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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.

Older people and legal advice - the need for joined up and creative approaches

DUFFY, J., BASU, S., PEARSON, K.C.
Journal of Social Welfare and Family Law
2012

Duffy et al. (2012) use a mixed methods approach to examine the potential of the Internet as a source of legal advice and information for older people.

 While the paper is not about people with dementia it highlights the need for timely, legal advice on diagnosis of dementia and the impact on carers who are often exhausted and do not have the energy to pursue legal issues.

Legal implications regarding self-neglecting community-dwelling adults: a practical approach for the community nurse in Ireland

BALLARD, J.
Public Health Nursing (Boston, Mass.)
2010

Ballard (2010) examines the legal implications for nurses working in the community when they encounter clients who are believed to be self-neglecting.  The paper examines the literature and reports on a case study where the client had dementia.

 Ballard highlights the complexity of capacity and competency, mandatory or discretionary reporting, trespass, homelessness and confidentiality concluding that it is often unclear where the community nurse’s legal responsibilities lie.

Sexuality and Dementia: Law, Policy and Practice

LENNOX, R., DAVIDSON, G.
Practice
2013

Lennox and Davidson (2013) identify areas of law, policy and practice in NI that could be improved to manage sexuality and dementia, particularly in care home settings.

 They highlight the difficulties of establishing capacity and consent and the need for more open discussion, debate and research in this area.  A particular gap identified in research is the lack of service user perspectives.  They conclude that staff must be better informed on legislation and policy and must receive better training and support on effectively managing sexuality and dementia.  

Diagnosis and disclosure of dementia – A comparative qualitative study of Irish and Swedish General Practitioners

MOORE, V., CAHILL, S.
Aging and Mental Health
2013

A cross-country study by Moore and Cahill (2013) explored the attitudes of a convenience sample of nine GPs in ROI and Sweden to dementia diagnosis and disclosure.

It found that GPs largely relied on patients or their families to bring memory problems to their attention, with some GPs expressing reluctance at broaching the subject with them. GPs in both countries reported avoiding using the word ‘dementia’ in conversations with their patients. GPs in ROI were less likely than their counterparts in Sweden to have received specialist training in dementia. There was a marked difference between GPs in ROI and Sweden with regard to their satisfaction with the quantity and quality of community care services. In both countries, GPs believed that societal misunderstandings of dementia are still widespread, so much so that dementia continues to be a stigmatised condition. 

Prevalence of frailty-related risk factors in older adults seen by community nurses

BALLARD, J., MOONEY, M., DEMPSEY, O.
Journal of Advanced Nursing
2013

This study by Ballard et al. (2013) describes the frequency of four frailty-related risk factors in a cohort of older adults visited by public health nurses in Dublin, ROI.  Suspected cognitive impairment was one of the frailty risk factors.

The other three were risk of malnutrition, falling, and dependence in ADL. The prevalence of suspected cognitive impairment, measured using the Hodkinson’s Abbreviated Mental Test, was found to be 16.4%, comparable to similar international studies. The study suggests that there is a need to implement a valid and standardised screening tool for use by public health nurses to help them identify older people with suspected cognitive impairment with a view to referral for further assessment for dementia or to rule out other causes negatively affecting memory such as vitamin B deficiency, thyroid disorders, depression, and delirium. 

Preferences of older people for early diagnosis and disclosure of Alzheimer’s disease (AD) before and after considering potential risks and benefits

ROBINSON, S., CANAVAN, M., O’KEEFFE, S.T.
Archives of Gerontology and Geriatrics
2014

Robinson et al. (2014) examined the preferences of older people for early diagnosis, disclosure and screening for Alzheimer’s disease.

Participants responded to one question each on diagnosis, disclosure and screening, which was followed by a brief discussion of the positive and negative factors that might be considered when deciding whether or not they would want investigation to see if they had AD or would want to be told that they have the condition. Participants were then asked to respond to the three initial questions again. The study findings support previous research suggesting that most people want to ‘know’ if they have dementia. However, the study reveals important differences in preferences for diagnosis, disclosure and screening. The main conclusion is that preferences differ depending on the question asked and preferences change when people are given the opportunity to consider the consequences. 

Uptake of Huntington disease predictive testing in a complete population

MORRISSON, P.J., HARDING-LESTER, S., BRADLEY, A
Clinical Genetics: An International Journal of Genetics, Molecular and Personalized Medicine
2014

Predictive or pre-symptomatic testing for Huntington disease, an inherited disease and one of the rarer causers of dementia, was the subject of an article by Morrison.

et al (2014), which using the Northern Ireland Huntington disease register estimated that the uptake of pre-symptomatic HD testing in a total population ranged from 12.3% to 14.6%, 10 years into a population testing protocol, and at 14.7% after 20 years of running a predictive testing programme.

The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature

MITCHELL, G., MCCOLLUM, P., MONAGHAN, C.
British Journal of Neuroscience Nursing
2013

The effects of disclosing the diagnosis to a person with dementia was the subject matter of a literature review conducted by Mitchell et al. (2013).

Only studies from the perspective of the persons with dementia were included and the majority (11/12) were framed within a naturalistic paradigm. The review findings show that feelings experienced by people recently given a diagnosis of dementia ranged from anxiety or fear to relief or the enablement of future planning. The perceived stigma surrounding a diagnosis of dementia was evident in the majority of studies in the review, as was the impact of losing the freedom to drive. 

A national survey of memory clinics in the Republic of Ireland

CAHILL, S., PIERCE, M., MOORE, V.
International Psychogeriatrics
2014

Cahill et al. (2014) provided information at a national level on the organization, location, resourcing, staff composition, treatments, waiting time, and numbers of patients attending 14 memory clinics in ROI for the year 2011.

They raised several questions about the goals and outcomes of memory clinics services, questions that are relevant to many countries around the world currently developing and expanding diagnostic and post-diagnostic services to address the increasing prevalence of dementia. 

Screening for Alzheimer’s disease in Downs Syndrome

O’CAOIMH, R., CLUNE, Y., MOLLEY, W.D.
Journal of Alzheimer’s Disease and Parkinsonism
2013

O’Caoimh, Clune and Molloy (2013) review instruments that are commonly used to screen for Alzheimer’s disease and explore the unique challenges of screening for the presence of Alzheimer’s disease in persons with Down syndrome.

The paper concludes that single, one-dimensional screening tools and opportunistic evaluations are insufficient for detecting dementia in persons with Down syndrome. The paper argues that a better approach is to use batteries of tests, incorporating informant questionnaires, direct neuropsychological testing, assessment of activities of daily living and behaviours, measured at baseline and reassessed at intervals. 

A prospective 14-year longitudinal follow-up of dementia in persons with Down syndrome

MCCARRON, M., NCCAILLON, P., REILLY, E., MULRYAN, N.
Journal of Intellectual Disability Research
2014

McCarron et al. (2014) report on a prospective longitudinal study of a convenience sample of people with Down syndrome (DS) attending a memory clinic within an Intellectual Disability service in Dublin.

Seventy-seven women with DS over the age of 35 were enrolled and assessed in a specialist memory clinic service for symptoms of dementia on an annual basis until death. Over a 14 year follow-up period it was found that almost 90% of the women had developed dementia. The mean age at which they developed dementia was 55 years. The study also assessed for co-morbidities and found that epilepsy was significantly more common in those with DS and dementia. 

The under-detection of cognitive impairment in Nursing Homes in the Dublin Area: The need for on-going cognitive assessment.

CAHILL, S., DIAZ-PONCE, A., COEN, R.F., WALSH, C.
Age and Ageing
2010

While it is known that the majority of people residing in long-stay care settings are likely to have dementia, it is not known how many actually receive a formal diagnosis of dementia. Cahill et al.

(2010) sought to address this gap, and at the same time test a methodology for detecting dementia among residents in long-stay care settings. A sample of 100 residents drawn from across four different nursing homes in Dublin was screened for cognitive impairment using MMSE and MoCA. One-third of the sample (32) had already received a diagnosis of dementia. However, a large proportion was first identified during the screening as having either a mild, moderate or severe cognitive impairment. Given that some of these residents are likely to have dementia, the study points to the under-detection of dementia in long-stay care settings in ROI and highlights the need for on-going assessment. 

Which part of the Quick mild cognitive impairment screen (Qmci) discriminates between normal cognition, mild cognitive impairment and dementia?

O’CAOIMH, R., GAO, Y., GALLAGHER, P.F., EUSTACE, J., MCGLADE, C., MOLLOY, D. W.
Age and Ageing
2013

Differentiating MCI from normal cognition and dementia was the topic of an article by O’Caoimh et al. (2013) who tested the assessment tool, Qmci.

They were interested in comparing the sensitivity and specificity of the subtests of the Qmci to determine which were best in differentiating MCI from normal cognition and dementia. They were also keen to refine and shorten the instrument. 

Anxiety and behavioural disturbances as markers of prodromal Alzheimer’s disease in patients with mild cognitive impairment

GALLAGHER, D., COEN, R., KILROY, D., BELINSKI, K., BRUCE, I., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
International journal of geriatric psychiatry
2011

In another article concerned with predicting conversion of MCI to Alzheimer’s disease, Gallagher et al. (2011) followed 169 patients with MCI over 27 months, 69 (43%) of whom converted to Alzheimer’s disease.

Neuropsychiatric symptoms were assessed with the Behavioural Pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. Survival analysis revealed that patients with MCI who had symptoms of anticipated anxiety and purposeless activity were approximately twice as likely to have earlier conversion to Alzheimer’s disease than patients with MCI who did not have these symptoms. This finding was independent of age, gender and education. However, since this finding was not independent of cognitive status at baseline, it may be, as the authors conclude, that the neuropsychiatric symptoms of anticipated anxiety and purposeless activity are markers of severity of disease rather than independent predictors of disease progression.    

Orientation to time as a guide to the presence and severity of cognitive impairment in older hospital patients

O’KEEFE, E., MUKHTAR, O., O’KEEFE, S.T.
Neurosurgery and Psychiatry
2011

Given the poor recognition of dementia and delirium in acute hospital setting and that disorientation to time is a very common feature of dementia and delirium, O’Keefe, Mukhtar and O’Keefe (2011) examined temporal orientation and its usefulness as a guide to the presence of deme

ntia or delirium among older in-patients and out-patents of an acute hospital in ROI. Of the 262 patients assessed on the same day by two different doctors, almost one-quarter were found to have dementia or delirium. The authors conclude that temporal orientation, properly recorded and interpreted, may provide a useful screening test for dementia or delirium in older hospital patients. 

Everyday episodic memory in amnestic mild cognitive impairment: a preliminary investigation

IRISH, M., LAWLOR, B.A., COEN, R.F., O’MARA, S.M.
BMC Neuroscience
2011

In their study, Irish et al.

(2011) aimed to characterise the nature of the memory impairment in MCI (using experimental tasks probing multiple domains of episodic memory function, including associative, spatial and everyday memory tasks that are analogues of real-world scenarios and are commonly encountered by individuals in their daily lives) and to obtain preliminary data regarding which of these tasks, if any, could potentially serve as an aid to identifying individuals with MCI in the prodromal stages of AD. Longitudinal follow-up data suggested that delayed associative memory performance at baseline may have some predictive utility for subsequent conversion to probable AD. This suggests that a simple Face-Name pairs test may have the potential to be a useful neuropsychological task for identifying individuals in the prodromal stage of AD. 

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.