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PL2. Dementia care in the 21st century

Detailed programme and abstracts

PL2.1. The costs of dementia care

WIMO Anders

In 2015, 47 million people in the world lived with dementia (about 10.5 million in Europe). The numbers are expected to be 75 million in 2030 and 132 million in 2050. The socioeconomic impact is enormous: the global economic cost was estimated at 818 bUS$ in 2015, an increase by 35% since 2010 (300 bUS$ in Europe). The range in costs per person with dementia and year in the different economic regions in the world is about 1,000 (low income) to 36,000 US$ (high income); in Europe 12,000 (Eastern) to 35,000 US$ (Western). The main reasons for the increase in costs are an increased number of people with dementia and an increase by the cost per person with dementia. In 2018, it is expected that the one trillion US$ breakeven will be reached and 2 trillion in 2030. About 40% of the global and European costs are due to informal care. 86% of the global costs occur in high income countries, a great contrast to how the hours of informal care are distributed. Quantification and costing of informal care are complicated issues and the greatest variation in societal costs occur when costs of informal care are varied, giving a range between 650 (only support in basic ADLs) to 1050 bUS$ (all ADLs and supervision). With a more complex costing variation of informal care in a Swedish cost of illness study, the ratio in informal care costs, from lowest to highest, was almost a factor of ten. Due to different methodological approaches and uncertainties, any cost of illness study must be transparent and include a comprehensive sensitivity analysis.

PL2.2. Care guidelines and national dementia strategies


Dementia is devastating condition leading to loss of cognitive function, dependency and changed behaviour. Regardless cause and degree of dementia, age, gender and place of living all people with dementia should have the right to have access to, and receive care according to their needs as measured by the degree of disability, their special interests and on the individuals’ background. Further, service provision should be based on important ethical principles such as respect for individual autonomy and dignity and be tailored so that people with dementia feel secure and have a meaningful day-to day life. Another principle is that the services should be based on the framework of person-centred care.

To achieve such goals national dementia strategies and care guidelines are of importance. During the past ten years we have learned which impact national dementia strategies may have on the service provision to people with dementia in several European countries, among others France, Norway, Belgium and UK, which were the first countries that launched a dementia strategy. Strategies launched by national social and health authorities (Ministries) have improved the awareness of dementia in the public, more people with signs of dementia have received a diagnosis, more people have had access to services and received services according to their needs. Another way of developing high quality care for people with dementia is to establish national care guidelines, based on the best evidence from the literature. Some European countries like Sweden, have been successful in improving the care for people with dementia using care guidelines as a tool to improve the services. However, it is of importance that care guidelines are anchored, like the dementia strategies, at national social and health authorities, and that politicians are willing to finance public services that are recommended by the care guidelines and strategies.

PL2.3. The experience of carers of a diagnosis of dementia: results of a five-country survey


During the first six months of 2017, over 1200 carers for people with a diagnosis of dementia have completed a detailed survey regarding their experiences before, during and after the diagnosis. The survey has been coordinated by Alzheimer’s Europe, involving member organisations in the Czech Republic, Finland, Italy, the Netherlands and Scotland in its planning, design, translation and distribution. The majority of respondents have used an on-line survey platform, but a substantial number of paper versions have also been completed. Distribution has been through the relevant networks in each country, newsletters, e-mail and social media. Carers are invited to report what were the first indications that something was wrong, and what led to help being sought by the person with dementia and/or themselves. Questions about the diagnostic process itself include which professionals were involved, what assessments were undertaken, and the role, if any, undertaken by general practitioners / primary care physicians. The time-scale between noticing problems and receiving a diagnosis is explored. A section follows on how, if at all, the diagnosis was disclosed, and the reactions of the person with dementia and carer at the time and subsequently. The carer is asked to comment on the information, support and treatment offered and provided following the diagnosis, highlighting where more information may have been helpful. The carers’ views as to the timeliness of the diagnosis and of reasons for any delay in the process are sought. The survey concludes with questions regarding social attitudes to dementia and stigma, and the extent to which the carer experiences the community as ‘dementia friendly’. The results of the survey indicate important similarities and differences between countries, and highlight areas for further development.

This project is supported by an educational grant to Alzheimer Europe from Roche.

PL2.4. The PACE project and its implications for palliative care for people with dementia

VAN DEN BLOCK LIEVE, on behalf of PACE (

Many older people and people with dementia in particular require nursing home care in the final phase of life. PACE is an EU funded project (2014-2019) comparing the quality of end-of-life care and quality of dying of people dying in long-term care facilities (nursing/care homes) in six EU countries (study I), and evaluating the impact of the “PACE Steps to Success” intervention on resident and staff outcomes, an intervention aimed at integrating palliative care for all residents living in these facilities (study II).

In the first PACE study (2015), we identified 1707 deceased residents in 322 facilities, representative for six countries (Belgium, England, Italy, Finland, Poland, the Netherlands). The countries varied considerably in terms of populations, length of stay, financing and regulatory mechanisms, as well as in terms of palliative care development in these settings. Between 60% and 83% of deceased residents were estimated to have dementia at the end of life, of which about half had advanced dementia. A significant number of residents died with burdensome physical symptoms according to the nurses, and this in all countries.

Additionally, we conducted a cross-sectional study of 2275 staff members in these facilities to evaluate staff knowledge regarding palliative care. Results showed that knowledge of nurses and care assistants concerning basic end-of-life issues can be improved in all countries although there are large cross-country variations. Poland and Italy scored considerably lower in knowledge than the other countries.

The “PACE Steps to Success intervention” is currently running in 39 nursing/care homes in seven countries (Belgium, England, Italy, Finland, Poland, the Netherlands and Switzerland) as part of a cluster randomised controlled trial. It consists of the systematic implementation of six steps: 1) advance care planning, 2) assessment and review, 3) coordination of care, 4) high-quality care and symptom management, 5) care in the last days of life, and 6) care after death. At the core of the intervention is the nomination of PACE coordinators in each facility operating as key champions for the implementation of the intervention. The implementation of such a complex multi-layered intervention is found to be highly challenging.

In conclusion, the provision of high-quality palliative care should be a main priority for nursing and care homes in Europe. Considering the large number of residents developing dementia, the integration of high-quality palliative care with high-quality dementia care is essential. Even though there are differences between countries, there is room for improvement in all countries and educational strategies should be tailored to the specific country needs.






Last Updated: Monday 23 October 2017


  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche