Earlier diagnostics could promote longer careers. Legislation, too, offers tools for accommodating work to the needs of people with dementia.
It is estimated that there are around 7,000 people in Finland whose dementia started while they were still active in working life. The majority will retire after getting their diagnosis, but it would be possible to prolong the career of some by making different working time arrangements and adjustments to the job description.
“However, it is important to respect the autonomy of employees diagnosed with dementia,” University Lecturer Anna Mäki-Petäjä-Leinonen says.
Mäki-Petäjä-Leinonen is the leader of a sub-consortium in the international MCI@work project, which focuses on specific issues affecting working-age people with mild cognitive impairment or dementia. Not much research into the topic has been carried out in Finland or globally, although the number of working-age people diagnosed with dementia is expected to grow. In addition to the international MCI@work project, researchers at UEF are currently also exploring issues affecting working-age people living with dementia in the Working Life and Memory Impairment project.
“Our goal is to ensure that people diagnosed with dementia while they are still working can retire in a dignified manner. It is important to acknowledge them as individuals and to support their participation.”
It is important to acknowledge people with dementia as individuals and to support their participation.
Current legislation supports the work of people diagnosed with dementia
In Finland, the country’s existing labour legislation offers several tools, e.g., for prolonging the careers of people with dementia. For instance, it is possible to make adjustments to the job description and work assignments, and to offer tools that support the employee’s coping.
“However, it is important to remember that all forms of dementia are different and have a different pace of progressing. In addition, the size of the company and the role the person is working in also affect the employer's possibilities to make adjustments to the job description. Other employees and occupational safety, as well as the safety of customers, also need to be taken into consideration,” Associate Professor Marjo Ylhäinen says.
Small business owners and so-called light entrepreneurs also constitute a specific group from the viewpoint of legislation.
“Their position is difficult because they have to make the required adjustments to their own work independently. This can be tricky if our service systems don’t support it.”
In other words, legislation provides tools for prolonging careers, but workplaces aren’t necessarily aware of these.
“Awareness of dementia should be increased, and the related stigma reduced. Dementia is not the end of the world and it should be seen as any other disease.”
Dementia is not the end of the world.
There is a lot to improve in the availability of services
According to the researchers, early diagnosis of dementia plays a key role when it comes to prolonging careers. Often, working-age people’s problems with memory are linked to work-related stress or seen as memory issues typically occurring in workplaces – after all, who hasn’t, at one time or another, forgotten a meeting or to call a client?
“Real memory issues can get lost behind the load of work and possibly delay the diagnosis,” Mäki-Petäjä-Leinonen points out.
The kind of guidance and counselling given to an employee after his or her diagnosis plays a key role. There are indications that the chain of care and services in Finland doesn’t treat everyone equally and that there are gaps in the system. Often indeed, everything boils down to the newly diagnosed individual’s own activeness.
“Getting a diagnosis is tough, and it can take up to a couple of years before the person starts to seek peer support from, e.g., a patient organisation. In this kind of a situation, the activeness of relatives and friends plays an important role.”
It is important to weigh different options and to aim at mutual understanding.
Employers don’t know enough about dementia
The researchers have collected various data sets from people who are undergoing memory tests and who have received their dementia diagnosis while still working. In addition, they have interviewed professionals working with people with dementia and conducted a survey among experts working in patient organisations.
The preliminary results suggest that for instance supervisors don’t have enough knowledge and understanding of dementia, or of the tools that could be used to support the work of employees diagnosed with dementia.
“When a working-age person is diagnosed with dementia, his or her possible remaining in working life or retirement should be given thorough consideration, and the employee’s opinions should be heard. It is important to be flexible, talk about the situation openly, weigh different options and aim at mutual understanding,” Postdoctoral Researcher Mervi Issakainen says.
Some wish to continue working. For others, going into retirement is a relief.
“Going into retirement is a more natural alternative for those already nearing their retirement age. For people still in their 50s, it’s a harder decision. It is important for the employee to have say in the situation, no matter what the final outcome is.”
Photo: Working-age people diagnosed with dementia often retire after getting their diagnosis. Employers are often unaware of the tools available to support their remaining in working life.