Supporting People with dementia

In this section you will find a variety of reports under the general theme of supporting people with dementia and a number of reports that fit within the sub headings of pharmacological approaches; acute care; end of life care; dementia friendly communities; and housing, the built environment and ICT. Currently almost all of the reports in this section from RoI have been produced by the Genio Dementia programme. A number of reports are included from the Dementia Together programme and Access, Research, Knowledge (ARK) in Northern Ireland.

MARIO project: A multicenter survey about companion robot acceptability in caregivers of patients with dementia

Sancarlo, D., D’Onofrio, G., Oscar, J., Ricciardi, F., Casey, D., Murphy, K., Giuliani, F. and Greco, A.
Sancario (2017) set out to determine the needs and preferences of caregivers in improving assistance for people with dementia.
They showed caregivers a six minute video on technology devices and then asked them to complete a questionnaire, exploring acceptability, functionality, support devices and impact. The team’s objective is that MARIO will help address loneliness and isolation for people with dementia and the robot uses technology that tries to create real feelings so that it might be easier for the person with dementia to accept help from a robot. Over 64% of caregivers regarded MARIO as useful or moderately useful in improving quality of life. Caregivers prioritised robot acceptability, recording as important or very important items such as the robot having a human like appearance, a familiar voice and being able to display emotional expression. They also rated highly items relating to functionality such as face and voice recognition. The authors emphasise the value of stakeholder involvement in the development of such technologies.

Learning Paper on Dementia and Risk

Clarke, C.
This learning paper from Genio describes current challenges of risk assessment and risk management in dementia care and draws on the contributions of participants in a workshop organised by Genio. It is divided into two parts: understanding risk; and positive risk-taking and quality of life.
In the first part, it explores the concepts of risk, both from objective and subjective perspectives and distinguishes it from harm. Where risk is located is important, and the paper argues that by managing environments rather than seeing people as inherently problematic, people with dementia can be supported to take risks that enhance their quality of life. The paper groups the risks and associated dilemmas that people with dementia have under five headings: harms, self-neglect and antecedent activities; vulnerability to the action of other people; stigma and being socially isolated/excluded; lack of continuity of usual activities; and carer unable to sustain caring. The paper promotes a risk enabling approach which offers the opportunity to attend to safety, welfare and quality of life. It offers different ways of working with risk. It also looks at what are referred to as ‘silent harms’ and how they might be prevented. It sets outs principles that can be followed by practitioners in accessing risk, and reminds us that this is just one part of the cycle of risk management. Finally, it outlines risk assessment frameworks that can be used in practice accompanied by examples.

Dementia consortia: integrated networks to deliver individualised supports for people with dementia and their family carers (2016)

Keogh, F., Howard, E., Maguire, M. and de Siun, A
This is a learning paper produced by Genio to introduce, explain and describe the concept of dementia consortia.
The paper draws on the experience and learning of dementia consortia established in Ireland under the HSE & Genio dementia programme, to inform the further development of integrated working in the area of dementia in Ireland. The paper presents a case for a coordinated, inclusive approach to developing individualised dementia services and supports which include a wide range of organisations and agencies, referred to as a Dementia Consortium. It describes what a dementia consortium is, how it differs from other committees, and describes the 12 dementia consortia developed in Ireland under the HSE & Genio Dementia Programme. The paper explains who is in a dementia consortium, outlines the steps to establish a consortium, and discusses what facilitates the successful working of a consortium and considers the sustainability of a consortium.

Discussion Paper on Evaluating Arts-based Programmes for People with Dementia, and their Impact on Wellbeing

Devine, P. and Lloyd, K.
Access, Research, Knowledge (ARK)
In response to an increasing interest in the concept of wellbeing and a shift towards outcomes-focused evaluations, this discussion paper was undertaken by Devine and Lloyd (2015) to highlight key issues related to evaluating the outcomes of an arts-based intervention/programme for people with demen
tia, with a particular focus on the wellbeing of participants. It defines what evaluation is, distinguishes between different evaluation methods and explains key issues in the evaluation design, The paper reviews three main questionnaires that have been developed to measure wellbeing in adults and the disadvantages of using questionnaires. It identifies other methods that can be used to gather information on wellbeing including research interviews, focus groups, diaries and participant observation and key points that need to be considered when evaluating the impact of a programme on wellbeing. With regard to measuring the impact of interventions/programmes with people with dementia, the paper highlights the complexity of this, quality of life measures that have been developed to do this, and the range of approaches aimed at enabling people with dementia to participate in evaluation. The paper then presents six case studies of outcomes-focused evaluations of interventions/programmes for people with dementia, three of which are arts-based programmes. The paper also includes a lit of useful resources.

Excess winter deaths among people living with Alzheimer’s Disease or related dementias.

Gray, B., Allison, S.,Thomas, B., Morris, C., and Liddell, C.
Chesshire Lehmann Report
This report analyses the findings from a study that aimed to understand the causal pathways connecting dementia and Alzheimer's disease with the risk of excess winter mortality. An analysis of mortality data across the UK is coupled with insights from carers of people with dementia.
The study finds that excess winter deaths among people with dementia is a long standing phenomenon and supports previous literature suggesting winter adds an additional risk to many other risks for people with dementia. The authors refer to the "perfect storm" of risks that can accumulate over time. A list of recommendations is categorised by carer, future research, utility providers and organisations supporting people with dementia. A paper on this study can also be found in the journal section of this review.

Domiciliary Care in Northern Ireland: A Report of the Commissioner's Summit

Commissioner for Older People for Northern Ireland
Commissioner for Older People for Northern Ireland
This report provides comprehensive documentary on domiciliary care in Northern Ireland for older people, including costs, commissioning, workforce issues, a review of standards and inspection and the regulatory framework.
A section of the report is specific to dementia and points to the lack of dementia-specific standards within domiciliary care. Reference is made to the need for domiciliary care to support the ministerial commitment to enable people with dementia to remain independent in their own home environment for as long as is possible. The Commissioner recommends the creation of Dementia specific standards and that user experiences are included in inspection processes.

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.