Supporting employees affected by dementia and their carers

Your employees’ rights

Dementia is classified in law as a disability, so it is essential to understand your employee’s rights.

How the Equality Act 2010 protects your employee

Disability is one of nine ‘protected characteristics’ under the Equality Act 2010. This means people with a disability – including dementia – are legally protected from discrimination and have certain rights at work:

The right to ‘reasonable adjustments’

These are adaptations to the person’s role, work schedule or working environment to allow them to do their work. As an employer, you have the duty to make these adjustments.

The right to protection from discrimination

It is unlawful to discriminate against employees directly or indirectly on the basis of disability. This means you cannot treat an employee less favourably because they have dementia.

The right to request flexible working

From the first day of their employment, your employee has the right to request flexible working under the Employment Relations (Flexible Working) Act 2023. This could include part-time working, flexi-time, job sharing, or working from home. This right applies to all employees – not just those with disabilities.

You have two months to respond to the request. You can reject it if there is a genuine business case against it, but you must tell your employee the reasons, and they may be able to complain to an employment tribunal if they believe they are not reasonable.
The rules are slightly different in Northern Ireland, eg employees do not have the statutory right to request flexible working in the first 26 weeks of working for an employer.

Your employee is protected against discrimination and unfair dismissal

There are five different categories of workplace discrimination that employees must be protected from:

Direct discrimination — putting the person at a disadvantage because of their disability. For example: the person is selected for a promotion. Before taking up the new position, they tell their employer that they have been diagnosed with dementia. The employer revokes the job offer.

Indirect discrimination — putting an employee at a disadvantage because of a rule or policy that applies to all staff members but particularly affects them because of their disability. For example: an absence policy is introduced where disciplinary action results if employees take more days off than are allowed in the policy. This discriminates against the person with dementia (and those with other disabilities or health conditions) if they need to attend frequent medical appointments.

Failure to make reasonable adjustments — refusal to make reasonable adjustments to allow the person with dementia to work, with no business case for doing so. For example: the person with dementia requests to work from home one day a week. The employer refuses because they prefer employees to work in the office, even though the person’s job can be done efficiently from home.

Harassment — unpleasant or hostile behaviour towards the person with dementia – from the employer themselves or other colleagues. For example: the person with dementia sometimes struggles to find words. Their colleagues start to make fun of them by mimicking their hesitant speech.

Victimisation — treating someone unfairly because they have made a complaint or a claim of discrimination at work. For example: the person with dementia has made a complaint to HR about their manager refusing to implement a reasonable adjustment. Shortly after, they are put on an unjustified performance improvement plan.

It may be lawful to dismiss a person with dementia on capability grounds if you can prove:

• they cannot do their job even after all reasonable adjustments have been made and all possible support put in place
• there are no other suitable roles that they could move into
• there is no other way their work can be done, for example by passing responsibility for certain elements to other team members
• the decision to terminate their employment is reasonable, when everything has been considered

We recommend seeking specialist advice before beginning any performance management plan, for example from your HR Team, Acas or an employment lawyer. Our Dementia at Work Team can also offer guidance – please contact us at dementia.work@dementiauk.org

What reasonable adjustments are suitable for an employee with dementia?

Reasonable adjustments will be specific to the requirements of the person with dementia. They will need to be reviewed regularly to ensure that they are still meeting their needs. You may need to change the adjustments or introduce new ones as the person’s condition progresses.

What is ‘reasonable’ depends on each situation. If possible, it is a good idea to arrange an occupational health assessment to devise an action plan, with the full involvement of the person with dementia. This should include an evaluation of their current role, taking into consideration how dementia affects their ability to do their job. Some possible reasonable adjustments an occupational health team may suggest include:

• allocating tasks individually, rather than all at once
• giving advice on simplifying routines
• providing a quieter workspace with fewer distractions
• offering regular rest breaks during the day
• making changes to their working environment, eg allowing them to work in a step-free area if they have problems with balance/mobility
• removing elements of their role that are particularly challenging or present health and safety risks, eg working at height
• setting up a buddy scheme and regular support sessions
• a move to a role with less responsibility or that better suits their capabilities (if needed or requested)
• providing emotional support/counselling

With each suggested adjustment, you as an employer should consider carefully if the adjustment:

• will remove or reduce the disadvantage
• is practical to make
• is affordable
• could harm the health and safety of others

An employer does not have to change the basic nature of the job. For example, if someone working in a call centre asks for a job that does not involve taking calls, this might not be reasonable if there is no other job to give them.

Flexible working

Providing flexible working hours can make a significant difference to a person with dementia, allowing them to manage their condition more effectively.

A reduction in hours (if needed or requested) and enabling supported homeworking are examples of reasonable adjustments that may be appropriate.

Assistive technology and memory aids

Making small adjustments to your employee’s physical working environment, such as clear signage or the use of memory aids, could also help them manage their day-to-day work more easily and efficiently.

Reasonable adjustments might also include providing assistive equipment eg alerts, reminders, voice recognition software.

Changes in responsibilities

An employee with dementia may still be able to work, but may struggle with certain tasks more than others. Therefore, finding different tasks and responsibilities for them that they can manage more easily can help them stay in work longer.

“Over time, as Yvonne’s dementia progressed, her employer made gradual adjustments to her role so she could continue to work. They changed her working hours, so she didn’t have to do shifts early in the morning, when she often struggled. They reduced the number of aisles she worked in, so it was less confusing, then reduced her hours overall. By the time Yvonne stopped working, she was working purely at the back-end of the store, cleaning the crates shopping was packed in – a job that suited her perfectly, as she was so meticulous.”

– Trevor, whose wife Yvonne lives with young onset dementia

What to do if an employee decides to leave as a result of developing dementia

Deciding when to stop working due to dementia is a personal decision that will be influenced by how the person is affected by the condition, the nature of their job, and their personal circumstances.

There is no definitive time to stop working, but if the person is finding it increasingly difficult to manage tasks or no further reasonable adjustments can be made to help them keep working, it could be time for them to consider leaving – either to move to a new job that they feel more able to cope with, or to retire.

Five ways to support an employee who chooses to leave their job

1. Find out their reasons: talk to the employee about why they want to leave work. Is it their personal choice, or do they feel there is pressure on them to leave? Assure them of your support as they assess whether it is right to leave work or whether more could be done to enable them to continue.
2. Reflect on their role: in some cases, it may be possible to implement new reasonable adjustments to support the person to remain in work for longer, if they choose. Always involve the person with dementia, and, if they like, a family member or other trusted person, and a union rep if they have one. An occupational health assessment is useful at this point, if possible. Ensure the employee has support to explore their options. While some may choose to retire, it may be possible for others to find a new job that better suits their capabilities, allowing them to continue in employment for longer.
3. Signpost them to financial support: for many people, leaving their job can put them under financial strain, whether because they are moving to a new job that may be less well paid or retiring earlier than expected. If the person is retiring and has a workplace pension, they may need support from you, your HR Team or their pension provider on how to access their pension on the grounds of ill health retirement. If you offer an Employee Assistance Programme, it may provide access to a financial adviser who could help the person understand their options, including benefits entitlements. If not, you could provide details of organisations that could help, like Citizens Advice.
4. Help them through the correct processes: make sure the person knows what their contract says about leaving work and help them make the necessary arrangements.
5. Offer your support: leaving work can be a difficult transition, so the employee is likely to need support. You may be able to offer this yourself, or through your Occupational Health Team or Employee Assistance Programme, if available. Involve the person’s family if they would like. Find out if they would prefer to tell their colleagues themselves, or if they would like you to do it – and would like a big farewell celebration or would prefer to leave quietly.

If you believe the employee is reaching a point where they need to leave work, it is essential to handle it sensitively. Do not put your employee under pressure to leave work, as this could be considered discrimination. Likewise, you cannot make the person redundant purely on disability grounds.

If you need to broach the subject of your employee needing to leave work:

• ensure you understand your obligations and their rights under the Equality Act 2010
• talk to them openly about your concerns, making sure that you choose a time and location that suits them, and that they have advance notice of what you would like to discuss
• give them the opportunity to have an advocate present – this could be a friend or family member, trusted colleague or union rep
• with their permission, consider asking their GP for a medical report – this will help you build a clearer picture of how their condition affects them
• work together, with the Occupational Health Team if you have one, to discuss whether any further reasonable adjustments could be put in place, and if so, allow enough time to trial them and see if they help
• document all discussions and decisions and arrange a time to review any actions that you agree to take

What to do if you suspect an employee has dementia but has not told you

It can be difficult to tell if an employee is showing signs of dementia or if there is another cause, but it is important to be aware that it may be an issue.

People with possible dementia symptoms may not recognise or acknowledge their difficulties. They may lack insight or be in denial about their symptoms. They may have developed coping strategies to deal with specific problems or have colleagues who are prepared to cover for them. Or they may be aware of symptoms but are trying to conceal them. Understand also that the employee may be worried about their future and reluctant to talk about their symptoms or seek support.

If you decide to speak with an employee who you believe is showing possible signs of dementia, keep in mind that many other common health conditions can cause symptoms that can look like dementia. If you suspect an employee has dementia and has not disclosed their diagnosis, you might want to consider encouraging an open conversation. Bear in mind that they may not feel comfortable talking to their immediate manager – if you have an HR Team, you may want to suggest they can talk to them instead.

Usually, an employee does not legally have to disclose a diagnosis of dementia. However, there are some jobs where disclosure is a legal requirement. These include:

• the armed forces
• healthcare professions
• jobs that involve driving
• roles that involve working with heavy machinery

The person’s employment contract should state whether they are obliged to tell you or the HR Team about their diagnosis.

Supporting employees who are carers

Around 700,000 people in the UK care for someone living with dementia. For working carers, support from their employer can make a big difference as they balance the dual responsibilities of working and caring.

“I work for a fantastic company – the management in particular have been so supportive, which has enabled me to keep working full-time while also caring for Helen, with flexibility as well.”
– Glenn, whose wife Helen lives with young onset dementia

Understanding the impact of caring on work performance

If you have an employee who is caring for someone with dementia, be aware that their caring responsibilities can have an impact on their physical and mental health. They may require more understanding and empathy if this affects their work performance. For example, they may be tired from being up in the night to care for the person with dementia, and therefore make a mistake in their work. Rather than a taking harsh approach, speak to your employee about their situation, how it is impacting them and how you can help.

Bear in mind that people who care for someone with dementia do not always identify themselves as carers, so they may not reach out for support. You may need to take the initiative to reach out with support if you know that your employee has a relative or close friend with dementia who they look after.

Five ways to support an employee who cares for a person with dementia

Here are some tips to help you support an employee with caring responsibilities:

1. Allow flexibility where possible: for example, staff may need time off to take the person they care for to appointments, or to work flexible hours around their key caring duties.
2. Join the ‘Carer Passport’ scheme: a Carer Passport is a formal record of an employee’s status as a carer and what their employer will do in response. It allows the carer to outline their caring commitments, supports employers in having conversations about balancing the employee’s needs with the organisation’s needs and communicates any existing workplace support for carers. You can find more information on Carer Passports, including guides and templates, on the Carers UK website.
3. Highlight your support offer: this could include informal support from you and the employee’s colleagues, or formal support from an HR Team, Carers’ Network or Employee Assistance Programme. You could also signpost them to organisations like Citizens Advice or Acas for employment issues, and to Dementia UK’s specialist Admiral Nurses for emotional and practical support.
4. Maintain open conversations: because dementia is a progressive condition, your employee’s needs as a carer are likely to change over time. Regular review meetings will help you check in on how they are managing and see if current accommodations need revising.
5. Recognise their own needs: being a carer can have a huge impact on someone’s physical and mental health and finances. It is important to recognise how this affects their working life and respond with empathy and understanding.

Legal rights of carers

Under the Equality Act 2010, people are protected against discrimination that results from someone they are associated with. This means discriminating against an employee because they are caring for someone with dementia is unlawful.

Time off for dependants

Employees have the right to take a reasonable amount of time off work to deal with emergencies involving dependants, which could include the person they care for. There is no set amount of time they can take off, and no limit to how many episodes of time off they can take. However, as an employer you may raise concerns if you think it is affecting their work.

Legally, employers do not have to pay an employee for time off for dependants, but some choose to. The employee should refer to the organisation’s policy around time off for dependants.

Right to request flexible working

Flexible working may be especially helpful for employees with caring responsibilities. Like all employees, carers have the right to request flexible working and are able to appeal a decision through an employment tribunal.

How Dementia UK can support you

Our Dementia at Work Programme provides organisations with a range of services to increase their understanding and awareness of dementia and improve support for employees and customers affected by the condition. To find out how we can support you, for example with information, masterclasses and bespoke training, please contact dementia.work@dementiauk.org.