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.

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

International Journal of Geriatric Psychiatry, 28(10)

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.

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

Aging and Mental Health

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

Journal of Advanced Nursing

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

Archives of Gerontology and Geriatrics

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

Clinical Genetics: An International Journal of Genetics, Molecular and Personalized Medicine

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

British Journal of Neuroscience Nursing

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

International Psychogeriatrics

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

Journal of Alzheimer’s Disease and Parkinsonism

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

Journal of Intellectual Disability Research

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.

Age and Ageing

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?

Age and Ageing

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

International journal of geriatric psychiatry

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

Neurosurgery and Psychiatry

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

BMC Neuroscience

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. 

Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes

Quince, C.
Alzheimer’s Society (UK)

This report documents the experiences of people with dementia living in care homes and the views of the public on care homes.

Three questionnaires were developed and the results used to inform the report: one for family members of people with dementia in care homes, one for staff in care homes in England, Wales and NI and one for people with dementia living in a care homes. The findings are supplemented with data from a 2012 YouGov poll on the attitudes of the general public to dementia and care homes. The report found that there were low expectations of the quality of life for those living with dementia in care homes across all groups surveyed, with a high percentage of adults expressing fear about potentially living in a care home in the future. It suggests more needs to be done to support people with dementia in the community and to promote choice and quality in care homes. While a high percentage of family carers rated the quality of care for the person with dementia as good, a lower percentage rated their quality of life as good. The overarching recommendation of the report is for government and the care sector to co-operate to improve public understanding of the potential for people with dementia to lead a good life in care homes, to challenge perceptions of poor practice, and promote care homes as appropriate places to care for people with dementia.

Attitudes to and Knowledge of Dementia in Northern Ireland

Dowds, L., MCPARLAND, P., DEVINE, P., Gray, A.M.

This report provides findings from a survey of the general public in Northern Ireland which explored attitudes to and knowledge of dementia.

The survey was carried out as part of the 2010 Northern Ireland Life and Times Survey (NILT) and the findings are reported under four headings: knowledge of dementia; perceptions of people with dementia; attitudes towards people with dementia; and capacity for independent living (as perceived by the public). The findings indicate that while there is a reasonable knowledge of dementia among the general public in NI, there are significant gaps in their knowledge. Stigmatising attitudes to people with dementia are common and there is little belief in the capacity of people with dementia to live independent lives. 

Report on Creating Dementia Friendly Communities

Alzheimer’s Society
Alzheimer Society of Ireland

There are currently seven communities across ROI designated as Dementia Friendly Communities under a Dementia Friendly Communities Initiative of the Alzheimer Society of Ireland.

The idea of creating dementia friendly communities was the subject of a 2012 report by the Alzheimer Society of Ireland. The report was based on work that the ASI undertook with a UK-based organisation Innovations in Dementia to gain a better understanding of the concept. The report briefly outlines the concept of dementia friendly communities and what it means to people with dementia. It reports on the issues arising from workshops that the Alzheimer Society of Ireland held with its staff and volunteers, outlines some of the initiatives aimed at making communities dementia friendly led by Alzheimer Society of Ireland staff and makes four recommendations for creating dementia friendly communities.      

Building Dementia Friendly Communities: A Priority for Everyone

Green, G., Lakey, L.
Alzheimer’s Society (UK)

Based on evidence on dementia friendly communities in England, Wales and NI and drawing on the perspective of the general public, people with dementia and their carers, this report provides guidance to communities wishing to develop dementia friendly communities from scratch and to those communit

ies where the work has already begun. It presents examples of dementia friendly initiatives and the barriers that exist within communities. The report defines a dementia friendly community as “one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them”, and identifies ten areas of focus: involving people with dementia; challenging stigma and building understanding; offering accessible and inclusive community activities; the potential of people with dementia; ensuring access to early diagnosis and post-diagnostic support;  providing practical support for engagement in community life; providing consistent and reliable travel options; ensuring the physical environment is accessible and easy to navigate; promoting respectful and responsive businesses and services.  

Normative CERAD-NP Performance among Community-Dwelling Older Adults in Ireland

Clinical Gerontologist

Highlighting the need for good dementia screening tools, Murphy (2012) aimed to provide normative data for the Consortium to Establish a Registry for Alzheimer’s Disease Neuropsychological (CERAD-NP; Morris et al., 1989) test battery, derived from an Irish-based sample.

This test battery has been found effective in distinguishing between Alzheimer’s disease, dementia, mild cognitive impairment and normal ageing. Ninety-nine participants deemed cognitively normal (MMSE=23 or above) undertook the battery of tests and results were then spilt according to education and age. No significant relationship between age and cognitive performance was found. In line with other studies there were some differences between lower and higher education levels supporting the concept of cognitive reserve related to higher education.  While norms in the Irish sample are generally in line with the US and Australia, a significant difference is found in the test, confrontational naming. The mean of the Irish sample is more than one standard deviation less than US and Australian samples, and over two standard deviations lower for the more highly educated categories.  The authors suggest that item familiarity is important and that local and cultural norms should be considered for this test. The authors conclude that CERAD-NP norms generated for US and Australian samples can be used in Ireland with the exception of confrontational naming.