diary or a digital recorder for meetings, changing shift patterns or reducing hours. It might mean an informal arrangement such as having a “work buddy”. In other instances, it will mean coming up with an alternative role for the person within the workplace. Whatever the case, it is important that colleagues are aware that the person has been diagnosed.
It is not always possible to continue working once early-stage dementia sets in. Some roles demand more precision, perhaps for health and safety reasons, than the diagnosed person retains. All the same, people often can, and do, continue where it is viable. Among our case studies, we have a caretaker and a telephone engineer who have both worked for a number of years after being diagnosed. We also have a joiner who didn’t work for six years but has recently started working again as a handyman.
There are a number of outside agencies where employers can access support. These include Jobcentre Plus, which will provide information relating to relevant schemes including Access to Work, and a range of vocational rehabilitation providers. The Alzheimer’s Society and Alzheimer Scotland can also provide dementia-specific information and training.
Awareness is key
Awareness training sessions have been found to be vital in helping people to continue employment after diagnosis, since they make colleagues and line managers aware of the symptoms and the difficulties sufferers may face. Dementia awareness sessions in workplaces where there are no employees with dementia are also becoming common.
Even though our research is far from complete, we have so far found seen a wide variety of responses from employers. This has ranged from employers going out of their way to help the person continue, to those who have immediately made the employee redundant. In all cases, the indications are that workplaces who are well aware of the issues are the most adept at handling them.
The university recently held dementia awareness sessions across all four of its campuses as part of its commitment to become the first dementia-friendly university in Scotland. The action plan involves training managers, lecturers and support staff; updating human resources and occupational health policy and changing each campus to create a welcoming, accessible and enabling environment for people with dementia.
More generally, it is important that we address the issues around dementia in the workplace to increase the chances of sufferers staying in employment. The more that employers and employees are aware of the possibility and the signs of dementia, the more it will support sufferers in future.