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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.

Northern Ireland Life and Times Survey

ARK
2016

The Northern Ireland Life and Times Survey records the attitudes, values and beliefs of over 1,200 adults in NI to a wide range of social policy issues. In 2010 a module on attitudes to dementia was included.

Full details of the survey can be found at http://www.ark.ac.uk/nilt/ and an overview of the results of the dementia module is included in the awareness section of the journal article review.

Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study.

Kerpershoek, L., de Vugt, M., Wolfs, C., Jelley, H., Orrel, M., Woods, B., Stephan, A., Bieber, A., Meyer, G., Engedal, K. and Selbaek, G.
BMC health services research
2016
Kerpershoek et al. (2016) detail the study protocol used in the access to timely formal dementia care in Europe (ACTIFCARE) project.
This European study included participants from eight countries, including Ireland, and focused on increasing understanding of why people in the middle stages of dementia and their informal covers use or fail to use formal care services. The paper details the measures being used to assess met and unmet needs, quality of life and the programme timetable. The authors highlight the potential for development of best practice care strategies to improve access to care across Europe.

The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study.

Leavey, G., Abbott, A., Watson, M., Todd, S., Coates, V., McIlfactrick, S., McCormack, B., Waterhouse-Bradley, B. and Curran, E
BMC health services research
2016
The Northern Ireland Public Health Agency, the Royal College of GPs and a consortium of voluntary sector organisation and service users developed a Health Care Passport to be used by people with dementia and their informal carers.
This paper sets out the protocol to be used in evaluating whether the passport is acceptable and useful for this population. By adopting a qualitative longitudinal approach informed by critical realist review the authors argue they will facilitate a deeper evaluation of how it worked, for whom and in what context. Leavey et al. (2016) discuss the current barriers to holistic care for people with dementia and the pressure on family carers to meet the gaps in current service provision. They then describe how participants will be recruited and prepared for using the passport, the process of participant interview and passport content analysis. While acknowledging the potential benefits of the passport they point to the potential variables in its success or failure and to the essential nature of such an evaluation of the effectiveness of the passport across circumstances, time and a range of users.

Dementia in the acute hospital: the prevalence and clinical outcomes of acutely unwell patients with dementia

Briggs, R., Dyer, A., Nabeel, S., Collins, R., Doherty, J., Coughlan, T., O’Neill, D. and Kennelly, S.P.
QJM:An International Journal of Medicine
2016
This paper by Briggs et al. (2016) documents the results of a prospective observational study carried out with 190 patients presenting to acute hospital services in July 2014.
Over one third of these met the criteria for a diagnosis of dementia with only one third of this group having a prior diagnosis. The study reports a higher prevalence of delirium, polypharmacy, immobility and dependence among this group and a notable overlap between dementia and frailty. The authors were surprised to find no statistically significant differences between the two groups in terms of length of stay and in hospital mortality. However people with dementia were found to be more than two times more likely to die or be readmitted within 12 months. Overall this older population of patients had high mortality and institutionalisation rates and the authors point to the need for structured, age attuned care and comprehensive geriatric assessment.

Healthcare staffs’ experiences and perceptions of caring for people with dementia in the acute setting: Qualitative evidence synthesis

Houghton, C., Murphy, K., Brooker, D. and Casey, D.
International Journal of Nursing Studies
2016
This paper by Houghton et al. (2016) documents the results of a qualitative synthesis exploring health care staffs' experiences of caring for people with dementia in an acute setting.
The authors employed the VIPS framework, using Values, Individualised, Perspective and Social and psychological concepts to guide analysis. They found barriers to good care included, ineffective pathways, unsuitable environments, inadequate resources and a lack of emphasis on education and training. They argue for capacity building in ethos, organisation and structure, and point to evidence that education must be set within a culture of positive organisational change. The need for more research providing a stronger evidence base is highlighted with particular reference to the need to measure the effectiveness of recent initiatives.

.Antipsychotic prescription amongst hospitalized patients with dementia.

Gallagher, P., Curtin, D., de Siún, A., O’Shea, E., Kennelly, S., O’Neill, D. and Timmons, S.
International Journal of Medicine
2016
As part of the Irish National Audit of Dementia Care in acute hospitals, Gallagher et al. (2016) report on the use of anti-psychotic drugs among hospitalised patients in 35 hospitals. In this case data on anti-psychotic use in 656 cases was reviewed.
The paper describes a culture of anti-psychotic prescription; 41% of patients were prescribed an anti-psychotic during admission, a figure that is substantially higher than in the UK. Less than half of these received assessment of mental status and almost one quarter had no assessment of the presence of pain. The authors suggest that staffing issues and lack of dementia specific training are likely contributing factors. They argue that if a reduction in anti-psychotic prescription similar to that which has taken place in the UK is to happen, then a combination of research evidence, political will and strategic planning is required.

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.

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 use of neuroimaging in dementia by Irish general practitioners.

Ciblis, A.S., Butler, M.L., Bokde, A.L.W., Mullins, P.G. and McNulty, J.P.
Irish Journal of Medical Science
2016
This paper set out to investigate GP access to neuroimaging, referral patterns, GP confidence around referral and opinions on radiology reports. A postal survey was issued to Irish GP’s in rural, semi-rural and urban areas and 302 questionnaires were returned.
Most respondents rated diagnosis within their HSE region as excellent; two thirds of respondents in Dublin and Cork but 80% of respondents in Kildare and 100% in Monaghan rated this as poor. Almost half of respondents referred patients with suspected dementia for neuroimaging but one third did not have access to a MRI scan. Acess was found to be considerably easier for private patients than public patients. Most GPs did not follow clinical guidelines and were unaware of dementia specific guidelines. Of those who made referrals, most found radiology reports useful and were confident of their ability to understand the report. Ciblis et al. (2016) conclude that clear referral protocols are required with appropriate training for GPs and that access to neuroimaging should improve so that it is available to every patient regardless of location and of whether the GP practice is public or private.

Neuroimaging in dementia and Alzheimer's disease: Current protocols and practice in the Republic of Ireland.

Kelly, I., Butler, M.L., Ciblis, A. and McNulty, J.P.
Radiography
2016
Kelly et al.(2016) begin by pointing out that the majority of people living with dementia do not have a formal diagnosis. A questionnaire was sent to 94 CT, MRI and PET departments across the Republic of Ireland to establish if their imaging modality was used specifically to diagnose dementia.
Of these, 43% of CT departments, 40% of MRI departments and 50% of PET responded that their modality is being used to diagnose dementia. While radiologists and clinical specialist radiographers were evidenced to be involved in protocol development, standarised protocols for neuroimagng in dementia do not currently exist in Ireland. The lack of consensus on optimal protocols limits the potential of novel neuroimaging in practice and the authors conclude that international guidelines are warranted.

Current Practice in the referral of Individuals with suspected dementia for neuro imaging by General Practitioners in Ireland and Wales.

Ciblis, A.S., Butler, M.L., Quinn, C., Clare, L., Bokde, A.L., Mullins, P.G. and McNulty, J.P.
PLoS One
2016
In this survey approximately 2500 questionnaires were distributed to GPss in Ireland and Wales with a response rate of 17.9% and 17.6% respectively.
Ciblis et al (2016) found that 48.6% of Irish respondents and 24.3% of Welsh respondents directly refer patients for neuro imaging where they suspect dementia. However only a third of GPs expressed some confidence in selecting the appropriate neuro imaging modality and the majority lacked confidence in understanding neuro imaging in dementia. Very few had received training in this area and only one fifth of Irish and a third of welsh GPs had received any dementia specific training. The authors suggest further training in neuro imaging is required but also that the findings raise the question of whether GPs should be using direct referral for neuro imaging in dementia.

Aide memoire: What should a memory clinic or a memory assessment service look like

O’Carroll, T., Glynn, K., Lyons, D. and Looney, K
Irish Journal of Psychological Medicine
2016
In this article O’Carroll et al. (2016) review the current models of memory clinics in Ireland. Of the 17 memory clinics across the country, at least half have input from old age psychiatry, with some operating at a purely diagnostic level.
Less than half of clinics surveyed in 2011 were actively engaged in research. The authors express concern that many clinics do not have access to other health professionals such as neuropsychologists, occupational therapists and social workers, commenting on a potential over reliance on pharmacological therapies. They also highlight the apparent arbitrary location of memory clinics with many areas where a high prevalence of dementia exists, having no access to specialist services. The paper details one of four private, not for profit clinics that takes a multi professional, collaborative approach offering comprehensive evaluation and a commitment to research. The complicating factor of public and privately funded health services in the Republic of Ireland is highlighted with the authors arguing for more standardisation and integration of memory assessment services.

Concepts for communication about risk in dementia care: A review of the literature.

Stevenson, M., McDowell, M.E. and Taylor, B.J., 2016. Concepts for communication about risk in dementia care: A review of the literature. Dementia, p.1471301216647542
Dementia
2016
Pointing to the inherent nature of risk in health and social care for people with dementia, Stevenson et al. (2016) report on a synthesised review of research on risk concepts and communication in dementia.
Most literature focused on physical safety risks although a smaller number of articles did refer to psychosocial risks. Risk was found to be constructed differently among people with dementia, caregivers and professionals, with different conceptual understandings and approaches to risk. This variety, they argue, adds weight to the need for clear, transparent communication of risk, suggesting that a qualified knowledge base of risk outcomes in dementia care would support the development of better policy and practice.

The challenges of diagnosis and treatment of dementia in Down’s syndrome.

Vaughan, R.M., McGee, C., Guerin, S., Tyrrell, J. and Dodd, P.
Irish Journal of Psychological Medicine
2016
This study analysed retrospective data on twenty adults with Down’s syndrome (DS), who are clients of a specialist service in Dublin.
The aim was to compare the practice of this service on diagnosis and treatment of dementia, with the consensus recommendations of the Royal College of Psychiatry, British Psychological Society and National Institute for Health and Care Excellence. Further aims were to establish average time to make a diagnosis and commence pharmacotherapy, and to describe tolerability to acetylcholinesterase inhibitors. Vaughan et al. (2016) found that screening for dementia did not take place before the age of 30yrs with the mean age for first assessment being 48yrs and average age at diagnosis being 51yrs. Average length of time from first identified symptoms to diagnosis was 1.3yrs. Of those diagnosed, 83% were prescribed acetylcholinesterase inhibitors but the authors were concerned at the continued use of the drug even when there appeared to be no benefit to the person. They found that a wide range of assessments were in use and that longitudinal assessment and follow up were not practiced. The authors recommend the streamlining of assessment tools and repeating assessment on a longitudinal basis.

Supporting people with dementia to walkabout safely outdoors: development of a structured model of assessment

Bantry White, E. and Montgomery, P
Health & social care in the community
2016
This paper by Bantry et al. (2016) documents the process and early development of a structured method for assessing safety in people with dementia walking outdoors.
The authors discuss the complexity of assessing the risk in this population and the need for flexible use of any schedule based on individual circumstances. They acknowledge that the study is limited by its lack of consultation with people who have dementia, as it was designed as a carer informant tool. They point to the need for further research that consults people with dementia and that considers the potential benefits as well as the risks associated with an issue such as walking outdoors.

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians.

Van der Steen, J.T., Galway, K., Carter, G. and Brazil, K.
Archives of Gerontology and Geriatrics
2016
This paper examines the perceptions of physicians in the Netherlands and Northern Ireland on when to initiate advance care planning (ACP) with people living with dementia. Van der Steen et al. (2016) were particularly interested in whether there were specific differences by country.
There was general agreement in both countries that physicians should take the initiative on introducing ACP but stronger levels of agreement among Dutch physicians. However there was wide variability in agreement on initiating ACP at diagnosis, particularly in Northern Ireland. The authors found that the diversity of perceptions among physicians was not explained by country with the only independent predictor being a stronger role perception; physicians who agreed that they should take the initiative were more inclined to agree that ACP should begin at diagnosis.

Achieving consensus and controversy around applicability of palliative care to dementia.

van der Steen, J.T., Radbruch, L., de Boer, M.E., Jünger, S., Hughes, J.C., Larkin, P., Gove, D., Francke, A.L., Koopmans, R.T., Firth, P. and Volicer, L.
International Psychogeriatrics
2016
This paper by Van der Steen et al. (2016) documents the process and results of achieving consensus among experts on a Delphi Panel considering domains for palliative care in dementia and recommendations for optimal care.
Sixty four experts in dementia, palliative care or both made up the panel and this included representation from Ireland. While there was consensus among the panel on the benefits of palliative care in dementia, there was controversy when it came to applying palliative care early in disease progression. There were concerns that not enough account would be taken of existing dementia expertise; about labelling palliative care as care that is exclusively for people who are dying and a fear that people with dementia may be undertreated or abandoned when an early model of palliative care is applied. The authors conclude that further studies are needed examining the early application of palliative care and the integration of expertise in dementia and palliative care. They recommend an ongoing dialogue between both areas of expertise.

Exploring the prevalence of and factors associated with pain: a cross‐sectional study of community‐dwelling people with dementia.

Barry, H.E., Parsons, C., Passmore, A.P. and Hughes, C.M.
Health & social care in the community,
2016
This study set out to determine the prevalence of pain among people with dementia, the extent of medication use and patient/caregiver variables associated with the presence of pain.
The main body of research examining pain among people with dementia has previously been limited to the care home population. Participants in this study were recruited from 2 memory clinics in Northern Ireland. All patients in the study were taking medication prescribed by their G.P. with nearly two fifths taking anti-depressants. Over three quarters were taking 5 or more medications, defined as polypharmacy. Greater numbers of patients reported experiencing pain on an average day (57.5%) than at the time of interview (36%) but caregivers reported pain more frequently than patients, with gender being a significant factor. Patients taking analgesic medication were significantly more likely to be reported as experiencing pain by their care giver.

Psychotropic drug prescriptions in Western European nursing homes.

Janus, S.I., van Manen, J.G., IJzerman, M.J. and Zuidema, S.U.
International Psychogeriatrics
2016
For many years there have been warnings and guidelines in Europe related to the use of psychotropic drugs in dementia. This study by Janus et al. (2016) examined prescription of psychotropic drugs in nursing homes in Western Europe, including homes in Ireland.
High levels of anti-psychotic and anti-depressant prescription were found across Europe with Ireland being among 3 countries with the highest level of anti-psychotic drug use. The study differentiated between the general nursing home population and dementia patients only with Norway having low anti-psychotic use among both populations. The authors suggest that some differences may be explained by the way care is organised in different countries or by differing institutional prescribing cultures. They acknowledge the limitations of the review, in so far as the studies reviewed had differing inclusion and exclusion criteria, there were potential unknown differences in patient characteristics or stage of dementia and in some studies a lack of differentiation between anti-psychotic and anti-depressant use. However the study points to common usage of anti-psychotics despite clinical warnings and guidance and suggests more practice based guidelines may be required.

Excess winter mortality associated with Alzheimer’s Disease and related dementias in the UK: a case for energy justice.

Liddell, C., Morris, C., Gray, B., Czerwinska, A. and Thomas, B.
Energy Research & Social Science
2016
In this paper Liddell et al. (2016) analyse excess winter mortality (EWD) for all of the UK, including Northern Ireland (NI), over a 22 year period. For over 25 years excess winter deaths have been shown to be particularly related to respiratory and circulatory system failure.
More recently the UK office for National Statistics reported a high level of excess winter deaths among those living with dementia with figures since winter 2009/10 indicating EWDs were twice as high as among those dying from a circulatory cause. The data suggest that these figures are not limited to those with vascular dementia. Figures in NI and Scotland show a steady increase in EWD’s, while England and Wales are more consistent. the authors suggest that the prevalence of EWDs among people with dementia indicates that prior to death they are living in levels of cold exceeding that within a normal thermal range, where their condition may mean they are less able to get warm, no longer have the same sensitivity to heat and cold and are unable to make adaptive choices to stay warm. They recommend further analysis to focus on where people are living before death and no investigation comorbid conditions at time of death.

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.

Uniforms in dementia care: A barrier or a necessity?

MITCHELL, G.
Nursing ethics
2016
In this case study Mitchell (2016) discusses a real ethical dilemma in a dementia care home in Northern Ireland. Two groups of care staff were divided on the issue of whether or not to continue wearing a uniform.
It had been proposed that staff wear their own clothes, including nightwear for night shifts or wear clothes appropriate for the 50s and 60s, an era familiar to most residents. Those supporting the change felt that clothes related to this era would stimulate discussion and reminiscence while staff wearing nightwear would help to orient residents to the fact that it was night time. Staff in favour of retaining uniforms felt that the change in practice might be disruptive and confusing to residents and that it could also contribute to stigma as agency staff and visitors might perceive that people with dementia are living in a fantasy world. There was also some concern that staff wearing nightwear could trigger inappropriate sexual responses from some residents. Both sets of views were framed within a person centred approach and management decided that the continued use of uniforms was the best approach for residents at this time.

Development and application of medication appropriateness indicators for persons with advanced dementia; A feasibility study

Parsons, C., McCann, L., Passmore, P. and Hughes, C.
Drugs and Aging
2016
The aim of this study by Parsons et al. (2016) was to categorise the appropriateness of a comprehensive list of medications and medication classes for use in patients with advanced dementia.
It also examined the feasibility of undertaking a longitudinal prospective cohort study to collect clinical and medication use data. Using the categories developed, it aimed to determine the appropriateness of prescribing for nursing home residents with advanced dementia in NI. The study involved a Delphi Consensus study, a longitudinal prospective cohort feasibility study and the retrospective application of appropriateness ratings to medication data of residents with advanced dementia. Consensus on appropriateness was achieved for 87 of the 97 medications and medication classes included in the survey. At baseline, the average number of medications prescribed to nursing home residents was 16.2, approximately a quarter of which were considered by the expert panel to be never appropriate. All but one of the 15 residents participating had been prescribed at least one of these medications, and this did not change significantly over the course of the study. The study demonstrates that it is feasible to collect clinical and medication use data from this cohort of people.

Person-centred dementia care: a reality check in two nursing homes in Ireland

Colomer, J. and de Vries, J.
Dementia
2016
Person centred approaches to care (PCC) in Ireland are widely accepted at policy and management level. This study aimed to examine the reality of its practice.
Colomer & De Vries (2016) took a phenomenological approach to identify the perceptions and experiences of care workers in two nursing homes with a PCC policy. They found that most participants had not received training or education in PCC. They were vague and confused on questions examining their knowledge of PCC. Participants placed high value on training in practice, identifying team work as essential and highlighting the pressures of time and staffing constraints. The study found evidence of implicit knowledge of PCC but participants continued to describe aspects of good care within a task orientated framework. The authors acknowledge that the study is limited by size and recruitment from only 2 homes. However care assistant training in Ireland is standardised so they suggest it reflects issues across Ireland and a need to assess and most likely improve training.