Search

Users may use the search function to find links to journals, books, policy papers and surveys and databases related to dementia in the Republic of Ireland and Northern Ireland. Users can search by keyword or theme and then use filters to refine results by content type, year and themes.

Dementia 2012: A National Challenge

Lakey, L., Chandaria, K., Quince, C., Kane, M., Saunders, T.
Alzheimer’s Society (UK)
2012

This is the first in a series of annual reports produced by the Alzheimer’s Society (UK) examining how well people with dementia are living in England, Wales and NI.

Findings of the report are based on a questionnaire distributed to people living with dementia and a YouGov poll of the general public. The report found that only 22% of people living with dementia said that they are living very well with dementia and only 7% of the general public perceive people with dementia to have either a very good or fairly good quality of life. The report targets five key areas in its recommendations: awareness and understanding; health and social care systems; information and support for people living with dementia; recognition of people with dementia as active citizens; investment in research; informing people with dementia about research and opportunities for participation.

Dementia 2013: The Hidden Voice of Loneliness

Kane, M., Cook, L
Alzheimer’s Society (UK)
2013

The 2013 Dementia report produced by the Alzheimer’s Society (UK) focused on people with dementia living alone and the impact of loneliness on quality of life. A questionnaire was used to gather the views of over 500 people living with dementia, although only 1% resided in NI.

A small number of interviews and two focus groups were conducted to explore the experiences of people with dementia who lived alone in more detail. The report references existing research, publicly available statistics and current work. A YouGov poll of 2,287 UK adults provided information on perceptions of dementia. Dementia 2013 suggests there has been some improvement in quality of life for people living with dementia since the 2012 report but that progress is slow. Key findings were: lack of diagnosis is an ongoing issue; there has been a marked reduction in inappropriate prescribing of antipsychotic medication; 17% of those surveyed said they are not living well with dementia, the same figure as 2012; a third of people with dementia said losing friends accompanied a diagnosis; a high percentage of people with dementia are lonely. In line with these findings the report highlights some general priorities across the UK and then focuses on each region.  The priorities for NI are to:

  • Improve health and care for people with dementia, drawing attention to Transforming Your Care, a review of health and social care in NI, and the consultation Who Cares? on the future of adult care and support in NI.

  • Make choice and control a reality for people with dementia, highlighting the need for NI to introduce formal mental capacity legislation.

  • Improve quality of life for people with dementia by reducing loneliness.

Dementia 2014: Opportunity for Change and Northern Ireland Summary

Dowrick, A., Southern, A.
Alzheimer’s Society (UK)
2014

The Dementia 2014 report by the Alzheimer’s Society (UK) provides a summary of key areas affecting people with dementia across England, Wales and NI.

Over 1,300 people living with dementia or caring for someone with dementia responded to a survey and over 2,200 members of the public were surveyed using a YouGov poll. A summary specific to each region including NI was also completed. The summary report for NI points out that despite higher diagnostic rates in NI access to diagnosis and post-diagnostic support remains inconsistent. Less than one in five people felt that they were getting enough support from the government. The report also comments on the variable quality of care provided in NI. Just over half of those living with dementia said they were living well with less than half feeling they are part of their community and it is suggested that people with dementia in NI have yet to feel the benefits of dementia friendly community initiatives. The report comments on the lack of government investment to support the implementation of the regional strategy. Fourteen actions are recommended relating to diagnosis, post-diagnostic support, resourcing the dementia strategy, social care funding, health and social care integration, involving people with dementia and carers, training, dementia friendly communities, evidenced based care and research.

Focus on Dementia

CARDI
CARDI
2010

In 2010, CARDI provided an update on policy around dementia in ROI and NI, at a time that commitments had been made to developing national dementia strategies in both jurisdictions.

The briefing paper also drew attention to the relatively low level of funding for research on dementia in comparison to other chronic conditions and makes the case for the promised national dementia strategies in ROI and NI to be used as channels for promoting research on dementia, as has been done in other countries.    

Creating Excellence in Dementia Care: A Research Review for Ireland’s National Dementia Strategy

CAHILL, S., O’Shea, E., PIERCE, M.
ICSG, Living with Dementia
2011

An extensive research review was undertaken by Cahill, O’Shea and Pierce (2011a), which provided updated estimates of the number of people with dementia in ROI in 2006 and projections of future numbers in 2041.

It estimated the social and economic costs of dementia to be €1.69bn per annum, a large proportion of those costs falling on informal caregivers. It reviewed the current and future availability of services for people with dementia, looked at what other countries are doing and what lessons can be learned from them. The findings of this research review were distilled into a shorter report aimed at the general public (Cahill, O’Shea and Pierce, 2011b). 

A National Dementia Strategy for Ireland: Signposting the Possibilities: A Clinician’s Perspective

O’Connell. H.
Alzheimer Society of Ireland
2012

This first of four publications in this section from the Alzheimer Society of Ireland is written by O’Connell (2012) who outlines key directions from the clinician’s perspective to be taken in ROI’s National Dementia Strategy including an emphasis on prevention, early diagnosis and access to the

best available treatments. He acknowledges that people with dementia may have different priorities to clinicians and healthcare professionals and that it is important that the voice of the person with dementia is heard. Following a brief review of national dementia strategies in other countries, O’Connell outlines what he believes should be included in the Irish National Dementia Strategy. 

National Strategy on Dementia: Summary of Consultation Process

Department of Health
Department of Health
2012

Following the assembly of the evidence into the research review described above, the Department of Health embarked on a public consultation process which commenced on 4 July and concluded on 31 August 2012.

The Department of Health invited submissions and used the research review as a basis for developing a questionnaire used in its public consultation. It received 73 responses and the core messages contained in the submissions and completed questionnaires are summarised in this report.  

Clinicians’ Roundtable on the National Dementia Strategy ReportClinicians’ Roundtable on the National Dementia Strategy Report

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The second Alzheimer Society of Ireland publication is a report summarising a roundtable discussion involving health care professionals from the four areas of Old Age Psychiatry, Geriatric Medicine, Neurology and Psychology.

Facilitated by the Alzheimer Society of Ireland, the roundtable discussion brought together participants to share their expertise and discuss core clinical elements of the upcoming Irish National Dementia Strategy. The discussion centred on three key themes: Clinical Leadership and Developing a Dementia Register; People with Younger Onset Dementia; and Early Diagnosis and Memory Clinics/Services. A set of further actions needed to move the issues discussed forward is also included. 

Multidisciplinary Clinicians Roundtable on the National Dementia Strategy

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The third Alzheimer Society of Ireland publication is a report summarising a roundtable discussion involving healthcare professionals from multidisciplinary backgrounds including occupational therapy, social work, physiotherapy, speech and language therapy and nursing.

The themes used to structure the roundtable discussion were grounded in each of the five disciplinary areas: non-pharmacological interventions and behaviours that challenge (occupational therapy); improving Communication (speech and language therapy); physical activity for health and wellbeing (physiotherapy); A Social Work Perspective (social work); and the registered nurse’s contribution to person centred care (nursing).  As with the previous roundtable discussion, the report concludes with a set of suggestions as to how multidisciplinary clinicians can influence the development of the Irish National Dementia Strategy.  

Living With Dementia’: Implications for the National Dementia Strategy: Summary of Roundtable Discussions Submitted to the National Dementia Strategy Working Group

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The fourth Alzheimer Society of Ireland publication reports on two roundtable discussions organised by the Alzheimer Society of Ireland, which provided an opportunity for the National Dementia Strategy Working Group and Department of Health officials to meet with people with dementia and carers a

nd get their input on priority areas earmarked for inclusion in the strategy. The roundtables were structured around three themes: the role of the GP; community services; and dementia awareness and education. The report summarises the discussions points and key messages under each heading. 

Irish National Dementia Educational Needs Analysis

Irving, K., Piasek, P., Kilcullen, S., Coen, A-M., Manning, M.
HSE, DCU, The Atlantic Philanthropies
2014

Building on the work by De Siún and Manning (2010a), this report by Irving et al. (2014) presents the results of a Dementia Educational Needs Analysis carried out in ROI in 2013/2014.

In contrast to De Siún and Manning (2010a), this report focuses on the information, training and education needs of a much wider range of stakeholders starting with the person with dementia, and including people in their care-giving network, healthcare system and the broader community in which they live. The report outlines the major gaps in education and provides recommendations for future educational and service reform. It identifies seven priority areas which are to provide the focus for the development of education and training programmes.  

National Dementia Education and Awareness Programme: Evaluation of the Pilot Project

De Siún, A., Manning M.
Health Service Executive
2010

Based on the findings of the above Dementia Education Needs analysis and recommendations from a literature review, a generic dementia education and awareness programme for staff caring for older people with dementia in community, acute and long-stay care settings in ROI was developed fo

r delivery over three and a half education days. Its aim was to provide participants with the knowledge, skills and attitudes required to deliver high quality, person-centred care to people with dementia. The programme was piloted in two areas. An evaluation was carried out to capture the views of participants and facilitators on the content and delivery of the programme, the impact of the programme on staff knowledge and attitudes to dementia, and the views of managers on the impact of the programme on their organisation/area of work. The evaluation indicated that the programme has the desired impact on staff knowledge and attitudes. The content and delivery of the programme were evaluated very positively by both participants and facilitators who valued the experience of inter-disciplinary learning. Overall the programme was found to have provided an excellent model for improving staff knowledge, attitudes and care practices for dementia in ROI.

National Dementia Project: Dementia Education Needs Analysis Report

De Siún, A., Manning, M.
Health Service Executive
2010

In order to address the knowledge deficits of care staff in ROI regarding dementia through a three-year National Dementia Education Programme funded by the HSE, a decision was taken to first ascertain what the knowledge deficits were through an educational needs analysis.

De Siún and Manning (2010) collected data from nurses and care attendants via postal questionnaires and focus groups. They found very low levels of dementia care training among both nurses and care attendants. Responses to the Approaches to Dementia Questionnaire, which aims to capture attitudes to people with dementia revealed that respondents scored quite well on the Person-centred dimension, which refers to the way in which people with dementia are responded to as unique individuals with the same value as any other person, but scored less well on the Hope dimension, which reflects a sense of optimism/pessimism towards the abilities and the future of people with dementia. The report concluded that there is a need for a core generic dementia education programme focusing on both personal attitudes and general care practices to be offered and one that could be provided on a modular basis to staff in all areas of work. 

Integrated Care Pathways for People with Dementia: Exploring the Potential for Ireland and the forthcoming National Dementia Strategy

Irving, K., McGarrigle, L.
Alzheimer Society of Ireland
2012

In this expert policy paper by Irving and McGarrigle (2012) and a book chapter bearing the same title (Irving et al., 2013), Integrated Care Pathways (ICPs) are defined as instruments designed to map out the direction of clinical and administrative activities for all care professionals working wi

th people who have a specific disease such as dementia. They scope out what Integrated Care Pathways are and consider the practical application of Integrated Care Pathways. They summarise the evidence pointing to the benefits of Integrated Care Pathways and outline the challenges that need to be addressed if Integrated Care Pathways are to be successful. They compare and contrast two cases studies, one from England and one from the Scotland, before looking at the relevance of Integrated Care Pathways for ROI, following which they highlight key issues relating to the health care system and the role of case management that need to be addressed if Integrated Care Pathways are to be successfully introduced in ROI. Cahill (2013), writing about dementia and integrated care, argues that although integrated care services is widely promoted in public policy in ROI, the evidence suggests that integrated care for people with dementia is more of an aspiration than a reality. She identifies several changes that are needed in service provision for integrated care to become a reality for people with dementia.    

Report on Creating Dementia Friendly Communities

Alzheimer’s Society
Alzheimer Society of Ireland
2012

There are currently seven communities across ROI designated as Dementia Friendly Communities under a Dementia Friendly Communities Initiative of the Alzheimer Society of Ireland.

The idea of creating dementia friendly communities was the subject of a 2012 report by the Alzheimer Society of Ireland. The report was based on work that the ASI undertook with a UK-based organisation Innovations in Dementia to gain a better understanding of the concept. The report briefly outlines the concept of dementia friendly communities and what it means to people with dementia. It reports on the issues arising from workshops that the Alzheimer Society of Ireland held with its staff and volunteers, outlines some of the initiatives aimed at making communities dementia friendly led by Alzheimer Society of Ireland staff and makes four recommendations for creating dementia friendly communities.      

Building Dementia Friendly Communities: A Priority for Everyone

Green, G., Lakey, L.
Alzheimer’s Society (UK)
2013

Based on evidence on dementia friendly communities in England, Wales and NI and drawing on the perspective of the general public, people with dementia and their carers, this report provides guidance to communities wishing to develop dementia friendly communities from scratch and to those communit

ies where the work has already begun. It presents examples of dementia friendly initiatives and the barriers that exist within communities. The report defines a dementia friendly community as “one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them”, and identifies ten areas of focus: involving people with dementia; challenging stigma and building understanding; offering accessible and inclusive community activities; the potential of people with dementia; ensuring access to early diagnosis and post-diagnostic support;  providing practical support for engagement in community life; providing consistent and reliable travel options; ensuring the physical environment is accessible and easy to navigate; promoting respectful and responsive businesses and services.