DUBLIN, January 29th 2015 – The first national survey to map demographic trends in the provision of specialist long-term care for people with dementia in Ireland has found low numbers of dementia-specific care units (SCUs) throughout the Republic of Ireland.
The study also showed:
- Most of the high level care required for the growing number of people now living with dementia in Ireland is provided by the private sector
- Significantly fewer SCUs in Leinster (and increased waiting times) compared with other areas
These findings are contained in a new report entitled ‘An Irish National Survey of Dementia in Long-Term Residential Care’, which was launched by Adjunct Professor in Medical Gerontology at Trinity College Dublin, Davis Coakley, at an event in the Trinity Long Room Hub today [Thursday, January 29th, 2015]. The report was published by the Dementia Services Information and Development Centre (DSIDC) and the School of Social Work and Social Policy at Trinity College.
Commenting on how the Irish findings compare with international practice, lead author, Research Associate Professor Cahill (School of Social Work and Social Policy, Trinity and Director of the Dementia Services Information and Development Centre), said: “Of some concern is the fact that only 11% of all the Irish facilities surveyed have dedicated dementia units and, despite an expected increase in demand for long-term dementia care arising as a result of population ageing, only a small minority of Irish nursing homes intend opening dementia units.”
There are currently 48,000 people living with dementia and 50,000 carers in Ireland. However, despite a significant increase in the number of people with dementia in Ireland, there is currently a lack of comprehensive information available to both the medical community and families about the state of dementia care nationally. This research, carried out in late 2013, set out to address this gap and to identify the demographic and infrastructural trends in the sector. The researchers surveyed a total of 602 nursing homes in Ireland. They found that only 54 nursing homes (11% of all those surveyed) provided dementia specific segregated care in small scale domestic units. This compares with up to 33% in other countries like the Netherlands and Norway where their respective governments have set targets to increase this type of long-term care.
The survey also identified that by far the main bulk of the specialist care (63%) was provided by the private sector. Significantly, the authors noted that the private sector receives considerably less funding for the care of older people from the National Treatment and Purchase Fund.
Commenting on the report, Tadhg Daly, (CEO, Nursing Homes Ireland) said: “This report is very timely and yet another ‘eye-opener’ for Government and policy stakeholders. We wholeheartedly welcome the research findings that the complex and high dependency needs of persons with dementia need to be realistically reflected in better resource allocation. The recommendation for a payment model that is commensurate with levels of care, staff training and skill mix, and type of non-pharmacological interventions is in keeping with Oireachtas Health Committee recommendation for evidence-based payments for nursing homes that incorporate real cost of care. This report highlights the willingness of our sector to meet the significant challenge of meeting the long-term care requirements of persons with dementia but the urgent necessity for appropriate policy and planning is outstanding.”
Headline Findings of the First National Survey of SCUs in Ireland:
Key Demographic and Infrastructural Data
Considerable diversity and inequities across the country regarding the location of specialist care units. Certain areas are well supplied, other areas have either limited or no provision.
– Sligo, Wicklow, Carlow, Kilkenny Westmeath and Offaly have no specialist provision.
– Privately operated units are more likely to be located in rural areas
– HSE and Voluntary operated units are generally found in towns or cities.
- Waiting times:
Huge variability was found in waiting time for admission and many specialist care units were unable to provide reliable data.
– Waiting time was far longer in Leinster where there are significantly fewer SCUs compared with other areas.
- Staff training:
Specialist dementia training of staff varied by provider type with a significantly larger proportion of privately operated SCUs reporting that all of their nursing staff and all health care attendants had received specialist training compared with HSE operated facilities where only one third of nursing staff and one third of health care attendants had been specially trained.
- Respite Care Provision in SCUs:
– Only 66 respite beds catering for the 30,000 Irish people now known to be living with dementia in the community were identified across the 54 units surveyed (6% of all beds). Findings show that the HSE and Voluntary sector were the main providers of respite beds.
– Consistent with earlier research undertaken by Nursing Homes Ireland and the National Dementia Strategy the average number of residents with dementia living in these units was 19, a figure way in excess of best practice norms.
Quality of Care Findings
- End of Life Policy:
Overall responses to this question provide positive affirmation of the person centred philosophy underpinning the vast majority of these specialist units. Majority of these SCUs provide end of life care often offering palliative care services to their residents. However about 13 % either often or always moved their residents dying with dementia out of these facilities at end of life.
- Admission criteria:
– Surprisingly the HSE operated units which responded to the survey were more likely to require that all new admissions of people with dementia be independently mobile.
– The HIQA requirement that all new admissions should have a full diagnosis of dementia made by a suitably qualified medical practitioner was not always complied with.
- Physical Environment:
Private providers are more likely to offer residents with dementia their own individual bedroom (67%) compared with HSE operated units where figure was only 12%.
- Meaningful activities:
All units reported they offered residents therapeutic activities but one in five (most of which were HSE operated) do not provide opportunities for domestic activities.
– Gardening was the most popular domestic activity but was not available in 13 units.
Data on Patient Demographics
- Total number of Residents with dementia in SCUs
A total of 1,034 representing 2% of all people with dementia in Ireland or 4.5% of all those with dementia in long stay care were living in the 54 units identified.
- Residents aged less than 65
There are about 4,000 people in Ireland with young onset dementia of whom about 600 probably live in long-stay residential care. The findings revealed that only 54 (9%) of these younger people with dementia in long stay care are resident in these specialist units and only one person with Down Syndrome-related Alzheimer’s disease.
The new National Dementia Strategy (December 2014) recommends that all older people with dementia should be afforded choice. Associate Professor Cahill said, “There should be a range of long-term care options designed to comply with best practice architectural principles and staffed by competent and skilled personnel. Unless funding models change significantly to incentivise private providers, no such choice will be available to those in pursuit of more person-centered psycho-social models of care.”
The report led by Associate Professor Suzanne Cahill was carried out by a research team which included Dr Caroline O’Nolan (School of Applied Social Science, UCD, formerly School of Social Work and Social Policy, Trinity College), Ms Dearbhla O’Caheny (The Dementia Services Information and Development Centre) and Dr Andrea Bobersky (former PhD student at the School of Social Work and Social Policy, Trinity College).
“This survey provides an important baseline for further Irish research on specialist care units (SCUs) for people with dementia. It highlights examples of innovative and creative person-centred practice as well as departures from best practice. The survey raises concerns regarding the current pattern of provision of SCUs and suggests the need for a more structured and planned approach to service provision,” said Dr Caroline O’Nolan.
Reflecting on the implications of the report at the launch, Professor Coakley said: “The findings of this report should be very helpful to those who wish to make Ireland a good place to grow old.”
According to the authors, the study presents a range of important insights for policy-makers, planners, service developers and the public and the baseline findings produced as a result of the survey represent a first stage in attempting to monitor quality of care; equity of access and implementation of best practice guidelines.
Implications for Policy
- Raise Awareness About Changes to Long-Term Residential Care Sector
“A new report has recently been published which contains new dementia prevalence rates for Ireland across the 26 counties (*). Combining this data with the findings in this report will set the framework for future policy and service development,” said Associate Professor Cahill. “Whilst recommendations as embedded in the National Dementia Strategy will help to augment community services for those living with dementia at home – an urgent need also exists for better resource allocation in the long-term residential care sector.” (*see Notes to Editor, below)
The survey responses also enabled the researchers to develop a resource manual for family caregivers wishing to place their relatives with dementia in a specialist care unit. This publication, entitled ‘Specialist Care Units for People with Dementia in Ireland’ is an easy to read, guide for family caregivers and health service professionals. The guide lists the contact details of 54 self-identified Specialist Care Units and can be downloaded for free from the DSIDC website here.
Suzanne Cahill, Tadhg Daly (Nursing Homes Ireland), Gerry Martin (The Alzheimer Society of Ireland) and Veronica O’Connell (Family Caregiver) are available for interview on request.
For media queries contact: Brenda McNally, Press Officer for the Faculty of Arts, Humanities and Social Sciences, Trinity College Dublin | firstname.lastname@example.org | + 353 1 8964337
Notes To Editor:
- About Research Associate Professor Suzanne Cahill
Suzanne Cahill is National Director of the Dementia Services Information and Development Centre and Associate Professor of Social Work and Social Policy at Trinity College Dublin. She was the lead author of the report title ‘Creating Excellence in Dementia Care: A Research Review for Ireland’s Dementia Strategy’. She is a member of the Gerontological Society of America, InterDem and sits on the Scientific Advisory Committee of the Alzheimer Society of Ireland.
- About Dr Caroline O’Nolan
Caroline is a post-doctoral researcher in the School of Applied Social Science in University College Dublin and is currently working on a European Commission Daphne III Project (Developing integrated responses to sexual violence: An interdisciplinary research project on the potential of restorative justice). She is also an Adjunct Assistant Professor in the School of Social Work and Social Policy in Trinity College Dublin. Caroline’s research interests span across a range of social policy areas including restorative justice; crime and criminal justice administration; immigration; ageing and elder care; and child protection.
Dr O’Nolan recently authored The Irish District Court: A Social Portrait (Cork University Press-2013)
The Dementia Services Information and Development Centre (DSIDC) is a National Centre for excellence in dementia and is committed to best practice in all aspects of dementia care. The centre offers three core professional services: Education and Training; Information and Consultancy; Research.
DSIDC was set up in 1998 in response to a growing demand for resources for practitioners working in the area of dementia and care of older people. We provide educational courses and training days to staff providing services to people with dementia in many different care settings around the country. The feedback from these courses assures us that we are meeting an important need in the public, private and voluntary sectors.
- About Professor Davis Coakley
Davis Coakley was a consultant in geriatric medicine at St James’s Hospital, Dublin (1979-2011), and professor of medical gerontology in Trinity College Dublin (1996-2011). He was dean of the Faculty of Health Sciences between 1993 and 1999. He is co-chairman of the Centre for Ageing Research and Development in Ireland, a body which promotes research on ageing across the island of Ireland. He was made an honorary fellow of Trinity College Dublin in 2005. He has written and edited a number of books on ageing.