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P1. Policies and strategies: Dementia strategies

Detailed programme, abstracts and presentations

P1.1. Leadership in strategy implementation: The role of a national dementia office

DE SIÚN Anna, MANNING Mary, BEGLEY Emer

National Dementia Office, Health Service Executive, Tullamore, Ireland

Background: Leadership was identified as a Priority Action Area in the Irish National Dementia Strategy, with a commitment that “clear and effective management structures will be established within the Health Service Executive to provide leadership at a system level for the implementation of the Strategy” (p.35). The National Dementia Office was established in 2015 to fulfil this commitment.

Structure and Function of the National Dementia Office: The National Dementia Office (NDO) is led by a person at Senior Management level, and became fully staffed with two full-time Senior Project Managers and a part-time Clinical Lead in 2017. The NDO oversee and drive the implementation of the National Dementia Strategy (NDS). The dementia specific remit of the NDO allows the office to collect baseline information on dementia service structures across a range of care areas and to generate an evidence base for the development of services and concept feasibility testing.

Strength of the NDO is its remit to work with public, voluntary and private providers. By creating and developing relationships with a broad range of stakeholders, the NDO is uniquely placed to ensure integration of all aspects of the NDS and maximisation of best practice initiatives nationally. The NDO also negotiate for the reallocation of existing resources, and bid for funding through existing Department of Health funding processes.

Conclusion: The establishment of a National Dementia Office has been a critical element in the implementation of the Irish National Dementia Strategy. The work of the office has highlighted the necessity of a single entity to bring together the various work streams and stakeholder groups, to generate the information and evidence base necessary to develop services and supports, and to ensure dementia remains a priority focus within a climate of competing funding interests.

P1.2. A strategy for better care for people living with YOD

VAN DE KAMP Judith, VAN KEMPEN Thed

Knowledge Centre YOD, Amersfoort, Netherlands

The needs of people living with Young Onset Dementia (YOD) have proven to differ substantially from those of elderly people living with dementia. However, it has remained quite a challenge for health care institutions in The Netherlands to adapt their services to these specific needs of people living with YOD. In order to improve the care and support for people living with YOD in The Netherlands, as well as for their relatives such as partners and children, a group of Dutch health care professionals from various health care institutions founded the Knowledge Centre for Young Onset Dementia (Knowledge Centre YOD), back in 2003.

Today, the Knowledge Centre YOD (www.KCdementieopjongeleeftijd.nl) has grown into a national organization in which 30 Dutch health care institutions are involved. Additionally, five academic research centres (a.o. Alzheimer Centres) linked to the University Medical Centres are members of the Knowledge Centres YOD, as well as other organizations such as Alzheimer Nederland. All member organizations work towards the improvement of care and support for people living with YOD and their relatives, by actively contributing to one (or several) of our five key elements of work. These five elements are: 1) active enhancement of the quality of care, 2) the development of expertise among health care professionals, 3) lobby and advocacy, 4) promoting and facilitating scientific research, and 5) improving the accessibility of services nationwide. In our presentation at the Alzheimer Europe Conference in 2018, we will elaborate on the mission and strategy of the Knowledge Centres YOD in The Netherlands, as a means to inspire other European organizations to improve the care and support for people living with YOD.

P1.3. Dementia policy - dementia policies: lessons from Switzerland

SGIER Lea, LUCAS Barbara, HURST Samia, GURAU Ana

University of Applied Sciences and Arts Western Switzerland, Geneva, Switzerland

Our presentation focuses on first results from an ongoing research project funded by the Swiss National Science Foundation (2017-21) on the diversity of dementia policies in Switzerland. Switzerland’s first National Dementia Strategy (2014-19) charges the 26 cantons with the implementation of a dementia strategy structured around four priorities. Four years into the implementation phase, the cantons have opted for very different governance models for their cantonal dementia policy, from proactive policies actively shaped and driven by cantonal authorities, to more passive coordination models and various  models of delegation to the associative sector; they have set different foci,  for example on early diagnosis or on support for informal carers; they position dementia policy at different points of intersection between the health and the care sector; and they have defined dementia policy in various ways, some more specific (dementia policy proper), some more transversal (as  part of old age or health policy more generally).

These differences have concrete implications for people with dementia and their carers, regarding for instance access to diagnosis and medical care, the availability of post-diagnostic support services, the availability of dementia-trained care personnel, or the way ethical dilemmas affecting them (such as the right to know vs the right not to know, or the usefulness vs potential harm of getting diagnosed with an incurable illness) will be handled. As we will show, this cantonal policy diversity is of interest well beyond the Swiss context, in that it makes the connection between policy and people’s lives tangible, hences draws attention to the importance of policy (and politics) for people’s concrete margins of action.

P1.4. Implementation of the Austrian Dementia Strategy "Living well with Dementia"

SCHRANK Sabine

Federal Ministry of Labour, Social Affairs, Health and Consumer Protection, Vienna, Austria

On behalf of the Ministry of Social Affairs and Health the Austrian Dementia Strategy “Living well with Dementia” was developed in 2015. The results underwent a comprehensive online consultation process, where about 600 responses from all relevant stakeholders contributed to the further development of the Strategy. The Austrian Dementia Strategy provides a framework of objectives and recommendations for taking action to improve the lives of people with dementia as well as their families and carers. As the next step the implementation process of the Strategy started in 2016. All stakeholders are invited to work in their area of responsibility to contribute to the success of the Strategy, to develop better understanding of dementia and to defeat the stigma attached to it.

Especially caregiving relatives of people with dementia are considerably exposed to multiple responsibilities – depending on the progress of the disease, which is mentally and physically particularly stressful. To strengthen and support the position of people with dementia as well as their caregiving relatives the Ministry of Social Affairs supports through numerous measures. In order to gain more knowledge about this specific group and for the further development of the Austrian long-term care system a study is currently carried out on the prevalence and situation of caregiving relatives (especially taken into consideration caregiving relatives of people with dementia) on behalf of the Ministry of Social Affairs. The study is based on a representative quantitative survey (n=11.500) as well as over 40 qualitative interviews. 

The presentation will highlight current measurements to support and strengthen people with dementia as well as their caregiving relatives (e.g. hardship supplement long-term care allowance, care leave benefits, substitute care and free counselling sessions/home visits) and will furthermore present results of the study on the situation of caregiving relatives in Austria. 

P1.5. Adult with intellectual disabilites included in national dementia plans and guidelines

LARSEN Frode Kibsgaard1, LANGBALLE Ellen Melbye2

1Vestfold Hospital Trust, Tønsberg, Norway, 2Oslo University Hospital, Oslo, Norway

The number of elderly with intellectual disabilities (ID) will increase significantly, and more people with ID will experience dementia in the future. People with Down’s syndrome has a particulary high risk for early-onset dementia. The World Health Organization (WHO) has requested the member countries to develop and adapt national plans to guide public policy and set goals for services, supports, and research related to dementia. WHO have emphasized that distinct population, as adult with ID, should be included within national plans. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans. Reviews of national plans and reports on dementia show minimal consideration of ID. Norway is one of the few countries in the world that have included adult with ID both in a national plan on dementia and in a national guidline on dementia. Our center, Norwegian National Advisory Unit on Ageing and Health, in cooperation with disciplines across service locations, the specialist health care services, municipalities and NGO’s, have a central role in the work with the national dementia plan and the guideline on dementia. This presentation will use Norway as an narrative to present this process and how adult with ID is included within the national plan and guideline on dementia.

P1.6. Towards a dementia care registry: lessons learned from a record linkage project

JOLING Karlijn1, FRANCKE Anneke1,2, DÖPP Carola2, JANSEN Daniëlle2, VAN HOUT Hein1, VERHEIJ Robert2

1VU medical center Amsterdam, Amsterdam, Netherlands, 2Netherlands institute for health services research (NIVEL) Utrecht, Netherlands

Persons with dementia and their family often move through a long care trajectory, from first symptoms of dementia until death. Identifying patterns in the use of health care resources and services during the care trajectory, and gaining insight into regional differences is important to identify ‘best practices’. This could facilitate care providers to learn from each other and thus contribute to the improvement of the quality of dementia care against reasonable costs. To this end, data routinely recorded by health care professionals need to be available, linkable and of sufficient quality.

This project aimed to link routinely recorded data from different sources, and identify the prerequisites to set up a registry that allows the analysis of dementia care trajectories. Data from electronic health records of >400 general practices and registries of 18 regional dementia care networks were used and linked at individual level with population-based sociodemographic and administrative health data in The Netherlands. We present the lessons learned regarding the identification and selection of necessary data sources, the privacy and governance issues involved, and the technical challenges in data extraction and data linkage.

We found that relevant information about care trajectories of people with dementia is available in the routinely recorded data sources and appeared to be linkable at individual level. The weakest link in this chain of data is the quality and comparability of data recorded in the dementia care networks. Their registrations vary substantially and lack structured information about clinical, psychological and functional aspects. Nevertheless, it is still possible to extract relevant longitudinal information related to the quality and costs of dementia care trajectories, without setting up new data collections. These findings will be used for the development of a national dementia registry, which is part of the Dutch national dementia strategy.

 

 
 

Last Updated: Tuesday 13 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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