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Employment and dementia

1. Summary

As many as 18% of people diagnosed with dementia under the age of 65 continue to work after a diagnosis of dementia. 27% of carers of people with dementia also continue to work.  As numbers of people with dementia rise, this will mean that there are likely to be increasing number of carers and people with dementia in the workforce. This has been recognised by employers of which 89% believe that dementia will become an increasingly bigger issue for their organisation and their staff (Employers for Carers, 2014).

Both people with dementia and carers can face challenges in continuing to work after a diagnosis of dementia. Employers must be prepared to support employees who are diagnosed with dementia or who are a carer for someone with dementia. This includes being aware of the legal protection that protects people affected by dementia from discrimination and the need to make reasonable adjustments to ensure that they are not disadvantaged in their workplace. However wider changes are also needed to enable people with dementia and their carers to continue working. These include improvements in diagnosis rates, access to support and raising awareness of dementia and its symptoms.

Dementia is a progressive condition and over time it will increasingly impair a persons' ability to work. As this happens, individuals will need support and information from their employers about finishing work, including discussion of retirement options and access to financial advice. Similarly, support will be needed for those who decide they no longer want to work following a diagnosis of dementia, or for carers of people with dementia who decide to give up work to care.

2. Background

There are 800,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2021. Dementia can affect people of any age, but it is more common in older people so many people have already retired when they are diagnosed with dementia. At least 17,000 people in the UK are living with early onset dementia that develops before the age of 65 and they may still be working when they are diagnosed. Despite the physical and mental impact of dementia many people with dementia are able to continue working, particularly in the early stages of their condition, and would choose to do so. Many people will have financial commitments, such as mortgages, or dependent children, so will need to stay in paid employment for as long as they are able.

Unpaid carers provide a major part of the support to people with dementia. There are estimated to be 670,000 people in the UK acting as the primary carers for people with dementia (Alzheimer's Society, 2012). Many carers will also continue to work, although some may give up work or take early retirement, either through choice or necessity. For some carers it is necessary to continue working in order to meet the extra costs associated with providing care to someone who has dementia, as well as meeting existing financial commitments.

Disability law and legal protection

The Equality Act 2010 (England and Wales) protects anyone who has a disability, including people with dementia. Under the Equality Act employers must make reasonable adjustments for employees with a disability so that they are not disadvantaged at work. The Equality Act covers all aspects of employment, including the recruitment process, terms, conditions and benefits, and treatment compared to other workers, such as dismissal, harassment and victimisation. The Act also protects people who experience discrimination because they are associated with someone who has a disability, such as their carer. Carers have the right to request flexible working, and the right to request time off to look after dependents in an emergency. Alzheimer's Society welcomed the Equality Act, but we are concerned that carers and people with dementia are not aware of their rights. There needs to be a concerted effort to raise awareness of the Equality Act, and its implications for both employers and employees.

3. People with dementia and employment

3.1 The number of people with dementia who are in work

Only 3% of 1,432 carer respondents to an Alzheimer's Society survey in 2010 said the person with dementia had worked in a full time or part time job since developing their condition (Alzheimer's Society, 2010). However, 91% of the responses said that the person with dementia was over the age of 65, so were likely to have retired.

Where the person with dementia was of a younger age, they were more likely to have worked:

  • Of the 110 responses where the person with dementia was aged 41-64, 18% had worked full or part time after their diagnosis
  • Of the 109 responses where the person with dementia was aged 65-69, 10% had worked full or part time after their diagnosis.

This suggests that of those diagnosed with dementia before the age of 65, a significant proportion are likely to continue to work for some period of time. As the workforce ages, the retirement age increases and the numbers of people with dementia increase, there are likely to be increasing numbers of both people with dementia and carers in the workplace. Alzheimer's Society supports phasing out the retirement age, but the resulting increase in the number of people developing dementia whilst employed means that employers must consider how to address the needs of people with dementia in the workplace.

3.2 Ability to work and reasonable adjustments

People with dementia can continue to work, particularly in the early stages of their condition. Employers must be aware of their duties to their employees and how they can support people with dementia. Job centres and careers advisors must also be equipped to support people with dementia to find work or access out-of-work benefits.

The symptoms of dementia can increasingly affect a person's ability to work as their condition progresses. People who access Alzheimer's Society's services have described getting lost when travelling for work, not remembering the details of instructions or tasks they have been given, forgetting meetings or being unable to complete a routine task. The Equality Act requires employers to make reasonable adjustments for people with disabilities and Alzheimer's Society calls for full implementation of the Act. There are ways that employers can make adjustments to support an employee diagnosed with dementia, for example, by reallocating a task to another employee, or moving their desk to a quieter area. There should be a discussion of a variety of options to support the person to stay in work, such as a shift in responsibilities or flexible working arrangements. Where a reasonable adjustment cannot be easily identified or where specialist advice or assessment is needed, employers should seek further advice. Employers must not use a diagnosis of dementia to force someone to leave work.

Eventually a person's dementia will progress to a point where it is no longer possible for them to continue to work. Anticipating future changes will be a concern for both the person with dementia and their employer. When it becomes clear that an individual is no longer able to fulfil their role there needs to be open and honest discussions about this, support to make decisions about leaving employment, and access to pensions and benefits advice.

3.3 Diagnosis

Early assessment and diagnosis of dementia is key to preventing problems arising at work and enabling people to continue to work after a diagnosis of dementia. However, currently only 48% of people with dementia in the UK are diagnosed. People with early onset dementia can face particular delays receiving a diagnosis. Dementia is relatively rare in people under 65 years of age, and symptoms are often put down to stress or depression. In some cases it can be years before people receive a confirmed diagnosis. By this point they may have already had to stop working.

Once people have a diagnosis of dementia they can start to put the problems they may have experienced at work into context. They can begin to make plans, such as considering how long they want to carry on working, and have conversations with their employer about how they are able to support them to stay in work. Early diagnosis will also assist employers to provide support and seek specialist advice about how best to support that individual and plan for the future.

3.4 Stigma attached to dementia

There is a widespread lack of awareness of dementia and lack of understanding of how it affects people. People with dementia and their carers often refer to the stigmatising effects of diagnosis, the attitudes they encounter towards dementia and the profound effect this has upon them and their families. People who use Alzheimer's Society's services say they feared the reactions of colleagues and employers, and that they might not be supported to continue at work or would be discriminated against if they looked for a new job. Others reported negative reactions from colleagues when they told them about their diagnosis, including being bullied within their workplace. Increasing awareness of and reducing the stigma attached to dementia would enable individuals to acknowledge and discuss any problems that they might have at work because of their dementia and enable employers to make reasonable adjustments to support their needs.

Alzheimer's Society is attempting to tackle this stigma through the creation of dementia friendly communities.  This programme of work focuses on improving inclusion and quality of life for people with dementia so that people with dementia are more able to remain independent and have choice and control over their lives.  The Society is working to build evidence on the future of dementia friendly communities, but it is envisaged that such a community is one that shows a high level of public awareness and understanding so that people with dementia and their carers are encouraged to seek help and are supported by their community.  As part of this work we are running a Dementia Friends initiative, through which we aim to give people a better understanding of what it is like to live with dementia and what they can do to help.  The Society hopes to have reached a million people with the Dementia Friends programme by 2015.

3.5 Financial impact

The financial impact of giving up work particularly affects people with early onset dementia who are more likely to have financial commitments, such as a mortgage to pay, or to have dependent children. Those with early onset dementia may not be able to access their pensions early and may experience delays in accessing payments from insurance policies. This makes access to out-of-work benefits and careers advice particularly important for them.

3.6 Welfare

Alzheimer’s Society hears many examples of people struggling to access Personal Independence Payments and out-of-work benefits such as Employment and Support Allowance.  These problems include a lack of awareness of dementia amongst staff at job centres, and a failure to understand the impact of dementia on their daily lives. This can place extra pressure upon the person with dementia and their family at an already stressful time. Alzheimer’s Society believes that staff in public-facing roles who work for the Department of Work and Pensions and Jobcentre Plus must understand the impact of cognitive impairment and fluctuating conditions, such as dementia, as well as relevant legislation including the Mental Capacity Act.  The assessment process for benefits needs to be designed so that it can adequately measure the impact of dementia on a person's daily life and accurately assess a person's ability to work.  At present, we are concerned that the assessment is not appropriately designed for this purpose.  In the review of the Work Capability Assessment, Dr Litchfield recommends that healthcare professionals and decision-makers should have relevant experience of working with people with mental health problems.  The Society believes that assessors from contracted companies and decision-makers at the Department of Work and Pensions receive dementia awareness training so have the necessary knowledge to make decisions about benefits for a person with dementia.

4. Carers and employment

Caring for someone with dementia can be emotionally and physically exhausting. Some carers decide to give up work to provide care, others continue to work. However, combining work and caring for someone with dementia can be challenging. An Alzheimer's Society survey (2010) of people with dementia and their carers found that:

  • 53% of carers said that their work had been negatively affected due to their caring responsibilities.
  • 27% were worried that caring might have an impact on their capacity to work in the future.
  • 23% said that they had changed their work pattern and 19% had reduced their working hours.
  • 48% said they had flexible working arrangements at work.
  • Only 19% of carers indicated that their employer offered a specific policy for carers.

Alzheimer's Society hears examples of carers who access our services struggling to cope with caring for a loved one with dementia as well as working. In some instances the pressure became too much, and resulted in them having to take time off work due to illness. Other carers tell us that they welcomed the opportunity to take redundancy or early retirement, because they were struggling to cope.  The State of Caring 2013 report (Carers UK, 2013) found that 17% of carers reported that over half of carers who have to give up work to care, have spent over 5 years out of work as a result.  In a survey for the Carers Trust, nearly one-third of carers reported that they had not been offered health or care services at home.

One of the problems that carers tell us they experience is that they cannot access support services because they tend to only be open during working hours. This results in feelings of isolation, as well as extra pressure upon them, particularly if they have no other support from family or friends. Despite this, carers tell us that their employers are generally very supportive of them, for example allowing them time off to attend hospital appointments with the person they care for. However they recognised that there were limits to the amount of support employers could give, and admitted fears that their caring role was affecting their career progression or job security.  Employers for Carers (2014) found that 1 carer in 10 had taken a less qualified / senior role to fit around their caring responsibilities.

Carers must be supported to remain in work when they wish to do so, and employers should consider how they can facilitate them to do this, for example allowing flexible working hours, such as being able to take time off at short notice or work from home. In the Employers for Carers survey (2014), 41% of respondents stated that they would like more flexible arrangements for leave.  However, carers tell us that there also needs to be wider changes to improve the support available for the person they care for, so that they are able to continue working. For example a quarter of respondents to the Employers for Carers survey reported using technology. This includes:

  • Low-level interventions, such as grab rails or ramps
  • Greater integration between health and social care
  • Easily accessible services and information, including services that are available outside normal working hours or can be contacted by email.

As part of the Prime Minister's Challenge on Dementia, a task and finish group, jointly chaired by the Department of Health and Employers for Carers, looked at how carers can be better supported to remain in employment and at how different ways of supporting carers can help them to remain in work. The group's report, Supporting Working Carers: The Benefits to Families, Business and the Economy, was published in August 2013.

5. The Society campaigns for

  • The government to raise public awareness of employment rights and to increase employers awareness of the Equality Act and its relevance for employees with dementia
  • Employers to adopt good employment practices that support people with dementia and carers to remain in work if they choose, but also recognise dementia as grounds for early retirement and protect a person's entitlement to pension rights and other benefits
  • GPs to have the relevant skills, training and support to recognise the symptoms of dementia in all age groups. This will facilitate early diagnosis of dementia and prevent problems arising at work
  • Greater access to and uptake of dementia awareness training, including among employers and staff working for Jobcentre Plus.
  • A public awareness campaign to raise awareness of dementia and reduce stigma and discrimination so that people can openly discuss their diagnosis of dementia at work and be supported by their colleagues.
  • The development of evidence about how best to support people with dementia to remain in work and the sharing of best practice.
  • The creation of dementia friendly communities in England and Northern Ireland and dementia supportive communities in Wales.

6. References and further information

Alzheimer's Society's survey was sent to people with dementia and carers in late 2010. Many of the questions asked were analysed and used to inform Alzheimer's Society's Support.Stay.Save. (2011) report. However some questions relating to employment were not used and have been analysed for this public position statement.

Alzheimer's Society (2013), Dementia 2013: The hidden voice of loneliness

Alzheimer's Society (2012), Dementia 2012: A national challenge

Carers UK and Employers for Carers (2013), Supporting working carers: The benefits to families, business and economy

Carers UK (2013), State of Care report 2013

Department of Health, Prime Minister's Challenge on Dementia

Last updated: January 2014 by Laura Cook