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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.

Occupational therapists' experiences and interventions when working with people with early stage dementia

CUMMINS, C., WARREN, A.
The Irish Journal of Occupational Therapy
2010

Cummins and Warren (2010) report on a qualitative study of six occupational therapists working in Ireland with people with early stage dementia.  They investigated their experiences and the type of interventions they used with this client group.

 Five themes emerged: reaffirming peoples’ right to be independent; looking beyond the diagnosis; facilitating occupational performance; enabling occupational identity; inaccessible and inadequate resources.  The authors suggest that the scope of work for occupational therapists in this area is vast and is taking place in a service landscape that is fragmented, inadequate and slow to respond.

Occupational therapy and dementia care: A survey of practice in the Republic of Ireland

CGRATH, M., O’CALLAGHAN, C.
Australian Occupational Therapy Journal
2014

McGrath and O’Callaghan (2014) used an online survey to consider practice among Occupational Therapists (OTs) in ROI working with people who have dementia, or carers of someone with dementia.

 They examine the reported practices in the context of a growing body of research in this area.  The authors report a gap between practice in Ireland and the research, for example, most therapists assess performance components rather than occupational participation; non standardised functional assessments were used; interventions to address behavioural and psychological symptoms were generally not used.  They recommend a global occupational therapy strategy for knowledge translation in dementia care and that future research should focus on developing and evaluating interventions to support translation of research to practice for people with dementia. 

Behavioural and psychological symptoms of dementia in primary care: a survey of general practitioners in Ireland

BUHAGIAR, K., AFZAL, N., COSGRAVE, M.
Mental Health in Family Medicine
2011

Using an anonymous questionnaire issued to GPs in North Dublin, Buhagiar et al. (2011) explored how GPs self-evaluate their confidence and knowledge on the detection and management of behavioural and psychological symptoms of dementia (BPSD).

GP confidence in diagnosing and managing BPSD was found to be low; all GPs reported having diagnosed and managed patients presenting with new-onset BPSD during the previous year but they were somewhat critical of their perceived skills in these areas, despite showing a high level of knowledge about management of BPSD. The authors conclude that GP confidence is likely to be compromised by a lack of guidance and support, limited resources and a health service framework that does not necessarily promote support from specialist services. The study argues that GPs need to be better supported by educational programmes on dementia care, and by a structured shared care approach between primary and specialist services, which would potentially lead to better patient and caregiver outcomes.  

A multicentre survey of acute hospital nursing staff training in dementia care

COFFEY, A., TYRRELL, M., BUCKLEY, M., MANNING, E., BROWNE, V., BARRETT, A., TIMMONS, S.
Clinical Nursing Studies
2014

This paper by Coffey et al.

(2014) reports the findings of a survey of 150 nurses in six acute hospitals in the southern region of ROI, and was conducted as part of a multicentre study of prevalence of dementia, course of dementia and long-term outcomes for people with dementia in acute hospitals. The survey found that 83% of nursing staff in the acute hospitals perceived that they had insufficient training in dementia care. This was despite the availability of a national dementia education programme across all care services and reflects poor uptake of dementia education offered in acute hospitals. However, the survey clearly indicated that nurses at ward level are aware of their poor dementia knowledge and are open to dementia training and the authors recommend strengthened awareness and management support for enhanced and specialist skills in dementia care for nurses practicing in acute care settings

Psychological trauma and fear for personal safety as a result of behaviours that challenge in dementia: The experiences of healthcare workers

SCOTT, A., RYAN, A., JAMES, I.A., MITCHELL, E.A.
Dementia: The International Journal of Dementia Research and Practice
2011

Scott et al. (2011) use a questionnaire to explore the psychological effects of exposure to aggression among healthcare workers in care homes in NI.  The evidence suggests that staff often fear for their safety and that experience did not impact on risk of assault.

 Workers were injured in just over half of the incidents and most assaults took place during care interventions.  Almost a quarter of the respondents met the criteria for ‘avoidance’, a characteristic of depersonalisation and the authors suggest care home staff may avoid ‘aggressive’ residents, thus risking compromised care.  They recommend education that focuses on the skills of communication, empathy, compassion and understanding, and the introduction of infrastructures and guidelines to support staff.

Education in geriatric medicine for community hospital staff

O’HANLON. S., LISTON, R.
British Journal of Community Nursing
2010

O’Hanlon and Liston (2010) used a questionnaire to assess the provision of education in geriatric medicine among community hospital staff.

 While not specific to dementia, the results indicated that staff found dementia and challenging behaviour to be one of the most difficult areas of their practice.  The authors conclude that geriatricians have little input to education in community hospitals and that staff would value regular, structured input.

Ageing, cognitive disorders and professional practice

FITZGERALD, D., KEANE, R., REID, A., O’NEILL, D.
Age and Ageing
2013

Fitzgerald et al. (2013) point to the increasing number of people over 65 years remaining in the workplace and the potential impact of cognitive decline, particularly among those in the liberal professions.

 They distributed a questionnaire to 22 regulatory and professional bodies to assess whether their policies and practices were ‘age attuned’.  None of the respondents had supports in place for older workers with chronic conditions such as dementia to continue to work safely and effectively, with over half stating that professionals were responsible for their own health and safety.  The authors suggest that a joint initiative between occupational health, geriatric medicine and old age could assist professional and regulatory bodies, and protect the public, pointing to a current independent model of support in the UK; The National Clinical Assessment Service.

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. 

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.