On 1 March 2022, the European Commission issued a call for evidence on the development of a European Care Strategy, which aims to strengthen long-term care and early childhood education and care, as envisaged under the European pillar of social rights.
It will highlight the need for high-quality, accessible and affordable care services for children and people who need long-term care. The initiative will propose two Council recommendations, one on childcare (revision of the Barcelona targets) and one on long-term care.
Alzheimer Europe’s response to the call for evidence addresses key issues relevant for people with dementia and their carers, identifying additional areas of potential focus for the European Care Strategy, as well as further evidence and areas of work we believe the are relevant for the development of the Strategy.
Overarching review of approach of the European Commission
Alzheimer Europe broadly agrees with the approach set out by the European Commission and believes that many of the key issues in relation to long-term care have been identified, including:
- Affordability of care
- Accessibility of care
- Moving towards community-based models of care
- Preparing for changing demographics
- Building capacity in the care workforce
- Addressing gender gaps in both formal and informal care
- Ensuring quality of care.
Alzheimer Europe would like to some additional considerations being specifically addressed within the long-term care strategy, to strengthen and build upon the points already identified.
Training and competence of staff
Whilst building capacity in the workforce is welcome, the focus thus far has been largely upon increasing the numbers of people working within the sector. Whilst this is of course welcome, Alzheimer Europe would like to highlight the need for staff within the care sector to have a high standard of training and skills to allow them to deliver high-quality care and support for people with dementia.
In particular, during the moderate and severe stages of illness, the needs of people with dementia (and their carers) are especially complex, requiring the skills and inputs of multidisciplinary professionals. Furthermore, the cognitive symptoms of the condition progress, with physical symptoms, such as frailty, incontinence and difficulties with mobility becoming more acute. It is essential that the progressive nature of dementia, and the high-intensity of care required by people living with the condition, is recognised and considered as part of planning and development of the future workforce.
Alzheimer Europe stresses that the Commission (and Member States) must consider not only that the number of people requiring services will increase, but the nature and intensity of this support required is likely to become increasingly complex and specialist in nature.
As such, the skills and training required of professionals working in long-term care should reflect this complexity, with workforce frameworks in place in each country, supported by the European Care Strategy.
An additional area we believe should be a key focus for the long-term care strategy is that of care coordination. A recurring theme in Alzheimer Europe’s engagement with its national member associations, national governments and our European Working Group of People with Dementia (EWGPWD) is the often disjointed and fragmented nature of care-services. This often arises as a result of the varying responsibilities of different levels of the state (e.g. municipal level control of health or care services etc.), poor communication between different sectors of health and social care (e.g. between primary and secondary health care), as well as the number of different actors involved in providing services.
Care pathways are often complex and unclear, particularly from the point of view of the person or family member. Particularly for long-term progressive conditions such as dementia, this complexity and lack of coordination between long-term care services often creates additional stress and difficulty, both for the person with the condition and their families and carers. As such, we believe that the long-term care strategy must identify good practices for care-coordination between different organisations and disciplines, in order to improve the experience of people in receipt of support.
Alzheimer Europe Dementia Monitor 2020
In March 2021, Alzheimer Europe published the Dementia Monitor 2020, a high-level snapshot of the response of countries in Europe in relation to dementia, across 10 areas, including care and support services, policy drivers and legal protections, from 36 countries across Europe. The report was developed through Alzheimer Europe working with its national member associations to gather information and wasthe second such publication, the first having been published in 2017.
A major component of the report is the examination of the affordability and availability of 18 different care services in each country, including home care, care homes, meals on wheels and other types of supports and services.
Below, we have included findings related to these services, which we hope will be useful in identifying the types of services and support which require further attention and may be usefully addressed by the forthcoming European Care Strategy.
For full details, the Dementia Monitor 2020 can be downloaded here: https://www.alzheimer-europe.org/sites/default/files/2021-11/European%20Dementia%20Monitor%202020%20%20Comparing%20and%20benchmarking%20national%20dementiastrategies%20and%20policies.pdf
Availability of services
The types of services rated as sufficiently available varies considerably, with incontinence help being rated as sufficiently available in 20 countries (out of 36), whilst care coordination (four countries) and assistive technologies (five countries) having the lowest availability.
Broadly, the number of sufficiently available services improved across Europe, compared to the 2017 Dementia Monitor. For example, incontinence help, meals on wheels, home help, counselling, support groups for carers, Alzheimer cafes, daycare, support groups for people with dementia, palliative care, respite at home, and holidays for carers, all showed increases in the number of countries rating these services as sufficiently available (since 2017). By contrast, home care, assistive technologies and care coordination showed a decrease (from 2017) in countries reporting sufficient availability. All other services showed no change.
From the findings in the 2020 Dementia Monitor, we drew the following conclusions about the availability of care services across Europe:
- There has been an increase in the number of countries where the majority of services are considered as being sufficiently available
- The majority of services have shown an increase in the number of countries reporting that they are sufficiently available
- With the exception of incontinence help, all other services have a majority of countries which report that these services are inadequately available or absent
- A majority of countries continue to report that most services are insufficiently available or absent.
Compared to the 2017 Dementia Monitor, we noted little change in the way in which services and supports are funded within European countries. Very few countries provide full funding for the majority of services, with Denmark, Finland, Malta and Norway being the only countries which have 50% or more of care services being fully funded by the state (the same number of countries as 2017).
By comparison, there is a significant number of countries in which 50% or more of services are self-funded. This is the case in Bosnia-Herzegovina, Bulgaria, Croatia, Cyprus, Greece, Italy, Latvia, Poland and Romania.
Our report also noted an increase in the number of countries providing some level of support for assistive technologies, tele alarms, meals on wheels, adaptations to home, counselling, carer training, incontinence help, residential care, palliative care and day care.
Conversely, fewer countries provided funding for holidays for carers, Alzheimer cafes, support groups for people with dementia, respite care, support groups for carers, home helps and home care. There was no change in the level of funding for care coordination.
A majority of countries provide full or co-funding for the majority of services, with holidays for carers, assistive technologies and Alzheimer cafes the only services for which a minority of countries provide some level of funding.
The most commonly publicly-funded services include daycare, palliative care, incontinence help, home care and residential care. Conversely, holidays for carers and assistive technologies are some of the least supported by public financing.
- The key takeaway messages on funding from the Dementia Monitor 2020 are as follows:
- The majority of services continue to be funded (at least in part) in the majority of countries
- The majority of services showed an increase in the number of countries providing some level of funding
- Disappointingly, a significant number of countries (9) have a majority of services (50% or above) which are self-funded
- Some services show a reduction in support from the state compared to 2017, including support groups and Alzheimer cafes.
Second Joint Action on Dementia – Act on Dementia
The EU’s second Joint Action on Dementia 2016-2019 (Joint Action on Dementia) identified a number of areas of good practice and resources in the provision of care and support for people with dementia. Specifically, the following Work Packages have highlighted successful projects on the provision of long-term care in the following areas:
- Diagnosis and post-diagnostic support
- Crisis and care coordination
- Residential care.
Despite this work, Alzheimer Europe has seen little evidence that the approaches and resources used during the Joint Action are being further applied across Europe, either in policy or practice.
Whilst the recommendations and resources are specific to dementia care, we believe that the findings from both the Crisis and Care Coordination, and Residential Care Work Packages could have broader applicability for the European Care Strategy. As such, we would strongly urge the European Commission to revisit this work and utilise its findings in forthcoming strategy.
The full findings of the Second EU Joint Action on Dementia are available at: https://web.archive.org/web/20210301232337/www.actondementia.eu/resources
World Health Organization (WHO) framework on long-term care
In March 2022, the World Health Organization (WHO) published a “Framework for countries to achieve an integrated continuum of long-term care”, providing guidance and highlighting key components of long-term care systems to support countries establish sustainable and equitable long-term care provision. It includes a checklist to help assess existing long-term care systems, identify potential gaps, and ultimately help in planning for next implementation steps.
In addition, it identifies the need for long-term care systems and services to:
- Be person centred and aligned with the person’s values and preferences
- Optimise functional ability over time and compensate for loss of intrinsic capacity
- Be provided in the community
- Provide integrated services in a continuum
- Include services that empower older persons
- Emphasise support for carers and care workers.
Many of these thematic areas are identified within the background note produced by the European Commission, in advance of the strategic dialogue online meeting. To avoid duplication of effort and to provide a coordinated and coherent approach in Europe, we believe that it would be useful for the proposed actions of the European Care Strategy to align and reflect the work of the WHO in this area.
The framework can be downloaded at: https://www.who.int/publications/i/item/9789240038844
Alzheimer Europe believes that the proposed approach of the European Care Strategy is positive and identifies many of the key challenges which must addressed by Member States if the objective of accessible, affordable, high-quality long-term care for all citizens who need it, is to be realised.
We believe the proposal can be strengthened by the inclusion of additional points related to training and skills of the workforce, as well as a dedicated focus on care coordination.
Alzheimer Europe would be pleased to further contribute to this work and would be happy to provide further information on the specific needs of people with dementia and their carers, as may be helpful for the Commission.