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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. 

Acute Hospital dementia care: Results from a National Audit.

Timmons, S., O’Shea, E., O’Neill, D., Gallagher, P., de Siún, A., McArdle, D., Gibbons, P. and Kennelly, S
BMC geriatrics
2016
This paper reports on the findings of a national audit of dementia care in acute hospitals. Thirty five hospitals, 660 charts, senior and ward management interviews inform the audit.
Levels of physical assessment ranged from high (80% of patients) in mobility, continence and pressure scores to low (less than 40%) in functioning and BMI, while no pain assessment was carried out for almost 25% of the sample. When it came to mental assessment, less than half of patients were assessed for cognition, delirium, behavioural, psychological symptoms of dementia, and mood. Dementia awareness training was found to be low, with a lack of mentorship and supervision. Most wards were running with less than a full complement of staff,. Discharge planning for people with dementia was found to be poor and high numbers of people admitted from home were discharged to long term care.

Patterns of psychotropic prescribing and polypharmacy in older hospitalized patients in Ireland: the influence of dementia on prescribing.

Walsh, K.A., O'Regan, N.A., Byrne, S., Browne, J., Meagher, D.J. and Timmons, S.
International Psychogeriatrics
2016
This is a retrospective study; a cross sectional analysis of the original Cork Dementia Study medication data.
The authors set out to describe use of psychotropic, anti-cholinergic and deliriogenic medication among older hospitalised patients, both with and without dementia and to identify the prevalence of polypharmacy (5 or more medications) and psychotropic polypharmacy (2 or more psychotropic agents). They found that over two thirds of older people in hospital experience polypharmacy with a quarter experiencing major polypharmacy. In line with other studies they found high levels of psychotropic medication use with significantly higher levels of these being prescribed to people with dementia. Patients admitted from nursing homes were 5 times more likely to be prescribed an anti-psychotic medication. No significant differences were found between the two groups when it came to anti-cholinergic, deliriogenic or cardiovascular agents. The authors conclude that dementia is under diagnosed among this population and there is a high prevalence of polypharmacy and psychotropic drug use.

Acute hospital care: how much activity is attributable to caring for patients with dementia?.

Briggs, R., Coary, R., Collins, R., Coughlan, T., O'neill, D. and Kennelly, S.P.
QJM: An International Journal of Medicine
2015
Briggs et al. (2015) reviewed hospital activity in a 600 bed university hospital where between 2010 and 2012, 929 patients were admitted with a diagnosis of dementia – 2% of all in patient episodes, reflecting a 21% increase in admissions of this patient group.
Overall hospital activity related to people with dementia was equal to 10% of total bed days and 5% of total hospital case mix budget, a cost almost 3 times higher than for those without dementia. On average patients with dementia had a 25.6 day length of stay compared to 11.2 days among those without dementia. The authors highlight the likelihood that the data under represents the true impact of dementia as many people presenting to hospital do not have a diagnosis and cognitive impairment is not recognised. They point to the need for better community services, better cognitive screening and perhaps a dementia specific service for this cohort.

Integrated Care Pathways and Care Bundles for Dementia in Acute Care: Concept Versus Evidence

Sullivan, D.O., Mannix, M. and Timmons, S.
American Journal of Alzheimer’s Disease and Other Dementias
2017
This paper by O’Sullivan et al. (2017) presents the results of a literature review to identify evidence on the effectiveness of integrated care pathways (ICPs) and/or care bundles for dementia care in the acute hospital sector.
While ICPs for dementia care were identified, none that focusd on dementia care in an acute hospital setting were found. The authors also found limited research on the effectiveness and economic evaluation of ICPs generally.

Comparison of cognitive and neuropsychiatric profiles in hospitalised elderly medical patients with delirium, dementia and comorbid delirium– dementia

Leonard, M., McInerney, S., McFarland, J., Condon, C., Awan, F., O’Connor, M., Reynolds, P., Meaney, A.M., Adamis, D., Dunne, C., Cullen, W., Trzepacz, P.T. and Meagher, D.J.
BMJ Open
2016
This study by Leonard et al. (2016) assessed 176 patients in an Irish acute hospital and found 50 of the patients to have delirium without dementia, 62 with delirium and dementia, 32 with dementia without delirium and 32 who were cognitively intact.
The study then compared the neuropsychiatric profile of these groups of patients using three well-validated instruments for delirium and dementia severity, the DRS-R98 (Revised Dementia Rating Scale), CTD (Cognitive Test for Delirium) and NPI-Q (Neuropsychiatric Inventory). It found that delirium, both with and without comorbid dementia, could be distinguished from dementia alone using the former two instruments. It also found that, although both delirium and dementia are characterised by a generalised disturbance of cognitive function, delirium can be distinguished from dementia because of distinct differences in impairment of attention and vigilance. The study argues that the cognitive functions of attention and vigilance should be emphasised in efforts to identify delirium, including in populations where there are high rates of dementia.

The detection, diagnosis, and impact of cognitive impairment among inpatients aged 65 years and over in an Irish general hospital – a prospective observational study

Power, C., Duffy, R., Bates, H., Healy, M., Gleeson, P., Lawlor, B.A. and Greene, E..
International Psychogeriatrics
2017
In a prospective observational study Power et al. (2017) assessed patients admitted to an Irish Hospital over a two week period for delirium and cognition. They found high levels of cognitive impairment (48%) with 27% meeting the DSM-IV criteria for dementia and 21% meeting the criteria for MCI.
The authors discuss the discrepancy evidenced in this study and others between prevalence and recognition of dementia among clinicians. This is particularly significant since poorer outcomes are evidenced for people with dementia who had longer hospital stays and were more likely to be readmitted in the next 12months. The authors conclude that significant investment is required in education and resources and this must take place within a wider cultural change in both institutions and society.

Care of Patients with Dementia in an Acute Trauma and Orthopaedics Unit

McCorkell, G., Harkin, D., McCrory, V., Lafferty, M. and Coates, V.
Nursing Standard
2017
This paper by Mc Corkell et al. (2017) reports on a piece of action research that set out to improve awareness of the needs and care of patients with dementia in an acute trauma and orthopaedics unit.
In an audit of patient records the authors found inadequate recording of the type of dementia diagnosed, inadequate pain assessment and administration of pain relief and minimal recording of communication with families. Post audit, ward nurses collaborated to design a dementia toolkit that addressed the issues identified in the review. The toolkit included advice on communicating with people with dementia and family members, use of a cognitive impairment pain assessment tool and information on assessment and management of delirium. On introduction, it became evident that ward staff required more education and training to effectively use the toolkit. This was provided and a further audit, six months later, indicated significant improvement in awareness and care of patients with dementia. For example, post implementation; a cognitive impairment pain assessment tool had been used with 95% of patients. The authors suggest the toolkit is discreet and inexpensive while supporting staff to meet the needs of people with dementia.

There’s a Catch-22’–The complexities of pain management for people with advanced dementia nearing the end of life: A qualitative exploration of physicians’ perspectives.

De Witt Jansen, B., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S.J., Morgan, S.M., Watson, M. and Parsons, C.
Palliative medicine
2017
In this study De Witt Jansen et al. (2017) interview physicians from hospice, hospital and general practice.
They explore physician perspectives of the barriers to pain management among people nearing the end of life with dementia and on the impact of these barriers on outcomes and how they overcome these challenges. The most common barrier identified was the difficulty in diagnosing pain. Where a patient is no longer able to communicate verbally, physicians rely on nonverbal and physical signs but are concerned about the potential to misinterpret these cues. The complexities of complex comorbidities, low body mass index and ageing physiology were also identified as barriers. This is further complicated by the fact that many patients in this group are already on other medications, resulting in the choice of suitable analgesics being restricted. Many patients are also unable to take oral medication, and more agitated patients often remove syringe drivers. All respondents believe that input from families and other professionals is essential if they are to provide effective pain management. The findings from this study are being used to develop and pilot an intervention that aims to develop a gold standard in pain management for people with dementia.