Dementia is a national challenge and businesses are not immune. With an ageing population, not only will the average customer be getting older and be more likely to be affected by some form of dementia, but employees will also increasingly be dealing with caring responsibilities for loved ones with the condition, says Alzheimer’s Society’s George McNamara.
Dementia has long been considered to be an “old person’s disease” and “a natural part of ageing”; however, this is a huge misconception and one that could prove costly to businesses if they ignore the reality that their workforce and customer base are being affected by dementia every day.
Too frequently people hear the word dementia and picture an elderly person in care, unable to live well – and certainly unable to work. But in reality 800,000 people in the UK live with dementia, and 17,000 are under the age of 65. Two-thirds of people with dementia live in the community. This in itself has implications for employers, but with the statutory retirement age in the UK rising – and the number of people with dementia expected to increase to one million by 2021 – we will see many more people developing dementia while still in employment.
There are estimated to be 1.4 million people still in employment over the age of 65 in the UK (Office of National Statistics, 2012) and, with the removal of the statutory retirement age in 2012, this number has begun to rise and will continue to do so.
Coupled with this, in 2013 the dementia directed enhanced service (DES) was introduced to the GP contract to help tackle the low rates of dementia diagnosis. The DES promotes a case-finding approach where clinicians ask those who are at a higher risk of developing dementia if they are worried about their memory in order to refer them for appropriate tests. As a result, people are being diagnosed at an earlier stage, when they may still be functioning well and are able to cope at work with relatively few changes.
Many people with the condition are able to continue working, particularly in the early stages, and would choose to do so. Additionally, many people, and especially those with early onset dementia under the age of 65, have financial commitments such as mortgages or dependent children and so will need to stay in paid employment for as long as they are able.
Given that the Equalities Act safeguards people diagnosed with dementia against unfair treatment at work, employers must demonstrate they have made reasonable adjustments to enable people who develop dementia to continue to work. But in reality, people with dementia are not able to access support in order to stay in employment.
What is dementia?
Dementia describes a set of symptoms that may include memory loss, mood changes and problems with communicating and reasoning. These symptoms occur when the brain is damaged by certain diseases. Alzheimer’s disease is the most common form of dementia, but there are more than 100 other types including vascular dementia and Lewy Body dementia. Dementia affects people in different ways and the onset of the condition will vary depending on the disease. It is one of the main causes of disability in later life, ahead of cancer, cardiovascular disease and stroke.
The most common signs and symptoms of dementia include:
- struggling to remember recent events, but easily recalling things from the past;
- finding it hard to follow conversations or programmes on television;
- forgetting the names of friends or everyday objects;
- repeating conversations or information, or losing the thread mid conversation;
- problems with thinking and reasoning;
- feeling anxious, depressed or angry about forgetfulness;
- feeling confused even in familiar surroundings; and
- a decline in the ability to talk, read or write.
It is time to talk about dementia
Dementia is a hidden issue in the workplace. A widespread lack of awareness of the condition, and a lack of understanding of how it affects people, often prevents people from talking openly about dementia. We hear from some people using Alzheimer’s Society services that it is not uncommon for those experiencing the symptoms of dementia to try to conceal any difficulties at work from their colleagues or managers for fear of a negative response.
Fifty per cent of adults in the UK believe there is a stigma attached to dementia (Alzheimer’s Society, 2008). So it is no surprise that many people with dementia fear 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.
Diagnosis and how employers can help
Early assessment and diagnosis is important in preventing problems arising at work and enabling people to continue to work after a diagnosis. Currently, fewer than half of people with dementia (48%) receive a formal diagnosis. This can be because people are either reluctant to talk to their doctor and seek help, or because health professionals are not confident in making a diagnosis.
People with early onset dementia can face particular delays receiving a diagnosis because, as the condition is relatively rare in people under 65, the symptoms are often put down to stress or depression. As a result, it is likely that there are a significant number of people working with dementia who are unaware of their developing condition.
The Alzheimer’s Society service users tell us that prior to getting a diagnosis they were left questioning why they were struggling to complete routine tasks at work or having difficulty remembering the details of instructions they had been given. With no explanation for lapses in performance at work some lost their jobs and others chose to leave work because they no longer felt as capable.
However, 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 they can have conversations with their employer about how they are able to support them to stay at work.
Early diagnosis will also assist employers to provide support and seek specialist advice from services such as occupational health (OH) about how best to support that individual and plan for the future.
People who develop dementia while working, irrespective of their age, often fear going to their GP to get a diagnosis because they feel that they have everything to lose. Employers can help by having clear and open policies about how the organisation will support people who develop dementia and encourage staff to be aware of the condition.
To tackle stigma and improve awareness of dementia, employers should:
- run awareness-raising activities in the workplace;
- create an environment where staff can talk about dementia and encourage an open dialogue;
- ensure that managers are aware of dementia in the workplace and how it might affect their staff – in Carers UK’s “Supporting employees who are caring for someone with dementia” report, 57% of employers said they would like help to provide carer and dementia-awareness training and yet only 19% provide this kind of support for managers; and
- include dementia-related information on staff notice boards, in newsletters and in reading areas.
The Alzheimer’s Society runs Dementia friends information sessions for businesses to help staff learn about dementia and the steps they can take to make a difference to the lives of people with the condition.
From local small businesses to the likes of Marks & Spencer, Home Retail Group and Lloyds Banking Group, many organisations have committed to helping their staff understand more about dementia. This is an important first step.
Supporting a person with dementia
Dementia is a progressive condition that will increasingly impair a person’s ability to work. Eventually, it will come to a point where it may no longer be possible for them to continue to work, and the person and their employer will be concerned about future changes. When it becomes clear that an individual is no longer able to fulfil their role, there needs to be an open and honest discussion about this, support to make decisions, and a conversation to explore any options and access to pensions and benefits advice.
Retirement can be a daunting prospect for those who are not prepared for it, and going from a busy working life to not working is even more difficult with a diagnosis of dementia.
Employers can help by supporting people to retire in a gradual way – perhaps by reducing hours at work over a period of time or changing their role in an organisation.
Case study: Working with dementia
Professor George Giarchi, aged 84, was diagnosed with Parkinson’s disease dementia two years ago. He began working at the University of Plymouth in 1977 and, post diagnosis, continues to work there as a professor of social care studies.
Giarchi admits that things have had to change since he was diagnosed with a form of dementia and his colleagues have had to make allowances, although “they recognise it’s not me, it’s the damn business of having Parkinson’s dementia”.
He says that after receiving his diagnosis, he felt a sense of inadequacy and was nervous about telling his colleagues – but recognises that he was in a unique position as he and his colleagues have worked and researched in the field of dementia and understand the disease better than many. Giarchi fears that those who don’t have sympathetic colleagues and managers must feel like “lepers who are a thorn in the side of an organisation” and that people with dementia in lower-skilled, high-turnover professions may face additional difficulties.
Giarchi continues to lecture students in social care, but makes them aware of his condition from the start. He says: “While I wish to goodness that I didn’t have these halting moments which rob me of eloquent conversation, I don’t feel pushed out.” He urges business leaders to understand that although dementia is likely to affect a person’s ability to do certain tasks, many skills and abilities are retained – often for a considerable time.
Good work in practice: dementia-friendly finance
The “Dementia-friendly financial services” charter is a guide that the Alzheimer’s Society has created in partnership with Lloyds Banking Group and in consultation with 24 other financial services organisations to help the industry become more dementia friendly.
It lays out ways this could be done, including offering customers with the condition more choice, such as the option to flag up to the bank that they have dementia so customer service can be tailored appropriately. Another suggestion is the appointment of a “champion” to drive forward the principles of the charter in each branch.
So far, the charity has secured support from the Financial Services Ombudsman, the British Bankers’ Association, the Building Societies Association and the Association of British Insurers. Several sector leaders including Barclays and RBS have already signed up to the charter.
The Alzheimer’s Society continues to call for organisations from across the financial services industry to sign up to the principles of the charter and start reflecting on the changes they need to make.
The Alzheimer’s Society is working with small and large businesses as part of the Prime Minister’s challenge on dementia. The society is committed to looking at what businesses and organisations need to do to become dementia friendly.
There is an increasing acknowledgement by businesses and organisations about the need to act; turning this into a reality is the vital next step. Those who recognise and act are crucially acknowledging the benefits, such as increased retention of skilled staff, but responding to a change in the labour market that will increase in impact.
Mental Health Foundation (2008). “Dementia: out of the shadows”. Alzheimer’s Society.
When reasonable adjustments are not made
A study published in January 2014 on the experiences of people who developed dementia while still in employment in the UK – “Dementia: The international journal of social research and practice” – found that they do not always receive the reasonable adjustments in the workplace to which they are entitled under the Equality Act.
Of the five people with dementia who participated in the study, three felt that when they received their diagnosis and informed their workplace no real attempt was made to find any adjusted work role for them. In one case, a nursing assistant with dementia was unofficially supervised by his colleagues and then, on receiving a formal diagnosis by a neurologist, a meeting was arranged with OH and his ward sister; his employment was terminated at once. Although acknowledging that he had some difficulties in direct nursing tasks with patients, the nursing assistant felt that he retained many valuable skills on the ward and could have continued work for a time in an adjusted role.
In terms of the Equality Act, the definition of what might be “reasonable” remains largely untested, but it is clear that the law is intended to be facilitatory and not punitive. However, in its application this does not always seem to be the case.
Caring for carers in the workplace
While the emphasis of this article has been on people with dementia in the workplace, it is important to mention the 670,000 people in the UK acting as primary carers for people with dementia. Carers UK’s “State of caring” survey found that nearly one carer in five was looking after family members with dementia and that these carers were more likely than others to be in full-time employment.
Caring for someone with dementia can be highly stressful and upsetting. It can also become progressively more demanding, both physically and emotionally. Research from the Alzheimer’s Society has found that 52% of carers have insufficient support to carry out their caring duties, and this has a negative effect on their physical and mental health. A survey from Carers UK (2013) found that one carer in six leaves work or reduces their hours to care.
As the number of working-age people caring for older loved ones with health conditions rises, the effect on people’s ability to work is becoming an increasingly critical issue for employers. A Carer UK survey (2014) of 85 employers from the private, public, voluntary and community sectors found that only one in five provided training and support for managers in carer awareness or implementing support for working carers and training and support in dementia awareness for managers.
More must be done to address the issues of caring and dementia in the workplace. It is important to signpost information and support, and ensure that carers are aware of their entitlement to flexible working.