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Alzheimer Europe report highlights gaps in support for people with dementia to live independently
The Dementia in Europe Yearbook 2024 provides an overview of the situation in Europe relating to independent living and housing policies, and the extent to which they apply to people with dementia.
It compares the European and International rights-based treaties, such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), with the current practice and policies in countries across Europe.
The Yearbook found that the concept of independent living is addressed in a number of policy perspectives, including dementia-specific approaches, as well as those for older people and people with disabilities.
Countries have a range of services and home-based support but whilst home adaptations are often accorded state funding, available support from the state to use technology is limited.
Housing policies generally contain no measures relevant for people with dementia (i.e. building adapted housing).
Specific adapted residential offerings for people with dementia tend to only be nursing homes or care homes, however, small-scale examples of new models are emerging, for example co-habitation housing and dementia villages.
The Yearbook highlights the experiences and views of people living with dementia and carers/supporters including testimonies of their experiences and views.
The Yearbook contains a number of recommendations for both European and national policy-makers to improve the situation in Europe.
Luxembourg, 9 January 2025 – Alzheimer Europe has today launched the Dementia in Europe Yearbook 2024, which is dedicated to independent living and housing for people with dementia. Independent living is a long-established concept within the disability community and vitally important to ensuring the rights of people living with disabilities are respected. It incorporates almost every aspect of a person’s day-to-day life, across care and support services, social protection, legal capacity, housing, and accessibility, amongst many others.
The 2024 Yearbook examines the overarching European and International accords which set out the rights of people with disabilities, identifying the relevant provisions of the Charter of Fundamental Rights, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the European Pillar of Social Rights. It also examines how each European country addresses independent living and housing for people with dementia, through policies, services and supports.
The report finds that governments approach independent living from a number of different strategic documents, including dementia-specific strategies, as well as policies focused on older people or people with disabilities. Whilst the concept of independent living is recognised as important and is applied broadly, this approach can lead to people with dementia being overlooked, especially in countries where dementia is not recognised as a disability.
Furthermore, the 2024 Yearbook highlights examples of the services and support which aim to enable people to continue living independently and at home for as long as possible. These include health and social care services delivered in the home, but also community-based services such as day centres and Alzheimer Cafés. It is evident that a mix of health and social care services, as well as broader social support, are vital in maintaining the wellbeing of people with dementia and helping them to remain active within their communities.
In relation to housing, no countries has developed housing strategies which specifically address the needs of people living with dementia, such as requirements to design and build more specially-adapted housing. Whilst there is support available across most countries for individuals to make adaptations to their home, it is disappointing to see that there is only limited support available for new technologies to allow individuals to remain at home, with technology often limited to telecare services and alarms.
A key focus of the Yearbook is to establish the extent to which there are models of community-based housing and residential care specifically for people with dementia which are aligned with the principles of independent living. Alzheimer Europe finds that there are few examples of this and that where adapted residential facilities are highlighted, these are mostly traditional facilities such as care or nursing homes. However, some different models of community-based residential support are emerging, usually on a smaller scale, including co-habitation housing or dementia villages.
Alzheimer Europe is pleased to be able to include the views and experiences of members of the European Working Group of People with Dementia (EWGPWD) and the European Dementia Carers Working Group (EDCWG). In addition to the need for awareness of dementia within communities, two key themes emerge from both groups, including the importance of proactive stage-specific services which provide support throughout the full progression of the condition, as well as the need for services to adapt to the specific context of the individual, with particular consideration for the support network of the person (e.g. whether the person has an informal carer, family etc.).
Members of the EWGPWD were clear that awareness and understanding of dementia is essential, and is the foundation for them to be able to continue to live well within their communities. Additionally, the EDCWG highlight the need for support to be tailored to the specific situation and needs of the individual with dementia.
The Yearbooks contains a number of recommendations for both European and national decision makers, listed below:
Recommendations for national governments
Embed training for health and social care professionals on dementia as part of the curriculum and training for practicing professionals, to significantly address continued stigma and poor understanding experienced by people with dementia and their carers.
Support public-facing awareness campaigns to improve public understanding about the condition, challenging the stigma and harmful pre-conceptions about the condition.
Provide sufficient and sustainable funding and resources for the development and operation of resource centres/day care centres etc. that allow people with dementia to continue to be active and engaged in their communities.
Through collaboration with professionals, municipalities, service providers, non-governmental organisations and people with lived experience, explore alternative models of community-based care (including residential care), alternatives to existing nursing home or institutional settings.
Ensure that social protection and social/health insurance systems provide reimbursement for assistive technologies, home adaptations and mobility aids, to ensure the ability of people with dementia to live at home for as long as possible.
Work to ensure better alignment between policies, strategies and laws relating to inter alia social protection, health, older people, disabilities and housing, to ensure that the needs of people with dementia are addressed in a coordinated manner.
Develop structures, both legislative and structural, to ensure the safeguarding of people with dementia (and other conditions), to reduce the risks associated with harm (physical, mental, financial etc.) that may arise as a result of their condition.
Recommendations for European Commission
Support care-focused research within the Horizon Europe programme and future framework programmes, to explore innovative models of independent living for people with dementia living in community settings.
Ensure greater funding through both the Social Fund Plus (ESF+) than the Regional Development Fund (ERDF) for Member States to reform long-term care systems within their countries, to move towards home- and community-based models of care.
In line with the UNCRPD obligations and European Strategy on the Rights of Persons with Disabilities, encourage Member States to adopt a definition of disability which includes cognitive disabilities and dementia
Commenting on the publication of the report, Alzheimer Europe’s Executive Director, Jean Georges, stated:
“Whilst many of the policy issues around independent living and housing are primarily the responsibility of national governments, the EU can play an important role in supporting Member States to ensure that the concept of independent living becomes a reality for people living with dementia. In particular, Cohesion Funding can play a vital role in allowing Member States to implement reforms to care and housing systems, to ensure that people with dementia can live as independently as possible in their communities.”
For further information, contact: Jean Georges, Executive Director, Alzheimer Europe, 5B Heinhaff, L-1736 Senningerberg, Tel.: +352-29 79 70, Fax: +352-29 79 72, jean.georges@alzheimer-europe.org, www.alzheimer-europe.org
Notes to editors: Alzheimer Europe is the umbrella organisation of national Alzheimer associations and currently has 41 member organisations in 36 European countries. The mission statement of the organisation is to change perceptions, practice and policy to ensure equal access of people with dementia to a high level of care services and treatment options.
The 2024 Dementia in Europe Yearbook received funding under an operating grant from the Citizens, Equality, Rights and Values programme Programme. The views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Commission. Neither the European Union nor the granting authority can be held responsible for them.
In early 2024, Alzheimer Europe surveyed its members, asking about the policies and legislation in their countries, as well as asking for good practice examples. In particular, the survey sought to understand the extent to which current policy and legislation addressed the issues of independent living and housing, in particular how these related to people living with dementia. A total of 28 responses were received.
Luxembourg, 9 January 2025