“We don’t have the infrastructure to support them at home”: How health system inadequacies impact on long-term care admissions of people with dementia.

Donnelly, N.A., Humphries, N., Hickey, A. and Doyle, F.
Health Policy
This qualitative study examined the role of Irish healthcare system factors on the admission of people with dementia to long term care. Community care services were evidenced to be under resourced and inequitable.
Examples included a lack of continuity of care in the community and considerable differences in access to services based on geographical location. The constraint in community services creates a situation where in the absence of adequate support, even for a short term crisis, families are forced to consider admitting their loved one to hospital. A further complicating factor is that in the face of lengthy waiting lists for community services, health and social care professionals will sometimes advsie a family to admit the person with dementia to hospital as a way to speed up access to services. When someone is admitted to acute care, this is seen to accelerate admission to long term care with people with dementia reprorted to often deteriorate during their stay. It is also often at this point that health care professionals take the lead in decision making and control moves away from the family. Irish government policy advocates supporitng people to live well in their own homes for as long as possible but the authors suggest current indaequacies in the system, that were exacerbated by the economic crisis, have resulted in community services that fail to meet policy objectives.

Genio Dementia Programme: Evaluation End of Year 1

O’Shea, Murphy, E
Irish Centre for Social Gerontology

This report by O’Shea and Murphy (2014) examines the workings of the Genio Dementia Programme at the end of its first year. The report is based on information provided by Genio, visits to the project sites and meetings with key personnel, and a structured questionnaire completed by each site.

The report outlines key learning outcomes in relation to public awareness, diagnosis, community-based supports, and integrated provision. It considers issues around sustainability and reflects on the implications for public policy.

An Evaluation Report on the Dementia Support Worker Initiative of the 5 Steps to Living Well with Dementia in South Tipperary Project

CAHILL, S., PIERCE, M., Bobersky, A.
Living Well with Dementia

This report published by Trinity College Dublin and Genio Ltd describes an evaluation of a new model of respite developed and offered by 5 Steps to Living Well with Dementia in South Tipperary, one of the Genio Dementia Project sites.

The initiative focused on providing individualised supports to people with dementia and their family carers, which were delivered by Dementia Support Workers. The evaluation, which was carried out when the Dementia Support Worker Initiative was in its early stages, drew largely on qualitative interview with eight people with dementia and twelve family carers availing of the supports, and was supplemented by quantitative data to explore the experiences and impact of the initiative on people with dementia and their family carers. 

An Evaluation Report on Flexible Respite Options of the Living Well with Dementia Project in Stillorgan and Blackrock

CAHILL, S., PIERCE, M., Bobersky, A.
Dementia Project

This report published by Trinity College Dublin and Genio describes an evaluation of an initiative of the Living Well with Dementia Project in Stillorgan and Blackrock in Dublin, one of the Genio Dementia Project sites.

Following consultation with the community, the project developed community-based supports designed to meet the needs of both the people with dementia and their family carers. One of the supports was a community-based activity/exercise programme and this is the subject of this report, which evaluates the programme based on the experiences of people with dementia and their family carers attending the programme.  

Briefing Paper on Dementia Advisors

De Siún, A.

De Siún (2013) takes the reader through several countries, their national dementia strategies and the varying ways in which the dementia advisor role has taken shape in these countries, along with their key responsibilities and supporting structures.

It then moves to ROI and describes the situation with respect to dementia advisors in 2013, where advisors were found to take a mixed approach, that access to services differs significantly across regions and that they are more often dealing with families and carers than the person with dementia. Finally, the briefing paper reviews the research evidence on dementia advisors.

Responding to the challenges of service development to address dementia needs for people with an intellectual disability and caregivers

MCCARRON, M., MCCALLION, P., Reilly, E. and Mulryan, N.
Jessica Kingsley Publishers

This book chapter by McCarron et al (2014) is included in a book edited by Karen Watchman addressing the association between intellectual disability and dementia; the experiences of dementia in people with intellectual disabilities; and service planning. This book chapter pertains to the latter.

It acknowledges the challenges faced by traditional intellectual disability services and explains the approach adopted by one such service in ROI to supporting and accommodating people with an intellectual disability who develop dementia. It exemplifies the move to an in place progression model in traditional intellectual disability services, whereby services are adapted so that people with an intellectual disability can be supported and accommodated as they progress through dementia. 

Exploring Greater Inclusion of People with Dementia in Museums and Galleries in Ireland: Pilot Evaluation 2012

Age and Opportunity

The Azure Pilot Programme based in ROI was developed to involve people with dementia and their carers (formal and informal) in facilitated discussions about artwork.

This evaluation (Azure, 2012) of the programme set out to: (1) document the first Azure programme at the Butler Gallery from the perspectives of those involved; (2) assess what elements worked well and what ones did not; and (3) outline the kinds of issues that need to be considered in organizing a project of this kind with a view to informing the future development of the programme. The programme was found to have been a very positive experience for everyone involved. It evaluated and made recommendations around several different aspects of the programme including recruitment, choice of venue and artwork, staff training, set-up and social aspect, bookings and participant information, facilitated sessions, facilitation skills, pre-existing groups, and steering group. The evaluation report concluded that the programme had tremendous potential.

Briefing Paper on Dementia Diagnosis

Cahill and Pierce

This briefing paper by Cahill and Pierce (2014) was commissioned by Genio Ltd in advance of the publication In ROI of the Irish National Dementia Strategy.

It describes where and by whom people receive a diagnosis of dementia, provides information on common standardised instruments used in cognitive assessment, the diagnostic criteria recommended for use, the value of neuropsychological testing and current thinking about best practice on disclosure patterns. It gives an overview of approaches to dementia diagnosis in five countries, namely England, France, the Netherlands, Norway and Australia. The final part of the paper identifies key actions for consideration in ROI to support the assessment and timely diagnosis of dementia. 

Mapping the Dementia Gap

CAHILL, S., Pierce, M

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. 

A Comparison of People Seeking Help at Memory Clinics in Belfast and Dublin

Barrett, S., Savage, G.

Barrett and Savage (2012) examined socio-demographic and clinical differences in people diagnosed with Alzheimer disease (AD) and MCI attending two specialist memory clinics, one in Dublin and the other in Belfast, and where possible changes over time.

They also examined medications used by people diagnosed with AD and MCI in the memory clinics. The mean age of people receiving a diagnosis of AD in the Dublin clinic was 74, and was lower than the mean age of 78 recorded at the Belfast clinic. A greater proportion of women than men (3:1) received a probable diagnosis of AD in both memory clinics, but data from the Dublin clinic suggests that this gender difference may be narrowing. There were differences between the two memory clinics with respect to educational attainment with a higher proportion of people diagnosed with AD in the Belfast clinic with primary educational only, an indication perhaps that the Dublin clinic attracts people from higher social-economic groups. 


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