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. 

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.

Frailty: a costly phenomenon in caring for elders with cognitive impairment.

Butler, A., Gallagher, D., Gillespie, P., Crosby, L., Ryan, D., Lacey, L., Coen, R., O'Shea, E. and Lawlor, B.
International journal of geriatric psychiatry
2016
Butler et al. (2016) draw the reader’s attention to the costs of caring for people with dementia and the increasing pressure to define cost components.
115 cognitively impaired patients were assessed for frailly using the biological syndrome model to determine the role of frailty in relation to cost and resource utilisation. The authors found that frailty among patients with cognitive decline was strongly associated with daily informal care costs even when other risk factors such as dependence and co morbid illness are taken into account. They argue that this supports the consideration of frailty as a separate entity worthy of evaluation, suggesting that the development of frailty interventions have the potential to reduce costs.