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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.

An exploration of nursing home managers' knowledge of and attitudes towards the management of pain in residents with dementia

BARRY, H.E., PARSONS, C., PASSMORE, A.P., HUGHES, C.M.
International Journal of Geriatric Psychiatry, 27(12)
2012

Barry et al. (2012) explore the levels of knowledge and attitudes of nursing home managers towards the management of pain in residents with dementia.

While most respondents evidenced a good knowledge of pain experience in residents with dementia, there was little indication that recognised pain assessment or management tools are used, and surprisingly few respondents had received recent training on pain management. The authors identify the need for further research to identify the factors affecting the prescribing of analgesics for people with dementia in care settings.

Community pharmacists and people with dementia: a cross-sectional survey exploring experiences, attitudes, and knowledge of pain and its management

BARRY, H.E., PARSONS, C., PASSMORE, A.P., HUGHES, C.M
International Journal of Geriatric Psychiatry, 28(10)
2013

Barry et al. (2013) examine the knowledge and experience of community pharmacists in managing pain in people with dementia.

 They found that community pharmacists had a positive person-centred attitude towards people with dementia, a good knowledge of the use of anti-psychotic medications but were uncertain about the difficulties people in the later stages of dementia may have with swallowing and were unsure about pain assessment and management.

Dementia knowledge and attitudes of the general public in Northern Ireland: an analysis of national survey data

MCPARLAND, P., DEVINE, P., INNES, A., GAYLE, V.
International Psychogeriatrics, 24(10)
2012

Mc Parland et al. (2012) explored the knowledge and attitudes of the general public to dementia.

 They found that while there is a reasonable level of knowledge about dementia, the general public hold overwhelmingly negative attitudes towards dementia and that stereotypical, stigmatising views of people with dementia dominate understandings.

Quality of end-of-life care for dementia patients during acute hospital admission: a retrospective study in Ireland

AFZAL, N., BUHAGIAR, K., FLOOD, J., COSGRAVE, M.
General hospital psychiatry
2010

In a retrospective case study review, Afzal et.al. (2010) analysed potential differences in quality of end of life care for people with dementia during their final hospital stay compared to people without dementia.

 The study highlights potential inequalities and concludes that people diagnosed with dementia have less access to palliative care, and their caregivers are given less opportunity to take part in decisions about treatment. 

Assessment of factors that influence physician decision making regarding medication use in patients with dementia at the end of life

PARSONS, C., MCCORRY, N., MURPHY, K., BYRNE, S., O'SULLIVAN, D., O'MAHONY, D., PASSMORE, P., PATTERSON, S., HUGHES, C.
International journal of geriatric psychiatry
2014

Parsons et al.

(2014) assessed the extent to which patient-related factors and physician's country of practice influenced decision making among hospital physicians and GPs regarding withholding or discontinuing key medications in patients with end-stage dementia in NI and in ROI. The study evidences uncertainty and variation around the prescribing of antibiotics and the discontinuation of anti-dementia medication. There was less variability in decision-making related to statins and anti-psychotic drugs. The authors found that for all medications, care setting and physician's country of practice had the strongest and most consistent effects on decision making. 

A cross-national cross-sectional survey of the attitudes and perceived competence of final-year medicine, nursing and pharmacy students in relation to end-of-life care in dementia

DE WITT JANSEN, B., WECKMANN, M., NGUYEN, C.M., PARSONS, C., HUGHES, C.M.
Palliative medicine
2013

De Witt Jansen et al. (2013) compared the attitudes to people with dementia of final year medical, nursing and pharmacy student groups in the US and NI, and also examined perceived levels of confidence and competence in providing end of life care.

They found that students across the three professions in both the US and NI held positive attitudes towards people with dementia but reported different levels of competence in end of life care that was largely linked to differences in disciplinary training   

Guidelines for nursing homes delivering end-of-life care to residents with dementia across the island of Ireland

CAHILL, S., DORAN, D., WATSON, M.
Quality in Ageing & Older Adults
2010

Cahill et al.

(2010) found that bereaved spouses of people with dementia who had been living in nursing homes were generally satisfied with the end of life care that their relatives had received and valued good personal care underpinned by a person-centred philosophy, being kept informed of their relatives’ care and having an opportunity to participate in appropriate decision-making at the end of life.     

Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

BARBER, J., MURPHY, K.
International journal of palliative nursing
2011

In a literature review examining specialist palliative care for people with dementia Barber and Murphy (2011) reported that there is very little information available about end-of-life care in advanced dementia from the viewpoint of the SPC nurse.

The review suggests that expertise in both dementia care and palliative care needs to be combined and that further research is required to establish guidelines to assist with specialist training of staff.

Cause of death in Alzheimer's disease: a cohort study

TODD, S., BARR, S., A.P.
QJM: monthly journal of the As
2013

In this prospective study, Todd et al.

(2013) examined the cause of death recorded on death certificates in an cohort of patients with Alzheimer’s disease in NI and compared these findings with expected death rates from the population to determine the accuracy of death certificate completion for a cohort of people with AD. The study found that AD was recorded on almost two-thirds of death certificates of AD subjects who died during follow-up. It found significant excess mortality in the AD group when compared with the NI population and that AD and pneumonia were the most significant underlying causes of death in the AD group. To explain differences between findings in the AD group compared with a control group, the authors conjecture that cause of death documented may be affected by the physician’s knowledge of the patient or reflect the approach to management of patients with end-stage dementia. 

Supporting persons with Down syndrome and advanced dementia: challenges and care concerns

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K., DUNN-LANE, J.
Dementia
2010

In this paper, McCarron et al.

(2010a) highlight the complexity of providing good end of life care for people with an intellectual disability and dementia and the need for further training and support, suggesting a more collaborative approach between Specialist Palliative Care Services and Intellectual Disability Services.  

The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia (2011)

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K.
Journal of Applied Research in Intellectual Disabilities
2011

This paper by McCarron et al. (2011) identifies seven inter-related themes thought to influence the role and timing of palliative care for people with an intellectual disability who have dementia. 

 

Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K.
Journal of Policy & Practice in Intellectual Disabilities
2010

This paper by McCarron et al. (2010b) discusses three key themes emerging from focus groups with staff working in ID care settings and a specialist palliative care provider in ROI supporting persons with an intellectual disability and dementia at the end of life.

The three key themes were: readiness to respond to end of life care needs; the fear of swallowing difficulties and environmental concerns, and ageing in place.

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. 

A Comparison of People Seeking Help at Memory Clinics in Belfast and Dublin

Barrett, S., Savage, G.
CARDI
2012

Barrett and Savage (2012) examined socio-demographic and clinical differences in people diagnosed with Alzheimer disease (AD) and MCI attending two specialist memory clinics, one in Dublin and the other in Belfast, and where possible changes over time.

They also examined medications used by people diagnosed with AD and MCI in the memory clinics. The mean age of people receiving a diagnosis of AD in the Dublin clinic was 74, and was lower than the mean age of 78 recorded at the Belfast clinic. A greater proportion of women than men (3:1) received a probable diagnosis of AD in both memory clinics, but data from the Dublin clinic suggests that this gender difference may be narrowing. There were differences between the two memory clinics with respect to educational attainment with a higher proportion of people diagnosed with AD in the Belfast clinic with primary educational only, an indication perhaps that the Dublin clinic attracts people from higher social-economic groups. 

Unlocking Diagnosis: The Key to Improving the Lives of People with Dementia

Alzheimer’s Society
All Party Parliamentary Group
2012

This inquiry by the All-Party Parliamentary Group on Dementia covers all parts of the UK, including NI. Evidence for the inquiry was gathered from people with dementia, carers, family members, health professionals and other organisations and interested others, using a questionnaire.

The inquiry found a range of barriers to diagnosis that included poor public awareness; a need for GP training and problems with the Quality and Outcomes framework within which GPs operate; problems with current assessment tools; variability in memory services provision; and poor post-diagnostic support. Nine general recommendations are made with further specific suggestions for devolved health administrations. In the case of NI it was suggested that the awareness campaign referred to in the regional strategy could be prioritised; that the Health Minister could make a commitment on how data on diagnostic rates already available through the NHS Atlas of Variation could be used in monitoring the progress of the strategy; the Health and Social Care Board and the Public Health Agency could explore options to include questions to identify symptoms of dementia through regular interventions with the over-65s and others at higher risk of dementia.

Mapping the Dementia Gap

CAHILL, S., Pierce, M
Genio
2011

Mapping the dementia gap produced by Tesco, Alzheimer's Society (UK) and Alzheimer Scotland puts figures on the gap between the number of people estimated to be living with dementia (both diagnosed and undiagnosed) across the UK, including NI, and the number that have received a diagnosis of deme

ntia based on the QoF dementia register. A fact sheet outlining dementia diagnosis rates specifically for NI in 2014 is available from the Alzheimer’s Society (UK) website. Equivalent figures are not available for ROI.