Employment and dementia

Employment and Dementia Position Statement

1. Summary

Employers must be prepared to support the 42,325 people aged under 65 with dementia, many of whom continue to work following diagnosis, (Alzheimer's Society, 2014) and the 27 per cent of carers who continue to work after a diagnosis of dementia (CEBR, 2014). The Equality Act (2010) requires employers to avoid discrimination and make reasonable adjustments to ensure people with dementia are not disadvantaged in the workplace. Employers are also obliged to consider requests for flexible working from carers under the Flexible Working Regulations (2006).

Employers should provide appropriate support throughout the journey of a person with dementia. As the condition advances, employees will require information, advice and guidance about finishing work. The same support should be provided to people with dementia and carers who do not want to continue to work following a diagnosis.

2. What the society calls for:

  • The government to raise awareness of employees' rights and employers' responsibilities. The Equality Act requires employers to avoid discrimination and make reasonable adjustments to ensure people with dementia and their carers are not disadvantaged in the workplace. Carers of people with dementia also have the right to request flexible working and time off. Many carers and people with dementia are, however, unaware of their rights. There needs to be a concerted effort to raise awareness of the Equality Act and Flexible Working Regulations.
  • Employers to adopt good employment practices that support people with dementia and carers. Many people continue to work after a diagnosis with dementia. There should be a discussion of a variety of options to support the person to stay in work. Employers should seek further advice where a reasonable adjustment cannot be easily identified. Employers should also provide information, advice and guidance about finishing work to people with dementia and carers who are unable, or no longer wish to, continue working.
  • Long-term planning for an ageing society. 89% of employers believe that dementia will become a bigger issue for their organisation as the workforce ages, the retirement age rises and the number of people with dementia increases (CEBR, 2014). The Society supports the phasing out of the retirement age but, as part of this, employers must be prepared to address the needs of people with dementia at work.
  • Increased requirements for employers to allow caring leave and incentives for employers to develop carer support schemes. 21 per cent of carers give up work or reduce hours at a cost to businesses in England of £1.6 billion (CEBR, 2014). Support services can help carers to continue to work. However, under half of carers of people with dementia have been offered support in the workplace (CEBR, 2014).
  • Easier access to welfare and benefits. People with dementia and their carers often struggle to access their entitlements as a result of poor staff training and inappropriate assessment processes. Three changes are required:

1. Decisions about Employment and Support Allowance (ESA) for people with dementia should be taken by Department of Work and Pensions and Job Centre Plus staff who understand the impact of dementia in order to avoid long, costly and distressing appeals. As a minimum, staff should be trained to the level of a Dementia Friend.

2. Medical assessments for Personal Independence Payment (PIP) and ESA should be carried out by healthcare professionals with specialist knowledge and experience of dementia. The Society has developed a guidance document on the impact of dementia for healthcare professionals conducting assessments for PIPs. As a minimum, the Society campaigns for this guidance to be distributed to all assessors.

3. The assessment process needs to be designed so that it accurately assesses the impact of dementia on a person with dementia's life and ability to work.

  • Improved financial information, advice and guidance. The financial impact of giving up work particularly affects people with early onset dementia who are more likely to have financial commitments and dependent children. Health and social care organisations and professionals should refer people to appropriate sources of financial information, advice and guidance.
  • Provide flexible support services. Carers of people with dementia tell the Society that they struggle to access support services during working hours. This increases isolation and pressure on working carers. Health and social care organisations should ensure that a range of practical and emotional support services are made available outside of working hours.
  • Tackle stigma about dementia. People with dementia have reported negative reactions at work to their diagnosis, including bullying. 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. The Society works to tackle stigma by encouraging businesses to adopt the recognition process for Dementia Friendly Communities. In England, some employers in the Dementia Action Alliance have also committed to becoming dementia friendly.
  • The development of evidence about how best to support people with dementia to remain in work and the sharing of best practice.
  • Improvements in diagnosis and referral rates and better access to care and support for people with dementia and carers. These wider measures can help minimise or prevent problems emerging at work. Please see our briefings for more information.

3. References and further information

Alzheimer's Society (2014), Dementia UK: second edition

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

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

Alzheimer's Society's Support.Stay.Save. (2011)

Centre for Economics and Business Research (April 2014), Cost of dementia to English businesses: A study into the costs to business from time taken to care, workforce skills and knowledge lost and consumer spending at risk through a lack of understanding of dementia

Department for Work and Pensions (2014), Disability Confident promotional material (https://www.gov.uk/government/publications/the-disability-confident-campaign)

Employers for Carers (2014), Supporting carers who are caring for someone with dementia

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

Department of Work and Pensions Select Committee (2014), Access to work inquiry

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