Learning Paper

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 National Dementia Strategy to inform the strategy and highlights the following key points;

• Preliminary evidence supports the development of dementia advisor roles an efficient way of providing the information and support to people with dementia and their families and carers. 
• 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.
   

In the course of the work that Genio has conducted, 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.

The following key points emerged from the study;

• In exploring the wider context of self-advocacy, it is seen how claiming one’s voice has been shown, in other arenas, not just to have a profound effect on the individual but on services and the wider system.
• A number of policy and legislative changes, both recent and anticipated, have the potential to reframe current disability policy towards a system of supports that enable active citizenship and independence – including a system of individualised funding to underpin the provision of supports and to provide greater control and choice to the person and their family.
• The establishment of such an initiative will need to be catalysed by a combination of activists and funders while setting specific targets for the achievement of the endorsement, engagement and active participation of people with an intellectual disability.
• The leadership of the initiative should transition within this timeframe to a board comprising up to ten people with intellectual disabilities, supported by independent “allies” whose sole role is to support them in achieving their goals.
• Once formed it could be prudent, in its early years, for the advocacy initiative to seek a hosting arrangement with an established organisation to provide administrative and other organisational supports while it is focusing on establishing its mission, membership and profile.