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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.

Improving Dementia Services in Northern Ireland: A Regional Strategy

Dept. of Health, Social Services and Public Safety
2011

The Bamford Action Plan 2009-2011 (DHSSPS, 2009) included a commitment by government to develop a regional dementia services strategy.

The Bamford Action Plan 2009-2011 (DHSSPS, 2009) included a commitment by government to develop a regional dementia services strategy.  A consultation process was carried out in 2010 to inform the development of the strategy.  This included consultation with a wide group of stakeholders and a targeted consultation for people living with dementia and their carers.  The strategy was formally launched in 2011 and aims to:

  • Promote a greater understanding of how dementia impacts on the lives of individuals, and how people can be supported to live well, with dignity and as valued members of our society.

  • Raise public awareness of dementia and how people can take some measures to reduce the risk of developing dementia or potentially delay its onset.

  • Encourage sharing of information on dementia to allow individuals, families and carers to make informed decisions.

  • Maximise independence and enhance daily living.

  • Respond to the voice of people with dementia and their carers, and promote access to earlier diagnosis and multidisciplinary assessment and support through further development of health and social care commissioning, thus placing the person with dementia, their families and carers at the centre of the care planning process.

  • Promote partnership working that recognises the pivotal role of carers and integrates the activity and skills of those who work in the statutory, community, voluntary and independent sectors.

The values underpinning the strategy are identified as dignity and respect; autonomy; justice and equality; safe, effective person-centred care; care for carers; and skills for staff.  A series of actions linked to one or more of these values were proposed.  These were reducing the risk or delaying the onset of dementia, raising awareness, promoting early assessment and diagnosis, supporting people with dementia, supporting carers, legislation and research.  The Department of Health, Social Services and Public Safety anticipated that the key actions required to improve services would be likely to cost an additional £6-8m per year. With additional support from The Atlantic Philanthropies, in September 2014 £11 million was allocated within the Delivering Social Change Initiative, targeting Raising Awareness; Information and Support for people living with dementia; Training and Development for those in the caring professions, both formally and informally; and Respite, Short Breaks & Support for Carers.   

Transforming Your Care: A Review of Health and Social Care in Northern Ireland

Dept. of Health, Social Services and Public Safety
2011

In December 2011 following an extensive consultation process the Minister for Health, Social Services and Public Safety published a report on the review of health and social care services.  This included a new model of care for NI based on 12 key principles:

  • Placing the individual at the centre of the model by promoting a better outcome for the service user, carer, and their family

  • Using outcomes and quality evidence to shape services

  • Providing the right care in the right place at the right time

  • Population-based planning of services

  • A focus on prevention and tackling inequalities

  • Integrated care – working together

  • Promoting independence and personalisation of care

  • Safeguarding the most vulnerable

  • Ensuring sustainability of service provision

  • Realising value for money

  • Maximising the use of technology

  • Incentivising innovation at a local level

Work continued after the report was published to develop implementation plans, including a further consultation process that resulted in the publication of: The Vision to Action Consultation Report.

The final strategic implementation plan was published in October 2013.

National Housing Strategy for People with a Disability 2011-2016

Department of Environment, Community and Local Government
2011

The National Housing Strategy for People with a Disability 2011-2016 sets out nine strategic aims including “to promote and mainstream equality of access for people with a disability to the full range of housing options suited to individual and household need” and “to support people with a disabi

lity to live independently in their own houses and communities”. The latter is in keeping with a key objective of the Irish National Dementia Strategy, which states that “people with dementia should be facilitated to remain living in their own homes and to maintain existing roles and relationships for as long as possible” (2014: 24). The National Housing Strategy for People with a Disability supports the Programme for Government commitment to promote and support universal design, particularly to ensure accessible housing. It states that ’technology can assist people with dementia, in association with safe and well-designed living spaces, to live as independently as possible’ (2014: 95). 

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.

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.    

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. 

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.  

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.

Anxiety and behavioural disturbances as markers of prodromal Alzheimer’s disease in patients with mild cognitive impairment

GALLAGHER, D., COEN, R., KILROY, D., BELINSKI, K., BRUCE, I., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
International journal of geriatric psychiatry
2011

In another article concerned with predicting conversion of MCI to Alzheimer’s disease, Gallagher et al. (2011) followed 169 patients with MCI over 27 months, 69 (43%) of whom converted to Alzheimer’s disease.

Neuropsychiatric symptoms were assessed with the Behavioural Pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. Survival analysis revealed that patients with MCI who had symptoms of anticipated anxiety and purposeless activity were approximately twice as likely to have earlier conversion to Alzheimer’s disease than patients with MCI who did not have these symptoms. This finding was independent of age, gender and education. However, since this finding was not independent of cognitive status at baseline, it may be, as the authors conclude, that the neuropsychiatric symptoms of anticipated anxiety and purposeless activity are markers of severity of disease rather than independent predictors of disease progression.    

Orientation to time as a guide to the presence and severity of cognitive impairment in older hospital patients

O’KEEFE, E., MUKHTAR, O., O’KEEFE, S.T.
Neurosurgery and Psychiatry
2011

Given the poor recognition of dementia and delirium in acute hospital setting and that disorientation to time is a very common feature of dementia and delirium, O’Keefe, Mukhtar and O’Keefe (2011) examined temporal orientation and its usefulness as a guide to the presence of deme

ntia or delirium among older in-patients and out-patents of an acute hospital in ROI. Of the 262 patients assessed on the same day by two different doctors, almost one-quarter were found to have dementia or delirium. The authors conclude that temporal orientation, properly recorded and interpreted, may provide a useful screening test for dementia or delirium in older hospital patients. 

Everyday episodic memory in amnestic mild cognitive impairment: a preliminary investigation

IRISH, M., LAWLOR, B.A., COEN, R.F., O’MARA, S.M.
BMC Neuroscience
2011

In their study, Irish et al.

(2011) aimed to characterise the nature of the memory impairment in MCI (using experimental tasks probing multiple domains of episodic memory function, including associative, spatial and everyday memory tasks that are analogues of real-world scenarios and are commonly encountered by individuals in their daily lives) and to obtain preliminary data regarding which of these tasks, if any, could potentially serve as an aid to identifying individuals with MCI in the prodromal stages of AD. Longitudinal follow-up data suggested that delayed associative memory performance at baseline may have some predictive utility for subsequent conversion to probable AD. This suggests that a simple Face-Name pairs test may have the potential to be a useful neuropsychological task for identifying individuals in the prodromal stage of AD. 

Effectiveness of a structured education reminiscence-based programme for staff on the quality of life of residents with dementia in long-stay units: a study protocol for a cluster randomised trial

O'SHEA, E., DEVANE, D., MURPHY, K., COONEY, A., CASEY, D., JORDAN, F., HUNTER, A., MURPHY, E.
Trials
2011

O’Shea et al. (2011) outline the study protocol for the trial referred to above. This study aimed to address the scarcity of trials on reminiscence as an intervention for people with dementia and the methodological issues associated with existing evidence.

 The protocol outlines a two-group, single blind cluster randomised trial conducted in long stay care settings.  The primary outcome is quality of life for residents, with secondary outcomes of agitation levels and depression in residents, and staff care burden. 

Efficacy of a cognitive stimulation therapy programme for people with dementia

COEN, R. F., FLYNN, B., RIGNEY, E., O'CONNOR, E., FITZGERALD, L., MURRAY, C., DUNLEAVY, C., MCDONALD, M., DELANEY, D., MERRIMAN, N., EDGEWORTH, J.
Irish Journal of Psychological Medicine
2011

This study by Coen et al. (2011) aimed to replicate previous research by Spector et al.

(2003) which found that Cognitive Stimulation Therapy (CST) produced improvements in cognition and quality of life for people with dementia that compared favourably with trials of cholinesterase inhibitors. While this study used a smaller sample and a control group engaged in routine activities, findings reflected those of Spector et al. that CST has beneficial effects for people with dementia, evidenced by improved MMSE AND QoL-AD scores that fell just short of statistical significance. The authors acknowledge the limitations of the small sample size and also that the changes in MMSE and QoL-AD were not reflected in the ADAScog. 

Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

BARBER, J., MURPHY, K.
International journal of palliative nursing
2011

In a literature review examining specialist palliative care for people with dementia Barber and Murphy (2011) reported that there is very little information available about end-of-life care in advanced dementia from the viewpoint of the SPC nurse.

The review suggests that expertise in both dementia care and palliative care needs to be combined and that further research is required to establish guidelines to assist with specialist training of staff.

The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia (2011)

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K.
Journal of Applied Research in Intellectual Disabilities
2011

This paper by McCarron et al. (2011) identifies seven inter-related themes thought to influence the role and timing of palliative care for people with an intellectual disability who have dementia. 

 

An exploration of occupation in nursing home residents with dementia. British Journal of Occupational Therapy

MORGAN-BROWN, M., ORMEROD, M., NEWTON, R., MANLEY, D.
British Journal of Occupational Therapy
2011

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, 2013; Morgan-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.

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

Engaging life in two Irish nursing home units for people with dementia: Quantitative comparisons before and after implementing household environments (2013)

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

Research Article: Social and Occupational Engagement of Staff in Two Irish Nursing Homes for People with Dementia.

MORGAN-BROWN, M., ORMEROD, M., NEWTON, R., MANLEY, D., FITZPATRICK, M.
Irish Journal of Occupational Therapy
2011

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)

Engaging life in two Irish nursing home units for people with dementia: Quantitative comparisons before and after implementing household environments (2013)

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

Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment

GALLAGHER, D., NI MHAOLAIN, A., CROSBY, L., RYAN, D., LACEY, L., COEN, R.F., WALSH, C., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
American Journal of Alzheimer's Disease and Other Dementias
2011

One hundred participants with mostly mild to moderate dementia and their caregivers took part in this study by Gallagher et al (2011a), the objectives of which were to determine the impact of patient dependence on caregiver burden and to determine its value as a predictor of care

giver burden. The authors report functional decline and patient dependence as most predictive of caregiver burden in the earlier stages of dementia while neuropsychiatric or behavioural symptoms were most predictive as dementia progressed.  The authors also comment on the usefulness and easy administration of the dependence scale.

Determinants of the desire to institutionalize in Alzheimer's caregivers(2011b)

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers(2011c)

Determinants of the desire to institutionalize in Alzheimer's caregivers

GALLAGHER, D., NI MHAOLAIN, A., CROSBY, L., RYAN, D., LACEY, L., COEN, R.F., WALSH, C., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
American Journal of Alzheimer's Disease and Other Dementias
2011

In a second paper from the same study Gallagher et al. (2011b) explored determinants of the desire to institutionalise (DI) among those caring for someone with Alzheimer’s disease.

 They asked whether potentially modifiable caregivers attributes were linked to DI and found that the most significant of these were caregiver burden and depression.  They also found an association between low caregiver self-efficacy and DI, and that caregivers with an emotion focused coping style were less likely to report DI.  The authors conclude that a multifactoral approach should be taken to reduce symptoms of burden and depression among caregivers. 

Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment (2011a)

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers(2011c)

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers

GALLAGHER, D., NI MHAOLAIN, A., CROSBY, L., RYAN, D., LACEY, L., COEN, R., F., WALSH, C., COAKLEY, D., WALSH, J., B., CUNNINGHAM, C., LAWLOR, B., A.
Aging & Mental Health
2011

In a study of eighty-four patient/caregiver dyads with mainly mild to moderate Alzheimer’s disease, Gallagher et al. (2011c) examined the relationship between self-efficacy for dementia management and symptoms of burden and depression among caregivers.

 They found that self-efficacy for symptom management of those with mild to moderate dementia directly impacts on the psychological health of caregivers, while among those with moderate to severe dementia, self-efficacy was more likely to mediate the relationship between the two.  They also found that self-efficacy may act as a buffer against the impact of behavioural symptoms on caregiver depression and burden.

Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment (2011a)

Determinants of the desire to institutionalize in Alzheimer's caregivers(2011b)

Creating Excellence in Dementia Care: A Research Review for Ireland’s National Dementia Strategy

CAHILL, S., O’Shea, E., PIERCE, M.
ICSG, Living with Dementia
2011

An extensive research review was undertaken by Cahill, O’Shea and Pierce (2011a), which provided updated estimates of the number of people with dementia in ROI in 2006 and projections of future numbers in 2041.

It estimated the social and economic costs of dementia to be €1.69bn per annum, a large proportion of those costs falling on informal caregivers. It reviewed the current and future availability of services for people with dementia, looked at what other countries are doing and what lessons can be learned from them. The findings of this research review were distilled into a shorter report aimed at the general public (Cahill, O’Shea and Pierce, 2011b). 

Prevalence and Projections of Dementia in Ireland

PIERCE, M., CAHILL, S., O’Shea, E.
Genio
2011

Providing estimates of dementia prevalence and projects was a key objective of the research review of dementia in ROI (Cahill et al., 2011a). However, the estimates reported in the review were based on the 2006 Census of Population.

Hence, a new Census of Population was conducted in 2011 and the 2006 estimates were updated in a new report for ROI. Applying the EuroCoDe dementia prevalence rates, it estimated that there were almost 48,000 people with dementia in 2011 and based on the most recent population projections, there could be as many as 90,000 people with dementia in ROI by 2031. Unlike the prevalence estimates for NI, this report provides an estimate of the number of women and men with dementia in ROI and points to the need for a gendered analysis to be taken to dementia.  

Getting Personal? Making Personal Budgets Work

Lakey, L., Saunders, T.
Alzheimer’s Society (UK)
2011

This report from the Alzheimer’s Society (UK) focuses on the use of personal budgets to meet the government’s personalisation agenda.

It suggests personal budgets offer many benefits for people with dementia and carers but that they are not suitable for everyone, so that other options must be available. Considerable burden was associated with accessing and using direct payments, and attitudes and understandings of health and social care professionals were identified as a barrier. There is a limited market range of services available and insufficient funding was highlighted. Criteria for eligibility were found to be problematic with many people not becoming eligible until a situation reached crisis point.

The report recommends full involvement of people with dementia and their carers in the personal budgets agenda, that personal budgets must not be seen as a cure-all for the social care system, that the market should be fully developed to deliver a range of different types of dementia services, that the personal budgets system should be adapted to meet the particular needs of people with dementia and their carers, that timely and appropriate information for people with dementia and their carers must be provided as well as awareness raising and training for health and social care professionals, and that the system must ensure an improved evidence base on dementia, including pilot sites to evaluate effective models of provision and accurate data on current use of personal budgets.

The Dementia Tax

Alzheimer’s Society
Alzheimer’s Society (UK)
2011

This report was produced by the Alzheimer’s Society (UK) to inform the debate on the funding of care and support for people with dementia.

The report, which follows the Society’s first Dementia Tax report (2008), suggests that people with dementia face the highest costs of care of any group and have to pay the most towards their care to the extent that the authors consider this a ‘Dementia Tax.’ Almost 4,000 people either living with dementia (411) or caring for someone with dementia were surveyed (1% of this population resided in NI). The report primarily focuses on England but has influenced policy development in Wales and NI. Key indicators of a better funding and charging system of care are suggested: people with dementia living at home for longer with better social contact; less people going into hospital and shorter hospital stays; more choice in relation to care at home and in formal care environments; the provision of specialist dementia care in care homes. The report also calls on the government to ensure an open public debate is held on the Dilnot Report (2011), with greater clarity and scrutiny of this report, recognition of the contribution of families to providing care, changes to care regulation, and creating better systems to reward and retain care staff. 

The £20 Billion Question - an inquiry into improving lives through cost effective dementia services

Sharp, S., Saunders, T., O’Brien, N.
All Party Parliamentary Group
2011

This report commissioned by the Alzheimer’s Society (UK) begins by setting the scene for provision of services in a challenging financial climate, making reference to the reduction in NI’s central funding and the likely impact on community care.

The report makes nine recommendations highlighting the need for: better collaboration and integration across dementia care and support systems; sharing expertise between different sectors; early intervention; improved co-ordination, increased use of key workers; better access to training; an increase in rates of diagnosis; better support for carers; sharing of best practice.

Mapping the Dementia Gap

CAHILL, S., Pierce, M
Genio
2011

Mapping the dementia gap produced by Tesco, Alzheimer's Society (UK) and Alzheimer Scotland puts figures on the gap between the number of people estimated to be living with dementia (both diagnosed and undiagnosed) across the UK, including NI, and the number that have received a diagnosis of deme

ntia based on the QoF dementia register. A fact sheet outlining dementia diagnosis rates specifically for NI in 2014 is available from the Alzheimer’s Society (UK) website. Equivalent figures are not available for ROI.