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P17. National dementia strategies

Detailed programme and abstracts

P17.1. Introducing Germany's National Strategy on Dementia

DAHL Nils

Federal Ministry of Health, Bonn, Germany

The presentation intends to introduce Germany’s national strategy on dementia which was developed between 2019 and 2020. Governmental actors of different policy areas and of all administrative levels, as well as over 50 relevant organisations and interest groups were involved in the process of drafting the strategy. Four priority fields of action were identified: 1) building dementia-inclusive communities by strengthening structures that enable the social participation of people with dementia, 2) improving support for persons living with dementia and their family caregivers, 3) improving medical care, nursing care and long-term care for people with dementia, and 4) promoting research, innovation and collaboration to increase our knowledge on the prevention and therapy of dementia.

All involved actors agreed on 27 goals and 162 measures to substantially improve the situation and living conditions of persons with dementia and their families. Therefore, many measures focus on enhancing the quality of everyday life in their communities and the quality of care in various care settings.

The implementation of the strategy will be monitored to ensure sustainable improvements and to allow necessary adaptations to new challenges such as the current COVID-19 pandemic. The strategy’s goals are interlinked with other governmental strategies such as the so-called "Concerted Action on Care” ("Konzertierte Aktion Pflege" or KAP) which was signed in 2019 to improve schooling and working conditions for professional care workers in Germany.

The presentation will thus share the experience of developing a national dementia plan, discuss examples of the strategy’s goals or particular measures, and enhance the exchange of experiences between countries that have already implemented their individual strategy or that plan similar steps in the future.

P17.2. Development of an Irish Dementia Registry including the identification of outcomes and data that matter most

HOPPER Louise, BOWEN Christina

Dublin City University, Dublin, Ireland

Under the National Dementia Strategy, there is a commitment to improve and increase the evidence we have on dementia in Ireland. This data can improve dementia care management and outcomes for people living with the condition. To support this, the National Dementia Office, through the Department of Health, secured Dormant Account funding for a project to develop a model for a national dementia registry that is workable within an Irish context.  This is a summary of the key findings from the project which was co-designed with the active and meaningful involvement of a diverse range of stakeholders including people with dementia and their family caregivers, clinicians, and those with expertise in health informatics, information technology and patient registries.  Through a series of co-design workshops, key outcome measures emerged and agreement was reached on those that mattered most to people with dementia and those who care for them.  These included a focus on the dementia diagnostic process (currently not standardised in Ireland), overall quality of life and wellbeing of the person with dementia and of their primary caregiver, and monitoring the use of antipsychotic and dementia medication.  These outcome measures assisted in the development of a minimum dataset, containing three broad categories of data: Personal Characteristics, Diagnostic data, and Treatment and Care. The Irish system currently has fragmented dementia data that is mostly in paper format or in unconnected systems. This makes retrieval currently difficult. Collecting data in a standardised way through a web based registry application, which is modular and extendable to allow for integration with other health systems over time is essential to track meaningfully outcomes that will drive change, provide a foundation for quality enhancement and add value to our health system and most importantly, to people with dementia living in Ireland.

P17.3. Finnish Age Strategy promotes implementation of memory- friendly practices

VILJAMAA Seija1, HAMMAR Teija2

1Ministry of Social Affairs and Health, Helsinki, Finland, 2National Institute for Health and Welfare, Helsinki, Finland

Background: The population of Finland is rapidly ageing. The share of over-65-year-olds will increase from the current 20 percent to 26 percent by 2030. As the population ages, the number of people with memory disorders is also increasing. Approximately 190,000 persons have some form of memory disorder and over 13,000 are diagnosed with a dementing disease yearly.

Ageing Policy: The Finnish ageing policy promotes older people’s functional capacity, independent living and active participation. The reform of ageing policy and service structures aims to enable older people to continue living at home, even until the end of their lives. The focus of the Government Programme is promoting health and wellbeing, and the memory disorders are recognized as well as other chronic diseases.

The impact targets of the national Age Strategy for 2030:

  • Functional capacity of working age people is improved and working careers are extended.
  • Older people maintain their functional capacity longer.
  • Voluntary work has an established role in society.
  • Digitalization and new technologies have improved wellbeing.
  • Service system is non-discriminating, coordinated and cost-effective.
  • Housing and living environments are age-friendly.

Towards a Memory-Friendly Finland: The national Memory Programme (2012-2020) aims to support people with memory-related diseases to live their lives as active members of the society according to their own capacity, abilities and resources.  It includes four main areas:

  • promoting brain health
  • fostering open attitude towards brain health, treatment of dementing diseases and rehabilitation
  • ensuring quality of life
  • increasing research and education.

Many actions have become part of practices and activities in the life of person’s with dementia. The implementation, including new practices like Finger model, continues in social and healthcare reform and the Age Strategy. Specific care guidelines, the Elderly Care Act and the Quality Recommendations for older people services also support the quality of life of people with dementia.

P17.4. Dementia as public health priority - current trends and best practice Austria

RAPPOLD Elisabeth

Gesundheit Österreich GmbH (Austrian Public Health Institute), Wien, Austria

In 2012, the WHO and Alzheimer's Disease International called on Member States' governments to recognize dementia as a focus of health policy. The Austrian government included the development of a dementia strategy in its government program 2013-2018. As a result, the Austrian dementia strategy "Living well with dementia" has been developed in a participatory process.

In this presentation will focus on three results on national level: 

Orientation guide for hospitals: For people with dementia staying in a hospital is a difficult and frightening situation. They can be destabilized by a change of location, such as admission to a hospital. The orientation guide shows measures that enable hospitalization for patients with dementia as free of friction as possible.

Orientation guide for nursing homes: People with dementia represent the largest group of nursing home residents. In order to ensure a good life with dementia there, structures, processes, processes and environmental factors have to be adapted to the needs of people with dementia. The aim of this orientation guide is to support and accompany people with dementia to maintain quality of life, skills and abilities and self-determination despite impairments.

Both orientation guides were developed on the basis of literature and experts. For the systematic presentation of the recommendations, the SPACE system developed in England was used. Their aspects are: »Staff »Partnership »Assessment »Care »Environment. We expanded the criteria by “Dementia Governance”.

Orientation guide for media:  The current image of people with dementia, in the public perception mainly focuses on the advanced stages of the disease or life with high care needs in nursing home. This should be brought into the right light.  he guide includes do’s and dont’s both for written reporting and image reporting. Regardless of the type of reporting, it is important to act in an appreciative and strength-oriented manner.

P17.5. Building the dementia pathway

TERRY Gavin

Alzheimer's Society UK, London, United Kingdom

At Alzheimer’s Society, we campaign for better care, support and system reform, knowing from people affected by dementia the number of issues they face in their fight against the disease. This includes hurdles at various points of the dementia pathway. From diagnosis to death, people are navigating a disjointed system that fundamentally doesn’t work as well for them as it does for people with other conditions. People with dementia and their families are left to fight for the care to which they are entitled, whether it meets their needs or not.

While research continues to strive for a cure in the future, treatments and models of care to support people in the shorter term, this does not negate the need to take action and focus on what needs to be done now; stopping people falling through the gaps in the current system and improving quality of life.

Our report forms the first output of a long-term project we are undertaking on the dementia pathway. It uses people’s experiences to identify the gaps in what care people are receiving, benchmarked against current national policy.

We take the five stages of NHS England’s Well Pathway for Dementia; Preventing Well, Diagnosing Well, Supporting Well, Living Well and Dying Well, and explore in detail what NICE and the government say people should be receiving at each stage, and therefore the care and support they say will enable people to live well with the condition. We benchmark this against the experiences of people affected by dementia. 

We have brought to light the particular challenges people face in accessing effective care and support, from diagnosis to death. Each gap identified within the pathway is as important as the next, as each type of support can impact, both positively and negatively, the rest of a person’s pathway.

 

 
 

Last Updated: Tuesday 01 September 2020

 

 
  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche
 
 

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