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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.

Living Matters, Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland

Dept. of Health, Social Services and Public Safety
2010

This strategy identifies palliative and end of life care as a continuum of care that can evolve as a person’s condition progresses.

 The five year Strategy sets out a vision and direction for service planning and delivery, within the existing legal framework.  The strategy includes dementia among the chronic conditions considered and refers to the work already completed in “Dementia; NICE-SCIE Guideline on Supporting People with Dementia and their Carers in Health and Social Care” (NICE 2006). 

Reconciling mental health recovery with screening and early intervention in dementia care

IRVING, K, LAKEMAN, R
International Journal of Mental Health Nursing
2010

Irving and Lakeman (2010) acknowledge that the concept of person-centred care has become a catchphrase for good care but has not resulted in improvements in care for everyone with dementia.

They take a critical look at the concept of recovery as used in mental health and its potential application to dementia care. They explore the similarities and differences between it and person-centred care, the difficulties of using the concept of recovery in the context of a degenerative condition such as dementia and take a closer look at its relevance for dementia screening and early intervention. They conclude that the recovery movement has much to offer dementia care and vice versa. 

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.

Education, occupation and retirement age effects on the age of onset of Alzheimer’s disease

LUPTON, M.K., STAHL., D., ARCHER, N., FOY, C., POPPE, M., LOVESTONE, S., HOLLINGSWORTH, P., WILLIAMS, J., OWEN, M.J., DOWZELL, K., ABRAHAM., R., SIMS, R., BRAYNE, C., RUBINSZTEIN, D., GILL., M., LAWLOR, B.A., LYNCH, A., POWELL., J.F
International journal of geriatric psychiatry
2010

This study by Lupton et al. (2010) is based on data from a sample of 1,320 people with probably Alzheimer’s disease from the UK and the ROI, who were primarily recruited to investigate candidate genes that may increase susceptibility to Alzheimer’s disease.

Data was analysed (using multiple regression analysis) to determine the effects of early life education, midlife employment and later life age of retirement on the age of onset of Alzheimer’s disease. This study found no effect of education or employment on the age of onset of Alzheimer’s disease, but found a significant effect of a later retirement age in delaying the onset of Alzheimer’s disease.   

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.

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.

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. 

Detecting prodromal Alzheimer’s disease in mild cognitive impairment: utility of the CAMGOG and other neuropsychological predictors

GALLAGHER, D., MHAOLAIN, A., COEN, R., WALSH, C., KILROY, D., BELINSKI, K., BRUCE, I., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A
International journal of geriatric psychiatry
2010

Gallagher et al.

(2010) tested the usefulness of the Cambridge cognitive examination (CAMCOG), a well-established and widely used mini-neuropsychological battery, in detecting prodromal Alzheimer’s disease, and in particular which subtests of CAMCOG are predictive of conversion from mild cognitive impairment (MCI) to Alzheimer’s disease. The study compared CAMCOG and its subtests with an extended version of the delayed word recall (DWR) test. They followed 182 patients with MCI over a mean duration of 26 months, during which 75 (41%) converted to Alzheimer’s disease. The study found that tests of episodic memory were most predictive of conversion to Alzheimer’s disease and the composite memory score contained within CAMCOG was superior to tests of other cognitive domains assessed in CAMCOG. While the DWR test achieved the best predictive accuracy of conversion from MCI to Alzheimer’s disease, the CAMCOG composite memory score perfomed similarly well.  

The effects of music therapy for older people with dementia

WALL, M., DUFFY, A.
British Journal of Nursing
2010

Wall and Duffy (2010) review the literature on the effects of music therapy for older people with dementia.

 They found that music therapy had a positive impact on the behaviour of people with dementia but that there were methodological limitations in all thirteen studies reviewed.  Most of the studies were quantitative and the authors recommend larger sample sizes to allow for generalisation of results. They also suggest there is a need for more qualitative studies.

Life story work in practice: aiming for enduring change

GIBSON, F., CARSON, Y.
Journal of Dementia Care
2010

Gibson and Carson (2010) report on a Northern Ireland Trust Project to establish life story work for people with dementia in residential and day care settings.

 They document the initial enthusiasm that many creative projects are greeted with, only to fall in the face of obstacles such as a newer ‘fad’ promising better, cheaper results. They document the work to engage management and staff with a view to establishing a more durable project.  Staff reported positively on the programme but the single greatest obstacle was lack of time, as already reported in Cooney et al.’s study (2014). The authors suggest the project has highlighted the complexity of establishing enduring creative projects, even where they are regarded positively. 

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. 

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.     

Supporting persons with Down syndrome and advanced dementia: challenges and care concerns

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K., DUNN-LANE, J.
Dementia
2010

In this paper, McCarron et al.

(2010a) highlight the complexity of providing good end of life care for people with an intellectual disability and dementia and the need for further training and support, suggesting a more collaborative approach between Specialist Palliative Care Services and Intellectual Disability Services.  

Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K.
Journal of Policy & Practice in Intellectual Disabilities
2010

This paper by McCarron et al. (2010b) discusses three key themes emerging from focus groups with staff working in ID care settings and a specialist palliative care provider in ROI supporting persons with an intellectual disability and dementia at the end of life.

The three key themes were: readiness to respond to end of life care needs; the fear of swallowing difficulties and environmental concerns, and ageing in place.

Research article: "it's complicated to get someone off the road" - spouses' experiences of driving cessation

WALL, O., CHARD, G.
Irish Journal of Occupational Therapy
2010

Wall and Chard (2010) document a very specific aspect of the caregiver experience in an article exploring spouses’ experiences when the person with dementia ceases to drive as a result of their condition.

 They found that responsibility regarding driving cessation rests with family caregivers and that there is little support from other stakeholders.  It is a highly charged emotional event for the spouse that results in a loss of independence for the person with dementia. For an interesting commentary on this issue see “More Mad and More Wise” (O’Neill, 2012).

More Mad and More Wise” (O’Neill, 2012).

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.    

Dementia 2010: The Economic Burden of Dementia and Associated Research Funding in the UK

Alzheimer Research Trust
Alzheimer Research Trust
2010

The Alzheimer Research Trust in the UK commissioned the Health Economics Research Centre at the University of Oxford to undertake this cost of illness study to evaluate using a societal perspective the combined costs of dementia and Alzheimer’s disease (AD).

Overall, the study estimated the cost of dementia in 2008 to be £23 billion in terms of health and social care, informal care and productivity losses in 2008. Of these costs, 5% were attributed to healthcare, 40% to social care and 55% to informal care, with productivity losses accounting for less than 1% of total costs. The study also estimated the costs of cancer and compared the costs of dementia and cancer, dementia and coronary heart disease (CHD) and stroke. It estimated the costs of dementia to be the highest, followed by cancer, CHD and stroke, with the costs of dementia greater than the combined costs of cancer and CHD.  In addition, the study investigated the allocation of research funds by governmental organisations and charities in the UK. It found that despite the high economic cost of dementia, research funding is highly dominated by cancer followed a considerable way behind by CHD and offers some suggestions to explain the underfunding for dementia research. 

An Economic Perspective of Dementia Care in Ireland: Maximising Benefits and Maintaining Cost Efficiency

TRÉPEL, D.
Alzheimer Society of Ireland
2010

Trepel (2010) examines the international evidence on dementia in relation to prevention, care and cure and considers how the evidence can be used to inform decisions about spending on dementia that will maximise benefits to society and at the same time maximise optimal cost efficiency, and in par

ticular the implications for ROI. He concludes that investing in services and interventions to support carers is essential to achieving cost-effectiveness in dementia care. 

Attitudes to and Knowledge of Dementia in Northern Ireland

Dowds, L., MCPARLAND, P., DEVINE, P., Gray, A.M.
ARK NI
2010

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. 

National Dementia Education and Awareness Programme: Evaluation of the Pilot Project

De Siún, A., Manning M.
Health Service Executive
2010

Based on the findings of the above Dementia Education Needs analysis and recommendations from a literature review, a generic dementia education and awareness programme for staff caring for older people with dementia in community, acute and long-stay care settings in ROI was developed fo

r delivery over three and a half education days. Its aim was to provide participants with the knowledge, skills and attitudes required to deliver high quality, person-centred care to people with dementia. The programme was piloted in two areas. An evaluation was carried out to capture the views of participants and facilitators on the content and delivery of the programme, the impact of the programme on staff knowledge and attitudes to dementia, and the views of managers on the impact of the programme on their organisation/area of work. The evaluation indicated that the programme has the desired impact on staff knowledge and attitudes. The content and delivery of the programme were evaluated very positively by both participants and facilitators who valued the experience of inter-disciplinary learning. Overall the programme was found to have provided an excellent model for improving staff knowledge, attitudes and care practices for dementia in ROI.

National Dementia Project: Dementia Education Needs Analysis Report

De Siún, A., Manning, M.
Health Service Executive
2010

In order to address the knowledge deficits of care staff in ROI regarding dementia through a three-year National Dementia Education Programme funded by the HSE, a decision was taken to first ascertain what the knowledge deficits were through an educational needs analysis.

De Siún and Manning (2010) collected data from nurses and care attendants via postal questionnaires and focus groups. They found very low levels of dementia care training among both nurses and care attendants. Responses to the Approaches to Dementia Questionnaire, which aims to capture attitudes to people with dementia revealed that respondents scored quite well on the Person-centred dimension, which refers to the way in which people with dementia are responded to as unique individuals with the same value as any other person, but scored less well on the Hope dimension, which reflects a sense of optimism/pessimism towards the abilities and the future of people with dementia. The report concluded that there is a need for a core generic dementia education programme focusing on both personal attitudes and general care practices to be offered and one that could be provided on a modular basis to staff in all areas of work. 

Supporting People with Dementia Using Pervasive Healthcare Technologies

Mulvenna, M.D., Nugent, C.D.
Springer-Verlag
2010

Chris Nugent of the University of Ulster is one of the editors of this book, which describes a research project called COGKNOW, undertaken by a multidisciplinary team of researchers from across seven European countries including Northern Ireland.

The focus of the book is on how pervasive healthcare technologies can support people living with dementia. It is divided into four main parts. The first provides the background to the research and covers medical aspects of dementia, the state of the art in electronic assistive technologies for people with dementia, a review of ICT-based services for identified unmet needs in people with dementia and issues related to privacy, ethics and security when designing technologies for people with dementia. The second part focuses on the role of the user in the design process. The third describes different aspects of the technology used in the COGKNOW project to develop solutions to identified unmet needs. The fourth focuses on the evaluation and assessment of cognitive prosthetics, including the process of evaluation developed in the project and how the team measured the impact of the cognitive prosthetics on the daily life of people with dementia. The book concludes with an overview of the future state of the art in using technology to help people remain functionally independent and in their residence of choice.