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Development and involvement

Development and implementation

Across the strategies, there was a common theme which emphasised the importance of ensuring that people with dementia, their families and carers are involved in the decision-making process in relation to their own care, as well as the planning and delivery of services, and the development of policy. Despite this, it was not evident that all strategies had followed this process of involvement throughout their development.

Steering committees

The majority of strategies provide a breakdown of the members of the steering committees/working groups which had overseen the drafting of the national strategy. This invariably included members of the government (primarily though not exclusively from the health departments), clinicians, academics, service providers, and, in every case, the relevant Alzheimer’s Association(s). However, fewer than a quarter of the strategies contained more information beyond the make-up of the steering committee, so it is difficult to establish the extent to which the views of people with dementia were used to shape the direction of the strategy.

Workshops/dialogue events

A small number of strategies articulated an approach of holding workshops or events to gather the lived experience of people with dementia and carers, including Austria, Denmark, Luxembourg, Norway and Scotland. Northern Ireland’s strategy notes a specifically commissioned piece of research from the Alzheimer’s Society which was used to inform the direction of the strategy. From these strategies, there appeared to be a mix between organisations which involved people with dementia and their carers separately, and those which involved them alongside a broader audience (including academics, clinicians, care providers etc.). Denmark and Malta were notable for the focus on engaging service providers as part of the development of their strategies.

In addition, a number of other strategies (including Austria, Denmark, Malta, Portugal and Scotland) also set out broader public consultations which allowed for input from any interested parties (including members of the public, professionals, service providers and other organisations) to contribute to the development of the strategy.

As such, we can see some level of consistency in terms of clinical, governmental and professional involvement in the development of dementia strategies. It was pleasing to see that Alzheimer’s organisations were involved in the process of developing the strategies, especially in countries where people with dementia, their families and carers had not been directly involved in the process.



Last Updated: Monday 29 April 2019


  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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