I recently had the opportunity to review the ‘Dementia in Europe Yearbook 2023’, which was published by Alzheimer Europe, the umbrella organisation of 41 national Alzheimer's non-governmental associations from 37 European countries, including the Malta Dementia Society.

The Yearbook focuses on employment and social protection for persons with dementia, as well as their carers, across Europe. Within the text, one finds both concrete examples of legislation and policies, as well as recommendations in the respective fields.

The Yearbook discusses various challenges, risks, and opportunities faced by persons with dementia and their carers during the lifecourse, not least during their respective working years. It highlights the various costs related to diagnosis and dementia itself, and presents testimonies of lived experiences of such persons. Here one encounters examples of good and bad practices, which, in turn are situated within specific policy-contexts in respective societies.

In this regard, it is important to emphasize that dementia-related policies in the fields of employment and social protection are complex and diverse: There is no such thing as a uniform policy-model across the European Union. One finds commonalities and differences in terms of legislation, implementation and national competence, albeit influenced by the EU’s soft-policy approach within the Open Method of Coordination (for example through recommendations via the European Semester).

Hence, persons with dementia and their carers must navigate within policy frameworks and social networks, which vary from national laws to the respective networks and relations one may have at the place of employment.

Across Europe, one finds complex and variable levels of support, which, in turn, are often too bureaucratic and inadequate. In various instances, policies for eligibility to social rights are too conditional, strict, selective and/or insufficient. One also notes poor accessibility to various services.  Besides, various policies tend to be too dependent on rigid employment situations, with a lack of flexibility and a lack of appreciation to different lived experiences across the lifecourse. For example,  there often is a lack of sensitivity towards the worker-to-pensioner transition. Here it should be emphasized that employment is not simply an instrumental need, but also a source of social identity and interaction.  

Thus, there are limited policies to support persons with dementia and carers to continue employment or to access social welfare. Various policies are too generic and thus fail to be applicable to specific symptoms and needs. Unfortunately, therefore, various Governments are not upholding rights of such persons, even when they are signatories of conventions or subjected to EU policy.

On the other hand, positive policies in difference countries include economic support, legal recognition, automatic entitlement (i.e. not means tested) to welfare, support to caregivers, services by social workers, educational campaigns and subsidies to employers.

Within the European context of different laws, policies, institutional set-ups, eligibility conditions and accessibility, it is therefore important that good practices are as much as possible implemented elsewhere through policy transfer. In this regard, within the EU, it is imperative for the European Commission to conduct thorough analyses of social protection systems and services, as well as to provide guidance to member states and to tackle policy gaps to reduce inequalities.

The report also emphasizes that Governments should ensure that both on a macro level (e.g. policies and legislative frameworks on employment and social protection) and a micro level (e.g. persons with dementia, carers and respective families), there should be adequate financial support as set out in the United Nations Convention on the Rights of Persons with Disabilities, the Charter on Fundamental Rights, the European Pillar on Social Rights, as well as European Union measures giving effect to the policies relating to disabilities, employment and social protection.

It is also emphasized that countries should have their own national strategies for dementia, and that new metrics such as the disability employment gap, should be operationalized.

In sum, Alzheimer Europe’s recommendations focus on employment and social protection within the respective EU and international frameworks of respective rights.

In my review of this report, I also presented some observations and comments which can be discussed further. These include,

·         The need to analyse various levels of independence and dependence amongst different persons with dementia, and to ensure that policies cater for diverging needs and realities (for example advanced care planning, geragogy, etc..);

·         The need to factor in social determinants such as class background, gender, ethnicity, citizenship, which may influence the opportunities and outcomes of persons with dementia and carers;

·         The need to invest in social capital so as to ensure that persons experiencing a lack of social networks are not socially excluded;

·         The need to involve lifelong learning, at all stages of one’s lived experience of dementia, so as to help fulfil and express people’s potential; and

·         The need to employ social impact assessments to inform evidence-based policy making.

The ‘Dementia in Europe Year Book’ thus provides a very important resource for the Social Policy of the European Union in general and national governments in particular. It also provides a commendable method for other voices across civil society in their policy recommendations.

 

Dr Michael Briguglio is a sociologist and senior lecturer at the University of Malta

www.michaelbriguglio.com