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Including best practices and the voices of experience in developing post-diagnostic dementia support guidelines for people with an intellectual disability

To develop accessible best practice guidelines for post-diagnostic dementia supports for people with an intellectual disability in Ireland. The project aims to:

(1) examine the current landscape of post-diagnostic care at a national level;

(2) consider barriers to access;

(3) incorporate existing best practices; and

(4) give due consideration of the experiences and recommendations of people with an intellectual disability living with dementia and of their families/carers.

Valuing Psychosocial Care in Dementia

This research project focuses on how person-centred, non-pharmacological approaches to care are valued in dementia and a contingent valuation approach will be used to examine preferences and values from citizens with respect to alternative types of care. The research also involves creating a taxonomy of psychosocial supports in dementia care in Ireland, including the evaluation of a number of psychosocial interventions including Alzheimer Cafés.

Economics of Informal Care for People with Dementia

This research programme focuses on the economic, social, health and emotional costs of caring for people with dementia. The research will provide longitudinal estimates of the relationships between informal care costs and cognitive function, comorbidities and behavioural changes in people with dementia, including an exploration of the potential of psychosocial interventions and technology-based interventions for care-givers to ameliorate the potential burden of care.

An Exploration of Personhood in Dementia in Formal Care in Ireland

This project examined personhood in dementia within formal care provision and relationships in Ireland. The concept of personhood within the context of formal care was examined through three different lenses: formal care policy, formal care settings and formal care relationships. Each lens provides different insights and perspectives into personhood in dementia and at both the macro and micro level of formal care provision. The central research question was: How is personhood in dementia conceptualised, expressed, facilitated and actualised in formal care in Ireland?

Research for Dementia and Home Design in Ireland: Looking at New Build and Retro-Fit Homes from a Universal Design Approach Key Findings and Recommendations.

Project Aim(s): This study on dementia and home design in Ireland was undertaken to inform the development of Universal Design Guidelines for Dementia Friendly Dwellings produced by the Centre for Excellence in Universal Design at the National Disability Authority in 2015. The study included an extensive scoping review of the literature, stakeholder engagement, and case studies of dwellings designed for people with dementia.

A Systematic Review of the Public’s Knowledge and Understanding of Alzheimer’s Disease and Dementia.

Project Aim(s): This paper reports findings from a systematic review of the literature on the general public’s knowledge and understanding of dementia/Alzheimer’s disease. The key purpose of the review was to evaluate existing literature with specific attention paid to conceptual and methodological issues and to key findings. Over a 20-year period, 40 published articles satisfied the inclusion criteria. Only 4 of these were qualitative and 5 were cross-national.

A National Survey of Memory Clinics in the Republic of Ireland.

Project Aim(s):  This national survey investigates the location, resourcing, staff composition, treatments, waiting time, and numbers of patients attending memory clinics (MCs) in the Republic of Ireland. It also explores Directors’ attitudes to future service development including their views about the advantages and disadvantages of quality standards for MCs.

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