Search

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.

Healthy Ireland – A Framework for Improved Health and Wellbeing 2013-2025

Department of Health
2013

Healthy Ireland is ROI’s national framework for action to improve the health and wellbeing of the people of ROI, published in 2013. Its main focus is on prevention and keeping people healthier for longer.

Healthy Ireland’s goals are to:

  • Increase the proportion of people who are healthy at all stages of life

  • Reduce health inequalities

  • Protect the public from threats to health and wellbeing

  • Create an environment where every individual and sector of society can play their part in achieving a healthy Ireland

Healthy Ireland takes a whole-of-Government and whole-of-society approach to improving health and wellbeing and the quality of people’s lives. While there is no explicit mention of dementia in Healthy Ireland, one of its key goal is to decrease the prevalence of unhealthy behaviours that contribute to chronic disease, and to increase the degree to which diseases and conditions are either prevented, or detected early enough to allow for successful intervention.

With respect to dementia, whilst ageing is the strongest risk factor for dementia and genes can play a part, the likelihood of developing dementia is also influenced by a number of cardiovascular risk factors and factors related to lifestyle including physical exercise, smoking, alcohol consumption, diet and cognitive activity. There is strong evidence that a healthy lifestyle can help to reduce the risk of dementia. Under the National Dementia Strategy, public awareness and health promotion measures are to be implemented by the Health Service Executive to support the implementation of Healthy Ireland by highlighting the modifiable lifestyle and cardiovascular risk factors which can beneficially impact on risk and time of onset of dementia. 

Two surveys have been completed since the publication of the Healthy Ireland Framework and links to the reports on these surveys are included below.  Links to a number of other policy documents and reports are also included. While these may not be directly related to dementia, they have relevance in terms of wider approaches to the prevention of dementia.

  • Healthy Ireland Survey 2015 Summary of Findings can be accessed here.
  • Healthy Ireland Survey 2016 Summary of Findings can be accessed here.
  • Tobacco Free Ireland can be accessed here.
  • Tobacco Free Ireland Action Plan can be accessed here.
  • A Healthy Weight for Ireland: Obesity Policy and Action Plan 2016-2025 can be accessed here.
  • Get Ireland Active: the National Physical Activity Plan can be accessed here.

National Disability Strategy Implementation Plan 2013-2015

Department of Justice and Equality
2013

Disability policy in ROI remains largely as set out in the National Disability Strategy which was published in 2004. The Disability Act 2005 and the Citizens Information Act 2007, which are legislative parts of the strategy, have been passed but have not been fully implemented.

The National Housing Strategy for People with a Disability (2011), the Value for Money Review of Disability Services in Ireland (2012) and the allied Report of Disability Policy Review by the Expert Reference Group (2011) are among the key reports published in 2011 and 2012 that signalled new directions for disability policy and significant changes in how disability support services are to be delivered in ROI. The National Implementation Framework for the recommendations of the Value for Money and Policy Review of the Disability Services Programme provides a mechanism for the implementation of significant change in disability services as does the National Disability Strategy Implementation Plan published in 2013, which sets out the practical measures that will be taken to advance the National Disability Strategy over the period 2013 to 2015. The latter strategy aims to promote an inclusive Irish society where people with disabilities can reach their full potential and participate in the everyday life of the community. Four High Level Goals (Equal citizens, Independence and choice, Participation, Maximising potential) were agreed by the National Disability Strategy Implementation Group (NDSIG), with key actions under each goal and objective. While there is no explicit mention of dementia in the Implementation Plan, one of the high level goals of the plan is that people with disabilities are free from discrimination and treated as equal citizens by their fellow citizens and this applies equally to all people with a disability including those affected by dementia.

Aspects of the NDSIP that exemplify relevance to people with dementia include:

  • Publication and enactment of the Assisted Decision Making (Capacity) Bill to give full legal capacity to people with disabilities.

  • Provision of disability awareness training by public transport operators to their staff and management.

  • Improved accessibility of public buildings and facilities.

  • Support for the provision of advocacy services for persons with disabilities and mental health difficulties.

  • Support for new models of respite support.

  • Development of policy guidelines to improve access for people with disabilities in relation to public roads and pedestrian facilities.

  • Development of a protocol for strategic assessment of nature and extent of housing needs of persons with disabilities.

  • Encouragement of service providers to develop health promotion programmes for persons with disabilities.

  • Support for sports partnership, Age Friendly and Social Inclusion programmes to assist people with disabilities to engage in activities, including through requirement of funding for programmes such as Sports Capital Grants.

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.

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. 

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.

 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.

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.

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.

 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.

Ageing, cognitive disorders and professional practice

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

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

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

Diagnosis and disclosure of dementia – A comparative qualitative study of Irish and Swedish General Practitioners

MOORE, V., CAHILL, S.
Aging and Mental Health
2013

A cross-country study by Moore and Cahill (2013) explored the attitudes of a convenience sample of nine GPs in ROI and Sweden to dementia diagnosis and disclosure.

It found that GPs largely relied on patients or their families to bring memory problems to their attention, with some GPs expressing reluctance at broaching the subject with them. GPs in both countries reported avoiding using the word ‘dementia’ in conversations with their patients. GPs in ROI were less likely than their counterparts in Sweden to have received specialist training in dementia. There was a marked difference between GPs in ROI and Sweden with regard to their satisfaction with the quantity and quality of community care services. In both countries, GPs believed that societal misunderstandings of dementia are still widespread, so much so that dementia continues to be a stigmatised condition. 

Prevalence of frailty-related risk factors in older adults seen by community nurses

BALLARD, J., MOONEY, M., DEMPSEY, O.
Journal of Advanced Nursing
2013

This study by Ballard et al. (2013) describes the frequency of four frailty-related risk factors in a cohort of older adults visited by public health nurses in Dublin, ROI.  Suspected cognitive impairment was one of the frailty risk factors.

The other three were risk of malnutrition, falling, and dependence in ADL. The prevalence of suspected cognitive impairment, measured using the Hodkinson’s Abbreviated Mental Test, was found to be 16.4%, comparable to similar international studies. The study suggests that there is a need to implement a valid and standardised screening tool for use by public health nurses to help them identify older people with suspected cognitive impairment with a view to referral for further assessment for dementia or to rule out other causes negatively affecting memory such as vitamin B deficiency, thyroid disorders, depression, and delirium. 

The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature

MITCHELL, G., MCCOLLUM, P., MONAGHAN, C.
British Journal of Neuroscience Nursing
2013

The effects of disclosing the diagnosis to a person with dementia was the subject matter of a literature review conducted by Mitchell et al. (2013).

Only studies from the perspective of the persons with dementia were included and the majority (11/12) were framed within a naturalistic paradigm. The review findings show that feelings experienced by people recently given a diagnosis of dementia ranged from anxiety or fear to relief or the enablement of future planning. The perceived stigma surrounding a diagnosis of dementia was evident in the majority of studies in the review, as was the impact of losing the freedom to drive. 

Screening for Alzheimer’s disease in Downs Syndrome

O’CAOIMH, R., CLUNE, Y., MOLLEY, W.D.
Journal of Alzheimer’s Disease and Parkinsonism
2013

O’Caoimh, Clune and Molloy (2013) review instruments that are commonly used to screen for Alzheimer’s disease and explore the unique challenges of screening for the presence of Alzheimer’s disease in persons with Down syndrome.

The paper concludes that single, one-dimensional screening tools and opportunistic evaluations are insufficient for detecting dementia in persons with Down syndrome. The paper argues that a better approach is to use batteries of tests, incorporating informant questionnaires, direct neuropsychological testing, assessment of activities of daily living and behaviours, measured at baseline and reassessed at intervals. 

Which part of the Quick mild cognitive impairment screen (Qmci) discriminates between normal cognition, mild cognitive impairment and dementia?

O’CAOIMH, R., GAO, Y., GALLAGHER, P.F., EUSTACE, J., MCGLADE, C., MOLLOY, D. W.
Age and Ageing
2013

Differentiating MCI from normal cognition and dementia was the topic of an article by O’Caoimh et al. (2013) who tested the assessment tool, Qmci.

They were interested in comparing the sensitivity and specificity of the subtests of the Qmci to determine which were best in differentiating MCI from normal cognition and dementia. They were also keen to refine and shorten the instrument. 

A population-based study of dosing and persistence with anti-dementia medications

BREWER. L., BENNETT, K., MCGREEVY, C., WILLIAMS, D.
European Journal of Clinical Pharmacology
2013

Brewer et al. (2013) assessed the adequacy of dosing and persistence with AD medications (anti-cholinesterase inhibitors and Memantine) and predictors (age, gender and drug sub-type) of these variables in the ‘real world’, i.e. outside the clinical trial setting.

 Using prescription refill information from the HSE Primary Care Reimbursement Services pharmacy claims database in ROI, the study found a substantial increase in the rate of prescribing of AD drugs between 2007 and 2010. Donepezil and Memantine were the most frequently prescribed AD drugs with a significant proportion of patients initiated on these drugs prescribed the maximum dose. However, only two-thirds of patients maintained this dose for at least two consecutive months, suggesting that there may be room for improvement in optimising the prescribing of AD medications, and a need to investigate the reasons why these medications are stopped. 

Psychotropic Medications and the Transition into Care: A National Data Linkage Study

MAGUIRE, A., HUGHES, C., CARDWELL, C., DERMOT O’REILLY.
Journal of the American Geriatrics Society
2013

Maguire et al. (2013) followed a cohort of older people living in the community in NI as they moved into long-stay residential care.

It used the Enhanced Prescribing Database (EPD), a unique centralised database of all prescriptions dispensed in community pharmacies in NI, to determine the proportion of patients who moved into care between January 2009 and January 2010 who commenced psychotropic medication before entry and the change in psychotropic medication use during the transition into care and after entry. For a small proportion of residents in care homes, use of psychotropic medication was a continuation of a medication regime that had been started before entry. However, one in six individuals with no history of psychotropic drug use in the 6 months before entry had been exposed to at least one antipsychotic prescription within six months of entering care. As well as highlighting the need to focus on reducing psychotropic drugs in care homes, the authors argue that the international concern about the level of psychotropic medication use should be extended to include all older people and not just those with dementia, focus on all types of psychotropic medication and include those living in the community. 

Developing a structured education reminiscence-based programme for staff in long-stay care facilities in Ireland

COONEY, A., O'SHEA, E., CASEY, D., MURPHY, K., DEMPSEY, L., SMYTH, S., HUNTER, A., MURPHY, E., DEVANE, D., JORDAN, F.
Journal of Clinical Nursing
2013

Cooney et al. (2013) describe the development and piloting of a structured education reminiscence programme for staff in long stay care settings.

 The programme was structured around a four-phase model: problem definition, accumulation of building blocks for intervention design, intervention design and validation.  The authors acknowledge that taking such a comprehensive approach is time consuming and labour intensive but argue that the nature of the programme gave staff ownership and enabled them to effectively use reminiscence in daily practice, improving their knowledge and ability to meet the psychosocial needs of residents.

A cross-national cross-sectional survey of the attitudes and perceived competence of final-year medicine, nursing and pharmacy students in relation to end-of-life care in dementia

DE WITT JANSEN, B., WECKMANN, M., NGUYEN, C.M., PARSONS, C., HUGHES, C.M.
Palliative medicine
2013

De Witt Jansen et al. (2013) compared the attitudes to people with dementia of final year medical, nursing and pharmacy student groups in the US and NI, and also examined perceived levels of confidence and competence in providing end of life care.

They found that students across the three professions in both the US and NI held positive attitudes towards people with dementia but reported different levels of competence in end of life care that was largely linked to differences in disciplinary training   

Cause of death in Alzheimer's disease: a cohort study

TODD, S., BARR, S., A.P.
QJM: monthly journal of the As
2013

In this prospective study, Todd et al.

(2013) examined the cause of death recorded on death certificates in an cohort of patients with Alzheimer’s disease in NI and compared these findings with expected death rates from the population to determine the accuracy of death certificate completion for a cohort of people with AD. The study found that AD was recorded on almost two-thirds of death certificates of AD subjects who died during follow-up. It found significant excess mortality in the AD group when compared with the NI population and that AD and pneumonia were the most significant underlying causes of death in the AD group. To explain differences between findings in the AD group compared with a control group, the authors conjecture that cause of death documented may be affected by the physician’s knowledge of the patient or reflect the approach to management of patients with end-stage dementia. 

Engaging life in two Irish nursing home units for people with dementia: Quantitative comparisons before and after implementing household environments

MORGAN-BROWN, M., NEWTON, R., ORMEROD, M.
Aging & Mental Health
2013

Morgan-Brown and his colleagues have developed and used the Assessment Tool for Occupation and Social Engagement (ATOSE) to evaluate the sitting room experience in two nursing homes for people with dementia in ROI (Morgan-Brown et al 2011a), the levels of social and occ

upational engagement of staff (Morgan-Brown et al. 2011b) and to compare the social engagement and interactive occupation of residents before and after conversion to a household model environment (Morgan-Brown, Newton and Ormerod, 2013Morgan-Brown and Chard, 2014). In the traditionally designed nursing homes, high levels of non-active behaviour and very low levels of social engagement were the norm for people with dementia. Staff were frequently absent from the room and when present spent little time in social engagement or interactive occupation with residents. Conversion to the household model, which included a homemaker permanently allocated to the space, was linked to highly significant changes in the behaviour of residents in both nursing homes. The findings support the hypothesis that providing a household environment provides an opportunity to positively influence the behaviour of the residents with dementia.

 An exploration of occupation in nursing home residents with dementia. British Journal of Occupational Therapy (2011 a)

Research Article: Social and Occupational Engagement of Staff in Two Irish Nursing Homes for People with Dementia (2011 b)

 Comparing communal environments using the Assessment Tool for Occupation and Social Engagement: using interactive occupation and social engagement as outcome measures (2014)

Early-onset dementia: the impact on family caregivers

FLYNN, R., MULCAHY, H.
British Journal of Community Nursing
2013

Flynn and Mulcahy (2013) used a conceptual model of caregiver burden to examine the impact of early onset dementia on caregivers.

 The authors found that most participants had a negative experience of getting a diagnosis, and that there was a physical, social and emotional burden associated with care giving.  Caregivers particularly referred to the financial burden for those with early onset dementia who may be at the height of their working life.  They also reported the impact of changing relationships and of the lack of knowledge and resources to support them.  

Male care giving in dementia: A review and commentary

MCDONNELL, E., RYAN, A.
Dementia
2013

McDonnell and Ryan review the literature on men caring for a relative with dementia (2013) and explore the experience of sons caring for a parent with dementia (2014).

 In the review they highlight the strengths of men as caregivers and suggest that consideration must be given to addressing the specific needs of male caregivers.  The review specifically comments on male sons as caregivers and the second paper explores this role in a study with a purposeful sample of sons in rural areas of ROI.  In this study the authors highlight the significance of a strong parental bond in reasons for taking on a care giving role.  As in other studies, a ‘getting on with it’ approach is evidenced while there is also evidence that many do not feel adequately supported. This study suggests that greater research is required into the role of sons as carers and the types of supports that would work best for this carer group.

‘Sustaining Place’ – a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds

DALY, L., MCCARRON, M., HIGGINS, A., MCCALLION, P.
Journal of Clinical Nursing.
2013

This study by Daly et al. (2013) took a grounded theory approach to developing a theory that would explain the social processes informal carers used to manage changing social interactions in their worlds.

Interviews were held with informal carers and participants from the health, social care and disability sectors working with people with dementia and their carers. The resulting theory of ‘Sustaining Place’ suggests that “the life-worlds of the person with dementia and informal carer are affected by spatial and inter-relational alterations, interrupting ways of being in and relating to the social world and those encountered in it.”  

Dementia 2013: The Hidden Voice of Loneliness

Kane, M., Cook, L
Alzheimer’s Society (UK)
2013

The 2013 Dementia report produced by the Alzheimer’s Society (UK) focused on people with dementia living alone and the impact of loneliness on quality of life. A questionnaire was used to gather the views of over 500 people living with dementia, although only 1% resided in NI.

A small number of interviews and two focus groups were conducted to explore the experiences of people with dementia who lived alone in more detail. The report references existing research, publicly available statistics and current work. A YouGov poll of 2,287 UK adults provided information on perceptions of dementia. Dementia 2013 suggests there has been some improvement in quality of life for people living with dementia since the 2012 report but that progress is slow. Key findings were: lack of diagnosis is an ongoing issue; there has been a marked reduction in inappropriate prescribing of antipsychotic medication; 17% of those surveyed said they are not living well with dementia, the same figure as 2012; a third of people with dementia said losing friends accompanied a diagnosis; a high percentage of people with dementia are lonely. In line with these findings the report highlights some general priorities across the UK and then focuses on each region.  The priorities for NI are to:

  • Improve health and care for people with dementia, drawing attention to Transforming Your Care, a review of health and social care in NI, and the consultation Who Cares? on the future of adult care and support in NI.

  • Make choice and control a reality for people with dementia, highlighting the need for NI to introduce formal mental capacity legislation.

  • Improve quality of life for people with dementia by reducing loneliness.

Clinicians’ Roundtable on the National Dementia Strategy ReportClinicians’ Roundtable on the National Dementia Strategy Report

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The second Alzheimer Society of Ireland publication is a report summarising a roundtable discussion involving health care professionals from the four areas of Old Age Psychiatry, Geriatric Medicine, Neurology and Psychology.

Facilitated by the Alzheimer Society of Ireland, the roundtable discussion brought together participants to share their expertise and discuss core clinical elements of the upcoming Irish National Dementia Strategy. The discussion centred on three key themes: Clinical Leadership and Developing a Dementia Register; People with Younger Onset Dementia; and Early Diagnosis and Memory Clinics/Services. A set of further actions needed to move the issues discussed forward is also included. 

Multidisciplinary Clinicians Roundtable on the National Dementia Strategy

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The third Alzheimer Society of Ireland publication is a report summarising a roundtable discussion involving healthcare professionals from multidisciplinary backgrounds including occupational therapy, social work, physiotherapy, speech and language therapy and nursing.

The themes used to structure the roundtable discussion were grounded in each of the five disciplinary areas: non-pharmacological interventions and behaviours that challenge (occupational therapy); improving Communication (speech and language therapy); physical activity for health and wellbeing (physiotherapy); A Social Work Perspective (social work); and the registered nurse’s contribution to person centred care (nursing).  As with the previous roundtable discussion, the report concludes with a set of suggestions as to how multidisciplinary clinicians can influence the development of the Irish National Dementia Strategy.  

Living With Dementia’: Implications for the National Dementia Strategy: Summary of Roundtable Discussions Submitted to the National Dementia Strategy Working Group

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The fourth Alzheimer Society of Ireland publication reports on two roundtable discussions organised by the Alzheimer Society of Ireland, which provided an opportunity for the National Dementia Strategy Working Group and Department of Health officials to meet with people with dementia and carers a

nd get their input on priority areas earmarked for inclusion in the strategy. The roundtables were structured around three themes: the role of the GP; community services; and dementia awareness and education. The report summarises the discussions points and key messages under each heading.