The medical community’s growing ability to diagnose early-onset dementia today has brought the pressing issue of the need to navigate workplace dementia to light. The global workforce is ageing rapidly, and the number of people below the age of 65 with a dementia diagnosis is growing. The question is: are businesses prepared to address the challenges of dementia in the workplace?
The need to have a conversation
According to Alzheimer Canada, “an increasingly ageing workforce is primarily due to the lack of mandatory retirement age, poor financial planning, global economic uncertainty, and a longer life expectancy.” However, higher education levels, lower mortality rates, better overall health, and a shift from manufacturing to service economies have also contributed to employees staying longer in the workforce.
Economies are increasingly rejecting conventional beliefs about retirement at the age of 65, and businesses continue to hire an experienced demographic to facilitate their development. However, doing so comes with its challenges. Research shows that dementia affects approximately 10 out of every 100 people aged over 65, with the likelihood of a diagnosis doubling every five years (after 65). Further, dementia is not a cognitive disease that affects exclusively those over 65. With the constant improvement of medical innovations, new findings on “working-age” or “young-onset” dementia show how the disease is affecting people who are of prime working age (30-60). According to Alzheimer’s Society, there are currently 850,000 people living with dementia in the UK and 45,000 are under the age of 65. In the US, about half a million people are living with young-onset dementia. It is possible that the numbers are even higher as symptoms may often be misattributed to stress and depression.
Addressing Dementia in the Workplace
It is not easy to navigate the conversation around dementia in the workplace. As dementia is often associated with the elderly, a younger individual with a dementia diagnosis may feel stigmatised. Inappropriate jokes about ageism such as “having a senior moment” and mental illness can further push a person into isolation.
A dementia diagnosis can bring unprecedented challenges in the lives of employees. Confusion, disorientation, forgetfulness begin to interfere with daily activities and can cause the individual to feel frustrated and incompetent. Things can be further complicated by the fact that the individual may not understand or remember they have the disease.
It is then up to the employer to accommodate the changing needs of employees with a dementia diagnosis and make the workplace safe and inclusive. However, it can be difficult to empathise with the needs of people living with dementia without understanding the gravity of the challenges faced by them. Consequently, employers may not be able to provide adequate support. A study published in the Occupational Medicine journal finds that employees with an early-onset dementia diagnosis lack support from their workplace. They feel the need to conceal or self-manage their symptoms, and fear the reactions from their colleagues and employers.
Given the rising numbers of people with a dementia diagnosis, it is imperative for employers to be familiar with the guidelines for effectively managing dementia in the workplace. Firstly, employers must be familiar with the risks and symptoms of dementia – which differ depending on the type of dementia. Secondly, they must strive to make the workplace a safe and accepting environment. Finally, they must be aware of the legal rights and regulations which protect the employee from unfair work practices.
Though dementia is overwhelmingly associated with memory loss, it is also known to cause changes in behaviour, personality, and mood. It is a group of brain disorders that affect one’s ability to learn, reason, make judgments, communicate, and carry out daily activities. One study of people with young-onset dementia (Trutz, 2008) reported aggression in 50% of the participants, with many employees risking their jobs. Other reported behaviours were a decline in adjusting to new tasks, multiple physical health complaints, and a change in attitude towards performance, for example, from a perfectionist approach to a bare-minimum approach.
While dementia is not a curable disease, several studies (such as Torre 2016, Swaminathan et al. 2014, Cotman 2010,) point towards the effectiveness of preventive strategies. Miia Kivipelto’s worldwide FINGER study showed that intervention through “nutritional guidance, physical exercise, cognitive training and social activities, and management of vascular risk factor” is effective in delaying cognitive impairment and disability. According to the Journal of the American Medical Association, important lifestyle factors that may lower a person’s risk for dementia include:
- Maintaining a healthy weight
- Managing high blood pressure and diabetes
- Treating depression
- Not smoking
- Being physically active
Creating a safe environment
There are certain steps that employers can take to create a better working environment for people living with dementia. For example, the Alzheimer’s and Dementia Alliance of Wisconsin’s guide suggests, that when an employee with dementia:
“Has problems with acquiring, storing and recalling information”
An employer can “use..memory aids such as reminder notes, calendars, to do lists, and electronic memory aids such as electronic calendars to provide reminders to the worker, recording devices and other assistive technology.”
“Begins to have difficulty learning new things”
An employer may
- Provide simple written instructions for the worker and offer increased or additional instruction.
- Use the employee’s over-learned and over-remembered skills.
- Use the employee’s long term memories-past experiences, habits and knowledge to aid functioning.
- Routine and structure will also help the employee with young onset dementia function at their highest possible level
Alzheimer’s Society UK’s guide also suggests being mindful of stigmatising language used in the workplace such as “demented” or “dementia sufferer”, engaging with the staff to understand the experience of living with dementia, staying in touch with the person’s GP, and making reasonable adjustments in project deadlines and working pace to best support the individual.
Knowing the Legal Rights of the Individual
Knowing the legal rights of an employee living with dementia can make it easier for the employer to assess the situation and take the right measures, without violating the individual’s rights.
According to Alzheimer’s Society UK, “The Equality Act (2010) requires employers to avoid discrimination and make reasonable adjustments to ensure people with dementia are not disadvantaged in the workplace. Employers are also obliged to consider requests for flexible working from carers under the Flexible Working Regulations (2006).” Since dementia is a protected disability under this act, the employer’s healthcare benefits can play a key role in supporting affected staff.
While accommodations such as those listed above are important for the organisation’s development, in the long run, the first step towards creating an inclusive work environment – i.e the act of sharing a diagnosis – is often the most difficult step. When an employee is ready to inform their colleagues about their diagnosis, “… it is important that staff are well informed and willing to help and support them. This will create the right environment for the employee with dementia to work to the best of their abilities.
Lastly, making sure that employees have a space to communicate, are aware of occupational health services and EAPs (employee assistance programme), are all important steps in being the first port of call as a manager. Ultimately, however, what’s most important in dementia care in the workplace is that the environment offers openness to talk about any difficulties one may be experiencing. As Karishma Chandaria, dementia friendly communities programme manager at Alzheimer’s Society said, “there is still a lot of fear and stigma around dementia, and if there is still fear about telling friends and family, there is going to be even more fear about telling an employer.”
Thus it is up to us as employers and colleagues that people with a dementia diagnosis can continue to enjoy their time at the office without the fear of stigmatisation, prejudice, and discrimination.