Supporting People with dementia

This section includes a review of five reports from ROI that are related to the general theme of support for people with dementia. Three of the reports relate to the evaluation of the Genio Dementia Progamme, which began in 2011. Supported by The Atlantic Philanthropies and the Health Service Executive (HSE), the Genio Dementia Programme supports the development and testing of new service models aimed at improving the range and quality of community based support for people with dementia, influencing policy and investment in the area of dementia and building leadership in the field. The first four regional projects focused on community-based models of support. Two new project streams were introduced in 2013: integrated care pathways in the acute hospital sector; and individualised supports in the community for people with dementia. The review below includes three evaluations from the Genio Dementia Programme. Also included in this opening section are a briefing paper on dementia advisors, an evaluation of the impact of the Azure project on inclusion of people with dementia in museums and galleries, and a book chapter on supporting people with dementia and an intellectual disability in a traditional intellectual disability service through an in place progression model. The theme of psycho-social approaches is one that runs through these reports. The section is also sub-divided according to the following: pharmacological approaches; acute care; end of life care; dementia friendly communities; and housing, the built environment and ICT. 

Genio Dementia Programme: Evaluation End of Year 1

O’Shea, Murphy, E
Irish Centre for Social Gerontology

This report by O’Shea and Murphy (2014) examines the workings of the Genio Dementia Programme at the end of its first year. The report is based on information provided by Genio, visits to the project sites and meetings with key personnel, and a structured questionnaire completed by each site.

The report outlines key learning outcomes in relation to public awareness, diagnosis, community-based supports, and integrated provision. It considers issues around sustainability and reflects on the implications for public policy.

An Evaluation Report on the Dementia Support Worker Initiative of the 5 Steps to Living Well with Dementia in South Tipperary Project

CAHILL, S., PIERCE, M., Bobersky, A.
Living Well with Dementia

This report published by Trinity College Dublin and Genio Ltd describes an evaluation of a new model of respite developed and offered by 5 Steps to Living Well with Dementia in South Tipperary, one of the Genio Dementia Project sites.

The initiative focused on providing individualised supports to people with dementia and their family carers, which were delivered by Dementia Support Workers. The evaluation, which was carried out when the Dementia Support Worker Initiative was in its early stages, drew largely on qualitative interview with eight people with dementia and twelve family carers availing of the supports, and was supplemented by quantitative data to explore the experiences and impact of the initiative on people with dementia and their family carers. 

An Evaluation Report on Flexible Respite Options of the Living Well with Dementia Project in Stillorgan and Blackrock

CAHILL, S., PIERCE, M., Bobersky, A.
Dementia Project

This report published by Trinity College Dublin and Genio describes an evaluation of an initiative of the Living Well with Dementia Project in Stillorgan and Blackrock in Dublin, one of the Genio Dementia Project sites.

Following consultation with the community, the project developed community-based supports designed to meet the needs of both the people with dementia and their family carers. One of the supports was a community-based activity/exercise programme and this is the subject of this report, which evaluates the programme based on the experiences of people with dementia and their family carers attending the programme.  

Briefing Paper on Dementia Advisors

De Siún, A.

De Siún (2013) takes the reader through several countries, their national dementia strategies and the varying ways in which the dementia advisor role has taken shape in these countries, along with their key responsibilities and supporting structures.

It then moves to ROI and describes the situation with respect to dementia advisors in 2013, where advisors were found to take a mixed approach, that access to services differs significantly across regions and that they are more often dealing with families and carers than the person with dementia. Finally, the briefing paper reviews the research evidence on dementia advisors.

Responding to the challenges of service development to address dementia needs for people with an intellectual disability and caregivers

MCCARRON, M., MCCALLION, P., Reilly, E. and Mulryan, N.
Jessica Kingsley Publishers

This book chapter by McCarron et al (2014) is included in a book edited by Karen Watchman addressing the association between intellectual disability and dementia; the experiences of dementia in people with intellectual disabilities; and service planning. This book chapter pertains to the latter.

It acknowledges the challenges faced by traditional intellectual disability services and explains the approach adopted by one such service in ROI to supporting and accommodating people with an intellectual disability who develop dementia. It exemplifies the move to an in place progression model in traditional intellectual disability services, whereby services are adapted so that people with an intellectual disability can be supported and accommodated as they progress through dementia. 

Exploring Greater Inclusion of People with Dementia in Museums and Galleries in Ireland: Pilot Evaluation 2012

Age and Opportunity

The Azure Pilot Programme based in ROI was developed to involve people with dementia and their carers (formal and informal) in facilitated discussions about artwork.

This evaluation (Azure, 2012) of the programme set out to: (1) document the first Azure programme at the Butler Gallery from the perspectives of those involved; (2) assess what elements worked well and what ones did not; and (3) outline the kinds of issues that need to be considered in organizing a project of this kind with a view to informing the future development of the programme. The programme was found to have been a very positive experience for everyone involved. It evaluated and made recommendations around several different aspects of the programme including recruitment, choice of venue and artwork, staff training, set-up and social aspect, bookings and participant information, facilitated sessions, facilitation skills, pre-existing groups, and steering group. The evaluation report concluded that the programme had tremendous potential.