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Attitudes to and Knowledge of Dementia in Northern Ireland

Dowds, L., MCPARLAND, P., DEVINE, P., Gray, A.M.
ARK NI
2010

This report provides findings from a survey of the general public in Northern Ireland which explored attitudes to and knowledge of dementia.

The survey was carried out as part of the 2010 Northern Ireland Life and Times Survey (NILT) and the findings are reported under four headings: knowledge of dementia; perceptions of people with dementia; attitudes towards people with dementia; and capacity for independent living (as perceived by the public). The findings indicate that while there is a reasonable knowledge of dementia among the general public in NI, there are significant gaps in their knowledge. Stigmatising attitudes to people with dementia are common and there is little belief in the capacity of people with dementia to live independent lives. 

Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes

Quince, C.
Alzheimer’s Society (UK)
2013

This report documents the experiences of people with dementia living in care homes and the views of the public on care homes.

Three questionnaires were developed and the results used to inform the report: one for family members of people with dementia in care homes, one for staff in care homes in England, Wales and NI and one for people with dementia living in a care homes. The findings are supplemented with data from a 2012 YouGov poll on the attitudes of the general public to dementia and care homes. The report found that there were low expectations of the quality of life for those living with dementia in care homes across all groups surveyed, with a high percentage of adults expressing fear about potentially living in a care home in the future. It suggests more needs to be done to support people with dementia in the community and to promote choice and quality in care homes. While a high percentage of family carers rated the quality of care for the person with dementia as good, a lower percentage rated their quality of life as good. The overarching recommendation of the report is for government and the care sector to co-operate to improve public understanding of the potential for people with dementia to lead a good life in care homes, to challenge perceptions of poor practice, and promote care homes as appropriate places to care for people with dementia.

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.

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. 

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.

An Economic Perspective of Dementia Care in Ireland: Maximising Benefits and Maintaining Cost Efficiency

TRÉPEL, D.
Alzheimer Society of Ireland
2010

Trepel (2010) examines the international evidence on dementia in relation to prevention, care and cure and considers how the evidence can be used to inform decisions about spending on dementia that will maximise benefits to society and at the same time maximise optimal cost efficiency, and in par

ticular the implications for ROI. He concludes that investing in services and interventions to support carers is essential to achieving cost-effectiveness in dementia care. 

Financing Dementia: What money is available, what does dementia need and will the required resources be received?

TRÉPEL, D.
Alzheimer Society of Ireland
2012

In a later report, Trepel (2012) examines the different ways in which healthcare systems can be financed and resources distributed to those in need of healthcare.

He describes the unique public-private mix of financing health care in ROI, the two-tiered system of healthcare that has evolved, and the implications that this has for dementia care in ROI. Trepel (2010) highlights the absence of a clear budget line for dementia care. With increasing age dependency ratios meaning that fewer resources will be available in the future, he argues that the Irish government needs to make a financial commitment to dementia, guided by the principles of social solidarity, social sustainability and interdependency. To meet the needs of people with dementia and their carers and promote their quality of life, he argues that the “social contract” paid for during the productive years needs to be demonstrably upheld and contractual responsibility of private health insurers recognised.   

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. 

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.  

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. 

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