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Inequity of access to dementia services across Ireland revealed in dementia-specific community-based mapping project

The ‘Dementia Specific Services in the Community: Mapping Public and Voluntary Services’ mapping project, which has been completed by The Alzheimer Society of Ireland, the HSE and the National Dementia Office (NDO), has revealed gaps in the equity of access to services across Ireland. The full report can be accessed through the Understand Together website.

This mapping project has produced an excellent resource to access specific information about the wide-range of dementia supports and services across the country. This is the first time that this type of mapping project has been undertaken in Ireland.

The findings, which have been released today, show that there are gaps in service provision and inconsistency of availability of types of services by both county and Community Healthcare Organisation (CHO) area. 

The National Dementia Strategy (NDS), published in December 2014, outlines a commitment to critically review health and personal social services for people with dementia to identify gaps in existing provision and prioritise areas for action in accordance with resource availability.

The organisations involved in this project undertook this joint endeavour towards the end of 2016 to identify what dementia-specific services were available in communities across Ireland.

While this mapping project has certain limitations – it did not look at the generic services which people with dementia and their families might use or examine the quality of the identified services and supports – the findings offer a valuable snapshot and baseline study, revealing who is doing what, where and when in relation to the delivery of dementia-specific services and supports.

The findings show that there are significant gaps in service provision and inconsistency of availability of types of services by both county and CHO area. The mapping exercise and this report offers the NDO, HSE and other providers including the ASI a greater opportunity for the systematic development of new services in-line with identified local need. The findings will also assist Government in determining the locations which are most in need of developing dementia specific services.

The Alzheimer Society of Ireland CEO Pat McLoughlin said:

“We welcome the publication of this work which has been carried out by the HSE, the National Dementia Office and ourselves here in the ASI. This is great baseline information to have at our fingertips which will help us to paint a picture of the gaps in services for people with dementia across the country. There is no doubt that everyone should have equal access to dementia services in Ireland – no matter what part of the country they live in.

“I am particularly interested to see the gaps that have been identified in post-diagnosis supports for people with dementia. This is such an important area for people with dementia and findings have highlighted the lack of supports and interventions for people earlier in the dementia journey, particularly in relation to post-diagnostic supports such as Dementia Advisers, dementia counselling, dementia cognitive therapies, dementia information and signposting services/resources and support groups for people with dementia.

“In addition to this, this mapping report also highlighted the low number of dementia friendly activities in Ireland and this highlights the need for a greater community response to dementia. The HSE’s Understand Together Campaign, along with partners including The Alzheimer Society of Ireland and Genio, can use the findings from this project to target areas where dementia friendly communities are not in operation and mobilise local support where there has been little or no investment in dementia friendly activities or other services and supports within the community.

“Overall, this report is also a great tool for supporting evidence and planning for future delivery of services across Ireland. However, some glaring gaps have emerged in the report and more funding will be required to ensure that there is equity to access to services for people with dementia in Ireland. We will be looking forward to continuing building this evidence-based research through research and data gathering. It is also obvious that extra funding is required to ensure that there is equity of access to services for people with dementia across Ireland.”

Michael Fitzgerald Head of Operations  and Improvement  for Older People HSE  said:

“The HSE welcomes the publication of this report which was carried out by the ASI and the National Dementia Office.  The findings from the report are a vital tool for us to support evidence-based service planning and development. We now have a baseline to work from to appropriately address the needs of people with dementia and their families, guided by the principles of the National Dementia Strategy, in particular those of personhood and citizenship.

“While the project did not look at generic services or examine the quality of the identified services and supports, the findings nonetheless offer a valuable snapshot, telling us who is doing what, where and when in relation to the delivery of dementia-specific community services and supports.

“We know that not everyone requires a dementia specific service and that generic services may be a more appropriate response for many. In this regard, the HSE has included dementia as a key element of an on-going audit of generic day care services and respite services currently being undertaken.

“The National Dementia Office are working closely with the Community Health Organisations (CHO), utilising area specific data to help identify where priority should be given in the development of services and supports for people with dementia and family carers locally.

“We look forward to working with ASI and other stakeholders to implement the recommendations from the report. Work ongoing within the National Dementia Office, such as the Post-Diagnostic Support Pathway Project, will begin to address some of the recommendations of the report. I would like to sincerely thank those who provided information for the project and to the staff of both organisations who were involved in compiling this report.’’

ENDSFor more information contact The Alzheimer Society of Ireland Communications Manager Cormac Cahill on 086 044 1214 or cormac.cahill@alzheimer.ie

‘Dementia Specific Services in the Community: Mapping Public and Voluntary Services’:

In September 2016, the National Dementia Office (NDO), Health Service Executive (HSE) and the Alzheimer Society of Ireland (ASI) partnered on a project to map dementia-specific community-based services nationally. The project supports the implementation of the National Dementia Strategy (NDS) under a commitment by the HSE to critically review health and personal social services for people with dementia to (i) identify gaps in existing provision, and (ii) prioritise areas for action in accordance with resource availability.

Summary of Key Findings:

  • A total of 314 dementia-specific community-based services were identified across the Republic of Ireland, provided by approximately 32 providers.
  • The majority of these services (68%) were provided by the Alzheimer Society of Ireland2 (ASI), followed by the HSE (18%) and other providers amounting to 14%.
  • Services across the nine Community Health Organisation (CHO) areas ranged from 23 (CHO9) services to 44 (CHO1) services. The average number of services was 35.
  • The largest category (20%) of services were dementia-specific day centres (N=63).
  • There was a wide variance in the availability of dementia daycare ranging from a 6 day a week service to one centre opening once a month. However, the majority opened five days a week.
  • Three counties did not have any reported dementia-specific day centres – Wexford, Laois and Leitrim.
  • Services targeted at family carers made up just over one-quarter of services (N=81). These included dementia carer support groups (N=45) and family carer programmes (N=36).
  • There were 28 social clubs reported. There was a wide variance in the number of social clubs across CHO area; ranging from 7 in CHO9 to none in CHO2.
  • Services targeted specifically at people with dementia (N=25), particularly at the post-diagnostic stage, were not as readily available e.g. dementia advisers (N=9), case management (N=4), cognitive therapies (N=7), dementia-specific counselling services (N=1) and support groups for people with dementia (N=2). Other services such as Alzheimer Cafés and social clubs were also available to people with dementia.
  • Alzheimer Café’s accounted for 5% of dementia-specific services; with all regions, with the exception of CHO9, hosting at least one.
  • Overall, there was large variance across the country in terms of service availability. For example, counties Leitrim and Laois only had three reported services; Co. Kerry only had seven of the 40 recorded dementia-specific services for CHO area 4; with the remaining 33 located in Co. Cork. This has led to a concentration of some services in some areas, and a complete absence of similar services in others. For example, there were 14 dementia friendly activities reported in CHO 6 and none in CHO 2 and CHO 1. Similarly, with Dementia Advisers there were 13 counties where this service was on offer on a part-time basis with the remaining 50% of counties not having access at all to this type of service.
  • The majority of the 44 dementia friendly activities reported were located in Dublin (N=15). There were 18 counties which had no reported dementia friendly activity, including Meath, Wexford, Laois, Offaly, Westmeath, Longford, Waterford, Kerry, Clare, Tipperary, Galway, Mayo, Sligo, Leitrim, Roscommon, Donegal, Monaghan and Cavan.
  • In total, seven community-based dementia specific clinical roles were identified.
  • Four Assistive Technology (AT) Libraries3 were reported at the time of data collection. These were located in Carlow, Clonmel, Clonskeagh and Mallow.
  • Only four dementia-specific case managers or similar posts were reported.

The Alzheimer Society of Ireland:

The Alzheimer Society of Ireland (ASI) is the national leader in advocating for and providing dementia-specific supports and services and each year the organisation provides more than one million hours of community-based dementia-specific care throughout Ireland. A national non-profit organisation, the ASI is person centred, rights-based and grassroots led with the voice of the person with dementia and their carer at its core. The ASI also operates the Alzheimer National Helpline offering information and support to anyone affected by dementia at 1800 341 341 and provides a number of others supports and services to people with dementia and their carers across Ireland including 51 Day Care Centres and one Respite Care Centre. The ASI also provides Home Care, Family Carer Training, Dementia Advisers, Alzheimer Cafes and Social Clubs.

Dementia: Understand Together campaign:

Dementia: Understand Together is a public support, awareness and information campaign led by the HSE, working with the Alzheimer Society of Ireland and Genio, that aims to inspire people from all sections of society to stand together with the 500,000 Irish people whose families have been affected by dementia. For more information on dementia, and the services and supports available, Freephone 1800 341 341 or visit www.understandtogether.ie

About Dementia:

● The number of people with dementia in Ireland is expected to more than double over the next 20 years, from 55,000 today to 113,000 in 2036. ● Dementia is progressive. There is currently no cure. Dementia is not simply a health issue but a social issue that requires a community response. ● Each year over 4,000 people develop dementia. That’s at least 11 people every day and anyone can get dementia – even people in their 30s/40s/50s. ● The overall cost of dementia care in Ireland is just over €1.69 billion per annum; 48% of this is attributable to family care; 43% is accounted for by residential care; formal health and social care services contribute only 9% to the total cost. ● The Alzheimer Society of Ireland National Helpline is open six days a week Monday to Friday 10am–5pm and Saturday 10am–4pm on 1800 341 341.

Figures referenced to Cahill, S. & Pierce, M. (2013) The Prevalence of Dementia in Ireland

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