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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.

Developing theoretical understandings of dementia and their application to dementia care policy in the UK

INNES, A., MANTHORPE, J.

Dementia

2013

Innes and Manthorpe (2013) critically assessed three influential theoretical perspectives (biomedical, psycho-social and critical social gerontology) in shaping dementia policy in different regions of the UK.

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They offer the policy document used in the consultation process of the national dementia strategy in NI as an illustrative example of policy on dementia that engages with person-centred principles, a hallmark of social-psychological perspectives on dementia. They argue that lessons from different theoretical perspectives need to be explicitly recognised, challenged and valued for a truly integrated dementia care policy model to evolve.

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.

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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.

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.

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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.

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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.

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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.

Planning dementia services: new estimates of current and future prevalence rates of dementia for Ireland

PIERCE, M., CAHILL, S., O'SHEA, E

Irish Journal of Psychological Medicine

2013

Pierce et al. (2013) present estimates on the prevalence of dementia at a national and local level for ROI based on the application of European prevalence rates to Census of Population data for 2006.

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Future projections of dementia were also calculated using population projections available from the Central Statistics Office. The estimates are that there were 41,740 people with dementia in ROI in 2006 and that the prevalence of dementia is expected to double over the next twenty years. Although there are limitations to such estimates, the data are useful for planning purposes and for awareness about dementia.

Informal cost of dementia care - a proxy-good valuation in Ireland

TRÉPEL, D.

Economic and Social Review

2011

Trepel (2011) focuses on the informal costs of dementia care and uses a proxy-good valuation method. Survey data gathered by the Alzheimer Society of Ireland to assess the dynamics of informal dementia care is used.

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Data on minimum and maximum hours provided in informal care in early, mid and late stages of dementia are presented, to which a general replacement value is applied. The results show that dementia care places a substantial demand on informal carers, with costs increasing with dementia progression. The study highlights the high costs of replacing an informal carer full-time, and the importance of targeting interventions for carers to minimise carer burnout.

The effects of dependence and function on costs of care for Alzheimer's disease and mild cognitive impairment in Ireland

GILLESPIE, P., O'SHEA, E., CULLINAN, J., LACEY, L., GALLAGHER, D., NI MHAOLAIN, A.

International journal of geriatric psychiatry

2012

Gillespie et al.

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(2012) using data from the Enhancing Care in Alzheimer’s Disease (ECAD) study estimate the costs of formal and informal care for a sample of people with Alzheimer’s disease and amnestic and mild cognitive impairment (MCI) living in the community in ROI over a six month period. They then undertook a multivariate statistical analysis to explore the effects of dependence and function on costs of care. They found that dependence and function of a person with dementia were both independently associated with the total cost of formal and informal care. As dependence on others increased, total costs increased. Conversely, an improvement in patient function led to a decline in the total cost of care.

Estimating the economic and social costs of dementia in Ireland

CONNOLLY, S., GILLESPIE, P., O'SHEA, E., CAHILL, S., PIERCE, M.

England)

2014

Connolly et al. (2014) using a cost of illness studies approach provide an estimate of the social and economic costs of dementia in ROI.

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The total cost of dementia is estimated to be €1.69bn per annum, 48% of which can be attributed to costs of informal care provided by family and friends to people with dementia living in the community. Another 43% is attributed to long-stay residential care with only 9% of the total costs attributed to formal health and social care costs. The results are broadly in line with international studies. The study highlights the significant costs associated with dementia in ROI and the very heavy burden that falls on the family caregivers.

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.

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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.

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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.

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(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.

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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.

An exploration of nursing home managers' knowledge of and attitudes towards the management of pain in residents with dementia

BARRY, H.E., PARSONS, C., PASSMORE, A.P., HUGHES, C.M.

International Journal of Geriatric Psychiatry, 27(12)

2012

Barry et al. (2012) explore the levels of knowledge and attitudes of nursing home managers towards the management of pain in residents with dementia.

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While most respondents evidenced a good knowledge of pain experience in residents with dementia, there was little indication that recognised pain assessment or management tools are used, and surprisingly few respondents had received recent training on pain management. The authors identify the need for further research to identify the factors affecting the prescribing of analgesics for people with dementia in care settings.

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

BARRY, H.E., PARSONS, C., PASSMORE, A.P., HUGHES, C.M

International Journal of Geriatric Psychiatry, 28(10)

2013

Barry et al. (2013) examine the knowledge and experience of community pharmacists in managing pain in people with dementia.

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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.

Dementia knowledge and attitudes of the general public in Northern Ireland: an analysis of national survey data

MCPARLAND, P., DEVINE, P., INNES, A., GAYLE, V.

International Psychogeriatrics, 24(10)

2012

Mc Parland et al. (2012) explored the knowledge and attitudes of the general public to dementia.

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They found that while there is a reasonable level of knowledge about dementia, the general public hold overwhelmingly negative attitudes towards dementia and that stereotypical, stigmatising views of people with dementia dominate understandings.

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.

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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.

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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).

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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.

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(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.

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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.

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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.

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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.

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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.

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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.