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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. 

The Law and Ethics of Dementia

Donnelly, M, D
Hart Publishing Ltd
2014

Two authors from ROI contributed to this book discussing the many complex legal and ethical issues associated with dementia. The book is written from the perspectives of clinicians, lawyers, ethicists, those living with dementia and caring for someone with dementia.

Donnelly’s chapter introduces the section on legal perspectives providing a general overview that sets the scene for the chapters to follow; the section discusses issues as diverse as assessing capacity, proxy decision making, being lost and the use of new technology with people who have dementia.  O’Neill contributes a chapter on dementia and driving in a section on social perspectives that considers a range of issues, namely, discrimination, physical, financial and other abuse, driving, voting and political participation.

Dementia 2010: The Economic Burden of Dementia and Associated Research Funding in the UK

Alzheimer Research Trust
Alzheimer Research Trust
2010

The Alzheimer Research Trust in the UK commissioned the Health Economics Research Centre at the University of Oxford to undertake this cost of illness study to evaluate using a societal perspective the combined costs of dementia and Alzheimer’s disease (AD).

Overall, the study estimated the cost of dementia in 2008 to be £23 billion in terms of health and social care, informal care and productivity losses in 2008. Of these costs, 5% were attributed to healthcare, 40% to social care and 55% to informal care, with productivity losses accounting for less than 1% of total costs. The study also estimated the costs of cancer and compared the costs of dementia and cancer, dementia and coronary heart disease (CHD) and stroke. It estimated the costs of dementia to be the highest, followed by cancer, CHD and stroke, with the costs of dementia greater than the combined costs of cancer and CHD.  In addition, the study investigated the allocation of research funds by governmental organisations and charities in the UK. It found that despite the high economic cost of dementia, research funding is highly dominated by cancer followed a considerable way behind by CHD and offers some suggestions to explain the underfunding for dementia research. 

Prevalence and Projections of Dementia in Ireland

PIERCE, M., CAHILL, S., O’Shea, E.
Genio
2011

Providing estimates of dementia prevalence and projects was a key objective of the research review of dementia in ROI (Cahill et al., 2011a). However, the estimates reported in the review were based on the 2006 Census of Population.

Hence, a new Census of Population was conducted in 2011 and the 2006 estimates were updated in a new report for ROI. Applying the EuroCoDe dementia prevalence rates, it estimated that there were almost 48,000 people with dementia in 2011 and based on the most recent population projections, there could be as many as 90,000 people with dementia in ROI by 2031. Unlike the prevalence estimates for NI, this report provides an estimate of the number of women and men with dementia in ROI and points to the need for a gendered analysis to be taken to dementia.  

Dementia UK Update

Prince, M, Knapp, M, Guerchet, M, McCrone, P, Prina, M, Comas-Herrera, A, Wittenberg, R, Adelaja, B, Hu, B, King, D, Rehill, A, Salimkumar, D.
Alzheimer’s Society (UK)
2014

This report published by the Alzheimer’s Society (UK) provides an update to the figures provided on the prevalence and costs of dementia in the UK in the 2007 report of the same name.

An Expert Delphi Consensus approach was taken to update dementia prevalence rates for Western Europe, which were then applied to UK population data. Health, social and unpaid care costs were calculated using a new version of a model of the costs and outcomes of dementia that builds on previous versions of the Personal Social Services Research Unit (PSSRU) aggregate long-term care model (Wittenberg et al., 1998, 2001) and of the PSSRU dementia care model (Comas-Herrera et al., 2007). The report estimated that the total number of people with dementia in the UK in 2015 is 850,000 and is forecast to increase to 1 million by 2025. The total cost of dementia in the UK is estimated at £26.3 billion, with an average cost of £32,250 per person, comprising £4.3 billion spent on healthcare costs, £10.3 billion spent on social care (publicly and privately funded) and £11.6 billion contributed by the work of informal carers of people with dementia.

Dementia prevalence estimates for NI for the years 2010-2013 and 2021 are readily available on the Alzheimer’s Society (UK) website.    

Financing Dementia: What money is available, what does dementia need and will the required resources be received?

TRÉPEL, D.
Alzheimer Society of Ireland
2012

In a later report, Trepel (2012) examines the different ways in which healthcare systems can be financed and resources distributed to those in need of healthcare.

He describes the unique public-private mix of financing health care in ROI, the two-tiered system of healthcare that has evolved, and the implications that this has for dementia care in ROI. Trepel (2010) highlights the absence of a clear budget line for dementia care. With increasing age dependency ratios meaning that fewer resources will be available in the future, he argues that the Irish government needs to make a financial commitment to dementia, guided by the principles of social solidarity, social sustainability and interdependency. To meet the needs of people with dementia and their carers and promote their quality of life, he argues that the “social contract” paid for during the productive years needs to be demonstrably upheld and contractual responsibility of private health insurers recognised.   

An Economic Perspective of Dementia Care in Ireland: Maximising Benefits and Maintaining Cost Efficiency

TRÉPEL, D.
Alzheimer Society of Ireland
2010

Trepel (2010) examines the international evidence on dementia in relation to prevention, care and cure and considers how the evidence can be used to inform decisions about spending on dementia that will maximise benefits to society and at the same time maximise optimal cost efficiency, and in par

ticular the implications for ROI. He concludes that investing in services and interventions to support carers is essential to achieving cost-effectiveness in dementia care. 

Getting Personal? Making Personal Budgets Work

Lakey, L., Saunders, T.
Alzheimer’s Society (UK)
2011

This report from the Alzheimer’s Society (UK) focuses on the use of personal budgets to meet the government’s personalisation agenda.

It suggests personal budgets offer many benefits for people with dementia and carers but that they are not suitable for everyone, so that other options must be available. Considerable burden was associated with accessing and using direct payments, and attitudes and understandings of health and social care professionals were identified as a barrier. There is a limited market range of services available and insufficient funding was highlighted. Criteria for eligibility were found to be problematic with many people not becoming eligible until a situation reached crisis point.

The report recommends full involvement of people with dementia and their carers in the personal budgets agenda, that personal budgets must not be seen as a cure-all for the social care system, that the market should be fully developed to deliver a range of different types of dementia services, that the personal budgets system should be adapted to meet the particular needs of people with dementia and their carers, that timely and appropriate information for people with dementia and their carers must be provided as well as awareness raising and training for health and social care professionals, and that the system must ensure an improved evidence base on dementia, including pilot sites to evaluate effective models of provision and accurate data on current use of personal budgets.

The Dementia Tax

Alzheimer’s Society
Alzheimer’s Society (UK)
2011

This report was produced by the Alzheimer’s Society (UK) to inform the debate on the funding of care and support for people with dementia.

The report, which follows the Society’s first Dementia Tax report (2008), suggests that people with dementia face the highest costs of care of any group and have to pay the most towards their care to the extent that the authors consider this a ‘Dementia Tax.’ Almost 4,000 people either living with dementia (411) or caring for someone with dementia were surveyed (1% of this population resided in NI). The report primarily focuses on England but has influenced policy development in Wales and NI. Key indicators of a better funding and charging system of care are suggested: people with dementia living at home for longer with better social contact; less people going into hospital and shorter hospital stays; more choice in relation to care at home and in formal care environments; the provision of specialist dementia care in care homes. The report also calls on the government to ensure an open public debate is held on the Dilnot Report (2011), with greater clarity and scrutiny of this report, recognition of the contribution of families to providing care, changes to care regulation, and creating better systems to reward and retain care staff. 

The £20 Billion Question - an inquiry into improving lives through cost effective dementia services

Sharp, S., Saunders, T., O’Brien, N.
All Party Parliamentary Group
2011

This report commissioned by the Alzheimer’s Society (UK) begins by setting the scene for provision of services in a challenging financial climate, making reference to the reduction in NI’s central funding and the likely impact on community care.

The report makes nine recommendations highlighting the need for: better collaboration and integration across dementia care and support systems; sharing expertise between different sectors; early intervention; improved co-ordination, increased use of key workers; better access to training; an increase in rates of diagnosis; better support for carers; sharing of best practice.

Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes

Quince, C.
Alzheimer’s Society (UK)
2013

This report documents the experiences of people with dementia living in care homes and the views of the public on care homes.

Three questionnaires were developed and the results used to inform the report: one for family members of people with dementia in care homes, one for staff in care homes in England, Wales and NI and one for people with dementia living in a care homes. The findings are supplemented with data from a 2012 YouGov poll on the attitudes of the general public to dementia and care homes. The report found that there were low expectations of the quality of life for those living with dementia in care homes across all groups surveyed, with a high percentage of adults expressing fear about potentially living in a care home in the future. It suggests more needs to be done to support people with dementia in the community and to promote choice and quality in care homes. While a high percentage of family carers rated the quality of care for the person with dementia as good, a lower percentage rated their quality of life as good. The overarching recommendation of the report is for government and the care sector to co-operate to improve public understanding of the potential for people with dementia to lead a good life in care homes, to challenge perceptions of poor practice, and promote care homes as appropriate places to care for people with dementia.

Attitudes to and Knowledge of Dementia in Northern Ireland

Dowds, L., MCPARLAND, P., DEVINE, P., Gray, A.M.
ARK NI
2010

This report provides findings from a survey of the general public in Northern Ireland which explored attitudes to and knowledge of dementia.

The survey was carried out as part of the 2010 Northern Ireland Life and Times Survey (NILT) and the findings are reported under four headings: knowledge of dementia; perceptions of people with dementia; attitudes towards people with dementia; and capacity for independent living (as perceived by the public). The findings indicate that while there is a reasonable knowledge of dementia among the general public in NI, there are significant gaps in their knowledge. Stigmatising attitudes to people with dementia are common and there is little belief in the capacity of people with dementia to live independent lives. 

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.