Genio Dementia Series: No. 3 Briefing Paper on Dementia Diagnosis

This briefing paper is part of a series of papers that has been commissioned by Genio to provide accessible overviews of key areas relating to the development of dementia services. The paper explores the diagnosis of dementia; what the current practice is in Ireland; a description of common standardised instruments for cognitive assessment; an overview of practices in other parts of the world and based on the evidence, some actions for consideration.

Briefing Paper on Dementia Advisors

Briefing Paper on Dementia Advisors

The paper explores the Dementia Advisor Role which focuses on the provision of information to people with dementia and their carers, the signposting of the dementia journey and the provision of support on that journey. The evidence relating to the role of Dementia Advisors in other jurisdictions is provided, with an exploration of the impact of these roles on the person with dementia, carers and the health and social care system. The paper also describes some of the functions and tasks undertaken by the role and the learning which has resulted from the use of Dementia Advisors within both the international and Irish context. This paper was submitted to the Working Group developing the Irish National Dementia Strategy.

Preliminary evidence does support the development of dementia advisor roles an efficient way of providing the information and support to people with dementia and their families and carers, and the following key points emerged as pivotal to effective implemenation of such a role;

  • Defining the role can be difficult as it is unclear what components need to be present to ensure it is as efficient and effective as possible.
  • Integral to the role of the dementia advisor is the need to build strong linkages with statutory, voluntary and private health and social care providers.
  • To facilitate this process there is a need for a clear definition of the role so as to avoid confusion and duplication of effort and ensure appropriate referrals can be made from multiple sources. 
  • In order to provide a service that is tailored to the individual needs of its clients there is clearly also a need for flexibility within the role. 
  • Dementia advisor roles cannot be developed in isolation but need to be part of the innovative development of dementia care in Ireland today, acting as a bridge for the person with dementia to find the support and information they need at each point in their journey.

Intellectual Disability Advocacy Initiative: Scoping Study

In the course of the work that Genio has conducted over the last number of years it has become clear that there is a need for the establishment of a National Intellectual Disability Advocacy Initiative that would strengthen the voice of those with intellectual disabilities. Such an initiative could include independent citizens who may be involved in helping to represent the interests of those whose capacity precludes them from speaking on their own behalf.

Genio commissioned a scoping study to identify the best approach to developing such an initiative. The key tasks of the scoping study were to describe the key features of a National Intellectual Disability Advocacy Initiative and outline an appropriate approach to developing such an initiative based on a clear identification of strengths that could be built upon in an Irish context, and learning from other countries.

Drawing on important insights from the literature review including desk research on established self-advocacy models in other jurisdictions and the consultative meetings with key stakeholders and informants, the paper identifies important elements to feature in such an advocacy initiative.

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