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.

Access to community care for people with dementia and their informal carers.

Bieber, A., Stephan, A., Verbeek, H., Verhey, F., Kerpershoek, L., Wolfs, C., de Vugt, M., Woods, R.T., Røsvik, J., Selbaek, G. and Sjölund, B.M.
Zeitschrift für Gerontologie und Geriatrie
This study used a case vignette approach to explore the structures and procedures associated with accessing formal dementia care across 8 European countries.
While existing research suggests dementia specific care services are crucial, the study found that typical pathways to care across participating countries are not dementia specific. Informal carers were found to drive help seeking on behalf of the person with dementia. G.P.s were identified as key across most countries but did not meet expectations and were found to lack knowledge on supports available. Memory clinics are part of dementia care structures across most countries but the authors point to conceptual differences and variance in usefulness depending on National Health systems. Finance is a factor in accessing formal care with Ireland identified as one of the countries where out of pocket expenditure is a serious barrier. For an example of best practice the authors point to Norway, where a multi professional team approach is combined with a key reference person.

Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries

Broda, A., Bieber, A., Meyer, G., Hopper, L., Joyce, R., Irving, K., Zanetti, O., Portolani, E., Kerpershoek, L., Verhey, F. and de Vugt, M.
BMC health services research
This paper by Boda et al. (2017) reports on a piece of work carried out as part of the Access to Timely Formal Care (ActifCare) project.
Interviews with policy makers and political decision makers were completed across eight countries to establish their perspectives on access to formal care for people with dementia and their carers. A key theme to emerge was the need for a co-ordination role to help people navigate the care system. Access to information was also identified as an essential precursor to accessing services. Experts were agreed that formal services should be person centred, tailored to individual needs and multidisciplinary. Public awareness was also identified with experts highlighting the need for educational and mass media campaigns targeting improved awareness and a reduction in stigma. The authors conclude that the experts are well acquainted with current discussions and approaches to improving dementia care.

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice.

Kerpershoek, L., de Vugt, M., Wolfs, C., Woods, B., Jelley, H., Orrell, M., Stephan, A., Bieber, A., Meyer, G., Selbaek, G. and Handels, R.
Aging & Mental Health
This paper is one of a number reporting on the Access to Timely Formal Care (Actifcare) study. It reports on the domains and levels of need among 451 community dwelling dyads of people with dementia and their caregiver.
The paper also discusses the relationship between needs and quality of life (QOL) from the perspective of the person with dementia and their caregiver. The greatest needs reported by people with dementia related to company, information and day time activities but overall they reported less unmet needs than their caregivers or the researchers, suggesting a significant difference in perspective. The authors suggest this may be linked to the person's efforts to remain autonomous resulting in an underplay of needs or it may be related to a lack of insignt on the part of the person with dementia. Most met needs are found to be met through informal care and the study found that as care needs increased there was a decrease in carer's QOL. The authors comment on the potential for differing perspectives among dyads to create conflict and the need for professionals to be trained in this area. They also sugest the identifed domains should be the primary focus for interventions aiming to improve quality of life.

Key stakeholders’ experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review

O’Shea, E., Timmons, S., O’Shea, E., Fox, S. and Irving, K.
BMC geriatrics
In this qualitative systematic review O'Shea et al. (2017) discuss five key conccepts in key stakeholders' experiences of respite; transitioning to service use, expanding organisational capacity, dementia care quality, bilding a collaborative partnership and dyad restoration.
They found broad agreement on the need to improve access to respite and to provide bettwe support during the transition. A lack of staff, resources and money were identified as barriers to the provision of quality care, with the need for better governance and training also highlighted. Organisational culture emerged as perhaps the most significant factor in terms of implementing a more person centred, responsive service. The authors argue that respite must provide restorative care for both the person with dementia and their caregiver and that this may require a reconceptualisation of the service. They recommend future research should explore alternative or modified models for this service.

Does admission to a specialist geriatric medicine ward lead to improvements in aspects of acute medical care for older patients with dementia?

Briggs, R., O'Shea, E., Siún, A., O'Neill, D., Gallagher, P., Timmons, S. and Kennelly, S
International journal of geriatric psychiatry
Briggs et al. (2017) review data from the Irish and Northern Irish Audits of dementia care in acute hospitals to establish whether being admitted to a specialist Geriatric medicine (GM) ward could result in improved acute medical care for someone with dementia.
Less than one fifth of patients admitted were cared for in a specialist GM ward. Overall both types of wards (GM and non GM) performed poorly in the recording of relevant information, discharge planning and delirium assessment, although delirium assessment was slightly better in the GM ward. There were no statistically significant differences between wards in assessment of nutrition, continence, pressure care, eating and drinking. The Irish National Clinical Programme for Older People has identified access to specialist wards as key to the acute care of frail older people and the authors support this but highlight the importance of remaining self-critical and striving for improvement.

Integrated Care Pathways and Care Bundles for Dementia in Acute Care: Concept Versus Evidence

Sullivan, D.O., Mannix, M. and Timmons, S.
American Journal of Alzheimer’s Disease and Other Dementias
This paper by O’Sullivan et al. (2017) presents the results of a literature review to identify evidence on the effectiveness of integrated care pathways (ICPs) and/or care bundles for dementia care in the acute hospital sector.
While ICPs for dementia care were identified, none that focusd on dementia care in an acute hospital setting were found. The authors also found limited research on the effectiveness and economic evaluation of ICPs generally.

The detection, diagnosis, and impact of cognitive impairment among inpatients aged 65 years and over in an Irish general hospital – a prospective observational study

Power, C., Duffy, R., Bates, H., Healy, M., Gleeson, P., Lawlor, B.A. and Greene, E..
International Psychogeriatrics
In a prospective observational study Power et al. (2017) assessed patients admitted to an Irish Hospital over a two week period for delirium and cognition. They found high levels of cognitive impairment (48%) with 27% meeting the DSM-IV criteria for dementia and 21% meeting the criteria for MCI.
The authors discuss the discrepancy evidenced in this study and others between prevalence and recognition of dementia among clinicians. This is particularly significant since poorer outcomes are evidenced for people with dementia who had longer hospital stays and were more likely to be readmitted in the next 12months. The authors conclude that significant investment is required in education and resources and this must take place within a wider cultural change in both institutions and society.

Care of Patients with Dementia in an Acute Trauma and Orthopaedics Unit

McCorkell, G., Harkin, D., McCrory, V., Lafferty, M. and Coates, V.
Nursing Standard
This paper by Mc Corkell et al. (2017) reports on a piece of action research that set out to improve awareness of the needs and care of patients with dementia in an acute trauma and orthopaedics unit.
In an audit of patient records the authors found inadequate recording of the type of dementia diagnosed, inadequate pain assessment and administration of pain relief and minimal recording of communication with families. Post audit, ward nurses collaborated to design a dementia toolkit that addressed the issues identified in the review. The toolkit included advice on communicating with people with dementia and family members, use of a cognitive impairment pain assessment tool and information on assessment and management of delirium. On introduction, it became evident that ward staff required more education and training to effectively use the toolkit. This was provided and a further audit, six months later, indicated significant improvement in awareness and care of patients with dementia. For example, post implementation; a cognitive impairment pain assessment tool had been used with 95% of patients. The authors suggest the toolkit is discreet and inexpensive while supporting staff to meet the needs of people with dementia.

The diagnosis if delirium superimposed on Dementia; An emerging challenge

Morandi, A., Davis, D., Bellelli, G., Arora, R.C., Caplan, G.A., Kamholz, B., Kolanowski, A., Fick, D.M., Kreisel, S., MacLullich, A. and Meagher, D.
Journal of the American Medical Directors Association
Delirium is defined in both DSM-5 and ISD-10 but no criteria is provided for it's assessment, nor for the assessment of pre existing cognitive impairment.
This lack of standardised assessment has clinical and research implications and prompted the establishment of a task force to review any evidence of DSD diagnosis, clarify key elements of diagnosis and formulate a path for the future direction of research in this area. Morandi et al. (2017) describe key features of DSD, such as attentional deficits, the role of arousal and motor fluctuations, reviewing related approaches to assessment.. They also discuss the potential overlap between symptoms of specific dementias and delirium, particualry dementia with Lewy bodies. They conclude with a suggested framework for improving diagnosis of DSD and details of the research needed to support the framework.

Detecting delirium superimposed on dementia: diagnostic accuracy of a simple combined arousal and attention testing procedure.

Richardson, S.J., Davis, D.H., Bellelli, G., Hasemann, W., Meagher, D., Kreisel, S.H., MacLullich, A.M., Cerejeira, J. and Morandi, A.
International Psychogeriatrics
As discussed in another paper in this review, it is difficult to diagnose delirium where dementia already exists. Richardson et al. (2017) hypothesised that a combined arousal and attention testing procedure could accurately detect delirium superimposed on dementia (DSD).
Patients over 70yrs of age were recruited from five hospitals across Europe, including Ireland. Attention was measured using a vigilance task and arousal was measured using OSLA (Tieges et al., 2013). The authors found that this combination of tests specifically identified delirium in patients with and without dementia, with high levels of accuracy. Acknowledging limitations such as small sample size and the fact that only prevalent delirium was examined, the authors argue that the findings suggest such an approach could have major clinical utility.

Exploring dementia management attitudes in primary care: a key informant survey to primary care physicians in 25 European countries

Petrazzuoli, F., Vinker, S., Koskela, T.H., Frese, T., Buono, N., Soler, J.K., Ahrensberg, J., Asenova, R., Boreu, Q.F., Peker, G.C. and Collins, C.
International Psychogeriatrics
Petrazzuoli at al. (2017) report the findings from a key informant survey of primary care physicians (PCPs)in 25 European countries, including Ireland.
Most physicians were found to willing and actively involved in both dementia investigation and assessment but time constraints were a major barrier. When it came to the management of dementia and particularly drug prescription, there was considerable variability between countries with Ireland being one of only five countries where primary care physicians have the right to start treatment with memantine and cholinesterase inhibitors. The authors also found variation in dementia management within countries. They conclude that attitudes to dementia work up are affected by the official rules of the country and that where PCPs are not entitled to prescribe dementia drugs, they are more likely to refer patients to secondary specialist care.

Nursing home manager's knowledge, attitudes and beliefs about advance care planning for people with dementia in long‐term care settings: a cross‐sectional survey.

Beck, E.R., McIlfatrick, S., Hasson, F. and Leavey, G
Journal of Clinical Nursing
Beck et al. (2017) report on the results of a survey examining nursing home managers’ knowledge, attitudes and beliefs about advance care planning (ACP) within their homes for people with dementia. Analysis of the results is informed by the theory of planned behaviour.
The authors found a lack of knowledge about ACP and dementia that affects any move to implement ACP within the nursing home. Managers expressed concerns about both the willingness and the capacity of people with dementia to participate in ACP. Participants were reluctant to use ACP terminology preferring to set any discussion in the context of palliative or future care. Overall there was evidence of a lack of leadership and ownership of ACP from participating nursing home managers. The authors conclude that managers need supported with resources to improve knowledge of both dementia and ACP.

Public knowledge and understanding of dementia-evidence from a national survey in Ireland.

Glynn, R.W., Shelley, E. and Lawlor, B.A.
Age and Ageing
This paper reports the results of a national survey that assessed the level of knowledge among the Irish general public on the relationship between ageing and dementia and of risk and protective factors.
39% of participants were confident they could differentiate between the early signs of dementia and normal ageing. One in five believed that those under 65yrs don't get dementia and 23% beleived that only old people get dementia. When it came to understanding that dementia risk could be modified, less than half knew there were things they could do to modify their risk. Some socio demographic variables influenced responses here but even those with better knowledge had considerable gaps in their knowledge. Younger people were more likely to answer incorrectly and participants who knew or had known someone with dementia were more likely to answer correctly. The results indicate confusion and poor levels of knowledge and the authors suggest any awareness campaigns must address a range of knowledge deficits.

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
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.

“Making the best of what we have”: The lived experiences of community psychiatric nurses, day centre managers and social workers supporting clients with dementia attending a generic day care service

Laird, E.A., McGurk, P., Reid, B. and Ryan, A.
International Journal of Older People Nursing.
Laird et al. (2017) explored the experiences and perspectives of community psychiatric nurses, day centre managers and social workers on supporting clients with and without dementia in a generic day care service.
Themes to emerge from the data are grouped under five key headings: easing the transition to day care, proactively managing supervision and complexity of need, sustaining the person and family carer, making the best of what we have and encountering a need for change. Participants were committed to an integrated care model with an emphasis on fostering relationships. In some locations the service is provided in a shared community space and participants felt this had a positive effect on community perceptions of ageing and dementia. Location and transport were found to impact on equitable provision of service. The study affirms the important contribution generic services can make but highlights the need for a flexible, responsive approach.

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice.

Dröes, R.M., Chattat, R., Diaz, A., Gove, D., Graff, M., Murphy, K., Verbeek, H., Vernooij-Dassen, M., Clare, L., Johannessen, A. and Roes, M.
Aging & Mental Health
In response to the recent proposed reformulation of the WHO definition of health by Huber et al.
(2011), and in consultation with members of the European working group of people with dementia, members of the INTERDEM Social Health Taskforce set out to operationalise the proposed three dimensions of social health for people with dementia. These are: the capacity to fulfil one’s potential and obligations; the ability to manage life with some degree of independence; participation in social activities. Droes et al. (2017) provide a consensus based operationalisation of Huber’s concept of social health for people with dementia, identify factors that influence the persons’ capacity within each dimension, interventions that can support social health for the person and make recommendations for research and practice.

The Nun Study and Alzheimer’s disease: Quality of vocation as a potential protective factor?

Keohane, K. and Balfe, M.
This paper uses data from the Nun Study; an ongoing longitudinal epidemiological study that began in 1986, in America. Over 900 nuns have agreed to undertake regular psychometric testing and to donate their brains post-mortem for autopsy.
Keohane and Balfe (2017) consider the data in terms of Max Weber’s concept of ‘beruf’ or calling. While acknowledging that other factors may also be at play, the authors posit that vocation may offer some protection against dementia. Some of the nuns who died had significant biological symptoms post mortem but had appeared to be functioning quite highly before death. Research has already established that education and occupation may offer some protection and the authors suggest that an intense vocation coupled with complex intellectual activities and the social support found in such a cohesive community may facilitate development of active brain reserve against dementia. They discuss the loss of vocation in modern society and the possibility that we are moving towards “a new wave of dementiagenic currents.”

Dichotomising dementia: is there another way?

McParland, P., Kelly, F. and Innes, A
Sociology of health & Illness
In this article Mc Parland et al. (2017) discuss the narratives of “tragedy” and “living well” with dementia. They suggest that these two discourses effectively sit in opposition to each other and do not reflect the complex reality of what it means to live with dementia.
Accepting that the move to a positive or living well discourse was a necessary response to the tragedy discourse, they argue there is the potential that those who do not meet our notion of what it means to live well with dementia risk even further disenfranchisement and that this tension between the two discourses has the potential to create division among people with dementia themselves. The authors suggest it is time to challenge these seemingly opposing discourses and create one that more accurately reflects and supports the multiple realities of dementia.

Respite in dementia: An evolutionary concept analysis

O’Shea, E., Timmons, S., O’Shea, E., Fox, S. and Irving, K.
Dementia: The International Journal for Research and Practice
In this article, O’Shea et al. (2017) focus on respite and how it is conceptualised. A concept analysis of the conceptual and empirical literature was adopted. A range of surrogate terms were identified, falling into two clusters, respite as a service and respite as an outcome.
The study identified two distinct, but inter-related categories previously associated with the concept of respite: client factors and services factors. The former includes five factors (dyadic relations, recognising and accepting need, carer psychological needs, restorative occupation and stigma) and the latter four factors (the service model and characteristics, care quality and staff expertise, meaningful occupation for the person with dementia, and communication and support]. For the carer, respite must be seen as mutually beneficial for both the carer and the person with dementia. The article reports that the evidence shows mixed outcomes in relation to respite. It outlines a conceptual model for respite as it relates to dementia. The article compares the parallels and dissimilarities with concept analysis of respite in the area of older people and intellectual disabilities. Respite as a term it is argued is limited because of its almost exclusive concentration on the experiences of the carer. An alternative term ‘restorative care’ is proposed instead to describe the process whereby both the carer and the person with dementia can mutually benefit from the experience.

Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics

Meiland, F., Innes, A., Mountain, G., Robinson, L., van der Roest, H., García-Casal, J.A., Gove, D., Thyrian, J.R., Evans, S., Dröes, R.M. and Kelly, F.
JMIR Rehabilitation and Assistive Technologies
Meiland et al. (2017) carried out a review of literature and consulted with experts on the effectiveness and cost effectiveness of assistive and health technology in dementia.
While benefits of these technologies were reported, the authors point to the uncontrolled nature of many studies, urging caution about the results. They found enthusiasm among people with dementia for using assistive technologies to support independence and also for taking part in the design process. People with dementia are able to use new technologies but often need support from carers or health professionals. Ethics featured heavily in the papers reviewed and often this related to the dilemma between autonomy and risk versus privacy and safety. Challenges identified included addressing individual needs and abilities, identifying technology that is most relevant to people with dementia and conducting robust research in the field. The authors detail a series of recommendations and conclude that further research is needed alongside a multi-disciplinary approach to development of a technology deployment strategy.

A systematic review of electronic assistive technology within supporting living environments for people with dementia

Daly Lynn, J., Rondón-Sulbarán, J., Quinn, E., Ryan, A., McCormack, B., and Martinet, S.
Dementia: The International Journal of Social Research and Practice.
This is a systematic review conducted by Daly Lynn et al. (2017) which aimed to provide an overview of assistive technologies in use in residential care settings to support people with dementia.
It also set out to provide an overview of the methodologies adopted to assess the impact of such technologies and the extent to which people with dementia were included in studies exploring these technologies. The paper outlines the search strategy, inclusion and exclusion criteria, and the studies selected. A total of 61 studies were included in the review, 23 of which focused on telecare technology interventions in long-term care settings, with a wide range of methodological approaches adopted in the studies. Studies on light therapy, robotic companions, technological solutions to support well-being and leisure, simulated presence therapy, and those relating to orientation and activities of daily living were included in the review. The challenges raised by the technologies are discussed including the varieties of technologies from which to choose as are issues of informed consent.

Views of Caregivers on the Ethics of Assistive Technology Used for Home Surveillance of People Living with Dementia

Mulvenna, M., Hutton, A., Coates, V., Martin, S., Todd, S., Bond, R. and Moorhead, A.
In this paper, Mulvenna et al. (2017) examine the ethics of using assistive technology such as video surveillance in the homes of people with dementia. The paper sets out the background context to the study and reviews related studies that have been carried out in relation to this topic.
The paper then describes what a video surveillance solution might look like. Using a living lab approach, the study engaged with 2 people with dementia and 22 family caregivers to elicit their views on the use of video surveillance and if these were consistent with the findings reported in the literature. The majority thought that video surveillance was a good or very good idea and the system easy or very easy to use. Ethical principles were evident in the responses of participants, with autonomy presented most frequently, as were some cautious perspectives. The paper concludes that the use of cameras in the home of a person living with dementia where family caregivers could monitor their relative with dementia was supported as useful, ethical and moral providing the right protocol is in place to gain consent, but that some ethical discomfort arises when professional caregivers are involved in caring within the home.

A Review of Contemporary Work on the Ethics of Ambient Assisted Living Technologies for People with Dementia

Novitzky, P., Smeaton, A.F., Chen, C., Irving, K., Jacquemard, T., O’Brolcha, F., O’Mathuna, D. and Gordijnet, B
Science and Engineering Ethics
This literature review by Notivzky et al. (2017) addresses the ethical issues involved in research and development, clinical experimentation and application of ambient assistive living (AAL) technologies for people with dementia and related stakeholders.
The paper discusses the terminology used and reports on the frequency with which the most ethically relevant terms occurred. The findings are presented relevant to each group of stakeholders. In addition to ethical issues relating to safety, security and privacy, the study highlights further ethical issues including the value of the goals of AAL technologies, the special vulnerability of people with dementia in their private homes, and the complex issue of informed consent from people with dementia.

Perception and communication of risk in decision making by persons with dementia

Stevenson, M., Savage, B. and Taylor, T.J.
Dementia: An International Journal of Social Research and Practice in Dementia
This paper by Stevenson, Savage and Taylor (2017) reports on one phase of a multi-stage study focusing on risk communication in dementia care.
The phase reported on here explores the perspectives of people with dementia in relation to ways in which they conceptualise risks, their experiences of risks and how these risks were communicated between these individuals and their families and healthcare providers. Interviews were conducted with 17 community dwelling people with mild to moderate dementia living in NI. A grounded theory approach was used to guide the analysis of interview data. Findings are reported under three thematic headings: defining risk; constructing risk; and risk communication in decision-making processes. In relation to the latter, active and passive models of decision-making were evident and illustrated in communications around driving, medication, social care and general every-day decisions. The paper concludes that taking account of what risk means to the individual and the language used and how it interconnects with emotions is important in communications about risk-taking with a person with dementia. Positive risk-taking is promoted and risk averse approaches avoided when the person with dementia is supported to consider and communicate all aspects of risk.

Nurses' experience of caring for people with intellectual disability and dementia.

Cleary, J. and Doody, O.
Journal of Clinical Nursing
Using a Husserlian phenomenological approach Cleary & Doody (2016) explored the lived experience of 20 nurses providing community and residential services to people with an intellectual disability and dementia.
Contrary to previous literature in this area, the authors found a good level of knowledge about dementia and a confidence in providing end of life care but participants reported concern about the level of knowledge among their colleagues. Participants were committed to a person centred approach but highlighted the impact of increased time needed to provide care and support. They also highlighted the complex and difficult nature of transitions across all settings and the impact of the behaviour of the person with dementia on their peers. The authors point to the need for an educated, dementia aware workforce.