Recent figures from the Alzheimer’s Society suggest that there are around 38,000 people under the age of 65 with dementia in the UK. With the recent increase in retirement age, many people will be working beyond 65 meaning that more people may be developing dementia while still in employment.
Little is known about the experiences of people who develop dementia whilst in employment. We are currently working on a two-year UK wide research project funded by the Alzheimer Society to try to understand more about the experiences of people who develop dementia whilst still at work and to find out if employment post diagnosis is possible.
So far we have carried out 13 case studies of people with dementia who are still in employment or were in employment at the time of their diagnosis. Case studies involved interviews with the person with dementia, a family member and a workplace representative, for example a line manager, colleague or someone from human resources. The research is ongoing, but I’d like to share five of emerging findings from the study with you in the rest of this blog.
Five emerging research findings:
|1.||People with dementia CAN and DO continue to work post diagnosis|
|2.||A good SUPPORT NETWORK is important|
|3.||Dementia AWARENESS is essential|
|4.||EMPLOYERS NEED SUPPORT as well|
|5.||In some jobs continued employment may not be possible|
- People with dementia CAN and DO continue to work post diagnosis
We were pleased to find that of our 13 case studies, 8 people continued to work post diagnosis. Of these 8, some have worked for a number of years post diagnosis (the longest being 9 years) while others were more recently diagnosed and looking to extend their working lives. There were a number of different factors which influenced whether people were able to continue work for example, the type of employment, length of time to receive a diagnosis and types of symptoms experienced.
- A good SUPPORT NETWORK is important
Regardless of whether the person remained in work post diagnosis or left work, a strong support network was important to support continued employment.Support networks typically included family members, work mates and/or line managers, health professionals and in some cases occupational health and human resource professionals.These support networks worked together to provide information and make adjustments to enable the person with dementia to continue work. Some examples of this were; altering working hours to ensure the person with dementia was not travelling to work in the dark, flexible working arrangements and giving written information about tasks they are required to do.
- Dementia AWARENESS is essential
In a number of our case studies, workplaces held dementia awareness sessions for employees. The format of this varied; in some cases the organisation provided the session as part of their organisational training while others provided it as a reaction to the participant disclosing their diagnosis or in two cases, a way for the person with dementia to disclose their diagnosis to their workmates. No matter the method of delivery, the workplace representatives reported that they found the session very useful and it helped them to understand the change in their colleague and how to support them.
- EMPLOYERS NEED SUPPORT as well
For all the employers interviewed as part of the case studies, it was the first time that their organisation had experience of an employee developing dementia. All employers wanted to do their best for the employee and support them to continue work if possible. However, many employers felt ill-prepared to make appropriate adjustments and unsure where to get further support. Having a colleague diagnosed with dementia also had an emotional impact on the wider workforce.
- In some jobs continued employment may not be possible
For some of our participants, continued employment was not possible due to the type of job they did. The majority of these involved jobs where there could be an impact on the health, safety or wellbeing of the person, the workforce or the public. Examples of this were a judge who was given early retirement and a nurse who realised she was not safe administering medicines so resigned from her job. When leaving work the experiences of our participants varied greatly. Some made the decision to leave themselves, others worked with their employers to come to the decision and in some situations the employers made the decision. The terms on which the person left had an impact on pensions, benefits and wellbeing.
What the study has shown us so far is that people are experiencing the symptoms of dementia in employment and it has a significant impact on their lives both financially and psychologically whether they choose to stay in work or leave either by their own choice or because continued employment is not seen to be possible.
Get in touch
If you are interested in finding out more about the study, participating in the study or know someone who may like to participate please get in touch through the online form or by emailing me email@example.com.
The Dementia Engagement and Empowerment Project (DEEP) have published a guide for employers who would like to be more dementia friendly – you can view it here.
We would welcome your comments and views on the five emerging themes in this blog and your views on people living with dementia remaining in the work place.
Dr Louise Ritchie
Research Fellow, UWS
I am a currently working as a Research Fellow at the University of the West of Scotland on a project focusing on dementia in the workplace. The aim of the project is to examine the experiences of those who develop dementia whilst still in employment, examining the potential for continued employment.