Dementia in Europe Yearbook 2022 Employment and related social protection for people with dementia and their carers

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Employment and social protection are some of the most complex challenges that people with dementia, their families and carers face. For people of working age who receive a diagnosis of dementia, it is likely that many will face a significant loss in earnings as a result of their condition, as the symptoms may gradually prevent them from remaining in employment. Similarly, working age informal carers may find themselves having to reduce their hours or leave the workforce altogether, as they take on greater responsibilities such as managing household tasks, as well as providing care and support to the person with dementia.

This is even before consideration is given to the additional costs associated with a diagnosis of dementia, including those in relation to services, support, medicines and products, the reimbursement of which varies considerably across Europe, as we have set out in our previous European Dementia Monitor reports. Therefore, even when individuals have retired, the additional financial impact of dementia will be profoundly felt. It is therefore incumbent upon governments to ensure that the policies and legislative framework on employment and social protection ensure that people living with a diagnosis of dementia, as well as their families and carers, receive adequate financial support, in a way that upholds their rights, as set out in Charter of Fundamental Rights (CFR), the European Pillar of Social Rights (EPSR) and the United Nations Declaration on the Rights of Persons with Disabilities (UNCRPD).

Yet, the picture emerging from countries across Europe suggests that this is not happening and that the approaches of governments are not adequately upholding these rights. From the survey responses of our members, a number of key themes emerged. The first is the limited number of dedicated policies or initiatives included within national dementia strategies to support people with dementia or cognitive difficulties, and their carers, to continue in employment.

Additionally, policies do not take into account the specific symptoms associated with dementia and the progressive nature of the condition. Another key issue emerging is the complexity and variable levels of support provided to both people with dementia and/ or carers in the form of social protection. We heard a number of countries suggesting that the process for benefits was overly bureaucratic and complex, with the level of financial support often regarded as insufficient to adequately meet the needs of people with dementia or their carers.

Most importantly, we collected and present testimonies and examples of people with lived experience throughout the Yearbook which should be read carefully by anyone seeking to bring improvements to the lives of people with dementia, their families and carers. Whilst there are examples of good practice where people have been well supported to continue working or move into retirement, these contributions illustrate that too often people with dementia experience little in the way of support from employers, with abrupt cessation of their employment. This is often stressful, emotionally as well as financially, as the routine, identity and purpose of the individual are fundamentally altered.

Alzheimer Europe is grateful to our members for highlighting resources and good practice examples, both of their own work and that of governments and other organisations, which we have incorporated in a dedicated section. It is our hope that these will help in the development and spread of better policies and practice across Europe.

However, it is evident that the good practice examples themselves cannot, by themselves, deliver the profound systemic changes which are needed to support people with dementia and their carers. As such, Alzheimer Europe concludes this Yearbook with recommendations aimed at different stakeholders, including national governments and the EU.

Finally, we wish to thank our members for their contributions, without whom, this publication would not be possible. we would also like to acknowledge the work of our Policy Officer, Owen Miller, for his work in compiling the information in the Yearbook and writing the report.