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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.

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.   

Lithium and prevention of cognitive impairment

ABIDAN, Z., COONEY, C., JACKSON, D., FREYNE, A.
Irish Journal of Psychological Medicine
2014

A retrospective study by Abidan et al. (2014) was undertaken in the context of increased interest in the neuro-protective effects of lithium and studies suggesting lithium may have a protective role in dementia.

Covering the period 1998 to 2007, it involved 29 patients attending a lithium treatment clinic who had been commenced on lithium treatment for affective disorders such as depression, bipolar disorder and schizoaffective disorder. The study reported that no new cases of dementia developed over a mean follow-up period of 38 months. Given the limitations, the authors tentatively suggest that lithium may have a protective effect against cognitive decline in people with affective disorder and in those with concurrent affective disorder and cognitive impairment.

Very rare and unusual causes account for about 5% of cases of dementia.  Variant CJD, a human prion disease, is one of the rarer causes of dementia, caused when meat from cattle infected with bovine spongiform encephalopathy (BSE) is eaten. It typically affects younger adults. ROI has the second highest rate of vCJD in the world, with four cases reported to date. To complement existing measures adopted to contain the risk of vCJD transmission from transfusion of blood or blood products originating from subclinical carriers of the disease, prion-removing filters have been developed to reduce the risk of vCJD transmission. 

Cost-effectiveness of prion filtration of red blood cells to reduce the risk of transfusion-transmitted variant Creutzfeldt-Jakob disease in the Republic of Ireland

TELJEUR, C., FLATTERY, M., HARRINGTON, P., O’NEILL, M., MORAN, P.S., MURPHY, L., RYAN, M.
Transfusion, 52(November)
2012

This study by Telijeur et al.

(2012) evaluated the cost-effectiveness of implementing a policy of prion filtration of red blood cells in ROI, based on a literature review on efficacy and safety of prion filters, a cost effectiveness analysis and analysis of two models of prion filtration. It concluded that the introduction of prion filtration for all transfusion recipients was not cost-effective by traditional standards of cost-effectiveness, whilst acknowledging that factors other than cost-effectiveness may influence the decision on whether or not to implement a policy of prion filtration of red blood cells in ROI.  

Correlates of frailty In Alzheimer’s Disease and Mild Cognitive Impairment

NI MHAOLAIN, A., GALLAGHER, D., CROSBY, L., RYAN, D., LACEY, L., COEN, R., BRUCE, I., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
Age and Ageing, 40(5)
2011

Ni Mhaolain et al. (2011) examine the relationship between frailty and a range of domains including age, comorbidity, course of illness, cognitive impairment, functional limitations and abnormalities of behaviour in a group of patients with AD and MCI.

The study found that 51% of the patients were robust or not-frail, with 49% at an intermediate or complete stage of frailty.  It suggests that escalating frailty is positively associated with increasing number of medical comorbidities and advancing age rather than being a marker of cognitive decline and severity of illness. The study suggests that optimising the management of co-morbid illness in people with dementia may play a role in minimizing the health impact of frailty in this group. 

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.

Irish National Dementia Educational Needs Analysis

Irving, K., Piasek, P., Kilcullen, S., Coen, A-M., Manning, M.
HSE, DCU, The Atlantic Philanthropies
2014

Building on the work by De Siún and Manning (2010a), this report by Irving et al. (2014) presents the results of a Dementia Educational Needs Analysis carried out in ROI in 2013/2014.

In contrast to De Siún and Manning (2010a), this report focuses on the information, training and education needs of a much wider range of stakeholders starting with the person with dementia, and including people in their care-giving network, healthcare system and the broader community in which they live. The report outlines the major gaps in education and provides recommendations for future educational and service reform. It identifies seven priority areas which are to provide the focus for the development of education and training programmes.  

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. 

Integrated Care Pathways for People with Dementia: Exploring the Potential for Ireland and the forthcoming National Dementia Strategy

Irving, K., McGarrigle, L.
Alzheimer Society of Ireland
2012

In this expert policy paper by Irving and McGarrigle (2012) and a book chapter bearing the same title (Irving et al., 2013), Integrated Care Pathways (ICPs) are defined as instruments designed to map out the direction of clinical and administrative activities for all care professionals working wi

th people who have a specific disease such as dementia. They scope out what Integrated Care Pathways are and consider the practical application of Integrated Care Pathways. They summarise the evidence pointing to the benefits of Integrated Care Pathways and outline the challenges that need to be addressed if Integrated Care Pathways are to be successful. They compare and contrast two cases studies, one from England and one from the Scotland, before looking at the relevance of Integrated Care Pathways for ROI, following which they highlight key issues relating to the health care system and the role of case management that need to be addressed if Integrated Care Pathways are to be successfully introduced in ROI. Cahill (2013), writing about dementia and integrated care, argues that although integrated care services is widely promoted in public policy in ROI, the evidence suggests that integrated care for people with dementia is more of an aspiration than a reality. She identifies several changes that are needed in service provision for integrated care to become a reality for people with dementia.    

Planning for the Future Project Initiating End of Life Discussion with People with Dementia, Final Report Phase 1 (Undated)

Hayden, C., Parke, M., Lynch, M., Kelly, S.
Irish Hospice Foundation, HSE
2015

This report produced by the Irish Hospice Foundation and the HSE documents the results of a joint project based in ROI between a residential care facility for older people and a specialist palliative care in-patient unit that aimed to develop a framework to support staff to engage in end of life

care discussions with residents.  The project took an action research approach and includes a series of planned actions to address: staff difficulties in initiating discussion; confidence in engaging with residents on this topic and on dealing with difficult situations; recording information gathered;  recognising the dying phase; finding clarity between palliative care and end of life care; supporting families.  A post project evaluation was completed six months later and a series of future action plans is included.

Building Consensus for the Future: Report on the Feasibility Study on Palliative Care for People with Dementia

Alzheimer’s Society, Irish Hospice Foundation
Alzheimer Society of Ireland
2012

This report documents a joint partnership project in ROI between the Irish Hospice Foundation and The Alzheimer Society of Ireland that aimed to build consensus on palliative dementia care.

The report is set in the context of international and national policy, reviews examples of best practice, societal and service challenges and incorporates the perspectives of family members and health care professionals. A series of recommendations are presented thematically: services; education and training; research; policy and advocacy.

My Life until the End: Dying Well with Dementia

Lane, M.
Alzheimer’s Society (UK)
2012

This report by the Alzheimer’s Society (UK) describes the policy landscape in England, Wales and NI relating to end of life and palliative care for people with dementia (see Living Matters, Dying Matters in the policy section of this review), summarises existing evidence, including examples of go

od practice and provides new evidence in the form of interviews with carers and people living with dementia. Seven key areas relating to dementia and end of life are highlighted as problematic: lack of public awareness and discussion about death and dying; provision of dignified care for people with dementia at the end of life; difficulty with communication affecting a person’s ability to articulate basic needs such as pain, discomfort, hunger and thirst; implications of the uncertain nature of dementia progression for planning palliative care including withholding and withdrawing treatment; little regard for emotional or spiritual support; differences in the quality of experience related to place of death - hospital, home, care home or hospice. The report concludes that the current health and social care system does not meet the needs of people with dementia at the end of life and makes a series of recommendations linked to the seven key areas listed above.

Opening Conversations: Developing a Model for the Alzheimer Society of Ireland of best practice palliative care interventions for people with dementia and their families

MacConville, U.
Alzheimer Society of Ireland
2011

This was a small-scale qualitative research project based in ROI that aimed to develop a model of best-practice palliative care interventions for people with dementia, integrating palliative care interventions into Alzheimer Society of Ireland service planning.

 Two key areas are the focus of the model: the transition from Alzheimer Society of Ireland services to long term care and end of life care.  The report produced by the Alzheimer Society of Ireland makes fourteen recommendations addressing: raising awareness; removing barriers to a clear diagnosis; providing a continuity of care; active management of the transition of care; addressing end-of-life care needs; and supporting family members and carers.

The Development of End of Life Care Standards for People with End Stage Dementia (Undated)

CAHILL, S., DORAN, D., WATSON, M.
CARDI
2015

This report documents a study comprising two phases; phase one completed a qualitative enquiry into how 16 older spouse caregivers had experienced their spouses’ end of life care in a long stay care environment in ROI and NI.

Phase two involved the development and dissemination of draft guidelines to assist Nursing Homes to develop policies and practices on end of life care for residents. The draft guidelines were then amended based on feedback from health professionals based in both jurisdictions. Most spousal caregivers participating in the study were satisfied with the level of care received by their spouse. The draft guidelines focused on five key areas: person-centred care; good personal care; staff training; a partnership approach with the nursing home fully integrated into local health care systems; a shared approach to care.

Continuing to Care for People with Dementia: Irish Family Carers’ Experience of their Relatives Transition to a Nursing Home

Argyle, E., Downes, M, Tasker, J.
Alzheimer Society of Ireland
2011

The majority of people with dementia live in their own homes and family carers provide the main bulk of care for them. However, a time often comes when a person with dementia has to move into a long-stay care setting.

But what are the experiences of family carers in ROI when a relative with dementia moves into a long-stay care setting? This is the primary focus of this research by Argyle, Downes and Tasker (2011). It found a range of factors accumulated and contributed to the decision to pursue long-stay care, with health professionals often being the one to initiate discussions around this.  Family carers experienced conflicting emotions, from relief through to more painful emotions of guilt, grief and loneliness, with varying intensities. How well they adjusted to their relatives’ admission to long-stay care was influenced by the perceived quality of the long-stay care setting, their familiarity with it and receipt of emotional and spiritual support. Following transition, the carers’ role was characterised by both continuity and change. The research indicated that all carers wanted to continue to participate in the long term care of their relative and reported that good lines of communication with staff, having information and education about dementia and dementia care and having ongoing emotional support were essential. 

Exploring nursing staff views of responsive behaviours of people with dementia in long‐stay facilities.

Clifford, C. and Doody, O.
Journal of psychiatric and mental health nursing
2017
This qualitiative study explored nurses views on supporting people with dementia and responsive behaviours in long term care facilities. Participants were able to discuss general reasons for responsive behaviours but gave less consideration to potential physical reasons.
They were committed to a person centred approach but were frustrated by the lack of time and resources to enable such an approach, feeling unsupported by management. This was highlighted in evidence of a wide range of person centred interventions that are favoured over chemical or physical restraint, but difficult to implement in practice due to lack of resources or time. Dementia education and trainng were viewed favourabley but participants emphasised the need for this to be ongoing. They also recognised the potential impact of different care environments on both a person with dementia's behaviour and on the approach taken by staff. The authors argue for a multi disciplinary, collaborative approach to dementia training and for better support for staff working with people with dementia and responsive behaviours.

Developing an educational dvd on the use of hand massage in the care of people with dementia: An innovation.

Tuohy, D., Graham, M.M., Johnson, K., Tuohy, T. and Burke, K.pp.299-303.
Nurse education in practice
2015
Tuohy et al. (2015) describe the process of developing an educational DVD on the use of hand massage in the care of people with dementia. The authors refer to evidence that hand massage can provide physiological benefits for people with dementia.
They describe the collaborative nature of the project which took 10 months to complete. The DVD provides an overview of hand massage and a demonstration. The authors argue that the DVD responds to new developments in learning and to the time pressures on professionals and carers, particularly in attending face to face training. Since its launch in 2012, hand massage has been introduced to residential settings for people with dementia and a number of workshops provided for health professionals and carers.