Dementia Services Information and Development Centre

Launch of “An Irish National Survey of Dementia in Long Term Residential Care”

Only 11% of Nursing Homes Have Dedicated Dementia Care Units According to First National Survey

The DSIDC & Trinity Study Found Private Sector Provides Majority of Special Care Units But Receives Least Funding From the National Treatment and Purchase Fund

The first national survey to map demographic trends in the provision of specialist long-term care for people with dementia in Ireland was launched by Adjunct Professor in Medical Gerontology at Trinity College Dublin, Davis Coakley recently at a special event in the Trinity Long Room Hub. The study, carried out by the Dementia Services Information and Development Centre and Trinity researchers from the School of Social Work and Social Policy at Trinity College, found very low numbers of dementia-specific care units (SCUs) throughout the Republic of Ireland. The researchers identified large gaps in service provision, especially in Leinster, and excessive numbers of patients in individual housing units. They argued that the findings showed that ‘SCUs have evolved in an arbitrary, fragmented and uncoordinated manner’.

The report, entitled ‘An Irish National Survey of Dementia in Long-Term Residential Care’, showed that the private sector provides the majority of the high dependency care, but received the least funding. The research, which was carried out in late 2013, was led by Research Associate Professor Cahill (School of Social Work and Social Policy, Trinity and Director of the Dementia Services Information and Development Centre) and 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). According to researchers, the report underlines the need for a new funding model to further incentivise the private sector.

Commenting on how the Irish findings compare with international practice, lead author, Professor Cahill 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.”

The report launch attracted a large gathering of researchers, academics, healthcare practitioners and family carers and the panel of respondents, chaired by Professor in Social Policy and Ageing Virpi Timonen, included key stakeholders Gerry Martin (Chief Executive Officer at the Alzheimer Society of Ireland, ASI) Tadhg Daly (Nursing Homes Ireland) and Dr Chie Wei Fan (Consultant Geriatrician, Mater Hospital).
Reflecting on the significance of the report at the launch, Professor Coakley said: “The shadow of the workhouse still looms over care of the elderly in Ireland. This is an important report into the sector and we should proceed to action on it now.”

Specialist Care Units (SCUs) address specific needs of people with dementia and the needs of their families/health carers. 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. The researchers set out to address this gap and to identify the demographic and infrastructural trends in the sector. They surveyed a total of 602 nursing homes in Ireland (achieving a 78% response rate).  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 the 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.”


Need for Choice in Long-Term Care Provision


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.

Associate Professor Cahill said that the National Strategy (December 2014) recommends that  a wide range of long-term care options should be available and that these should be designed to comply with best practice architectural principles and staffed by competent and skilled personnel.  However she comments that “unless funding models change significantly to incentivise private providers, no such choice will be available in the future to those in pursuit of more person-centered psycho-social models of care.”
“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.

Event Presentations

 

 

 

 

 

 

 

 

 

 

Professor Virpi Timonen - Trinity College Dublin

 

 

 

 

 

 

 

Professor Suzanne Cahill - DSIDC and Trinity College Dublin

 

 

 

 

 

 

 

Professor Davis Coakley - Trinity College Dublin

 

 

 

 

 

Mr Gerry Martin - Alzheimer Society of Ireland

 

 

 

 

 

 

 

 

 

Mr Tadhg Daly - Nursing Homes Ireland

 

 

 

 

 

 

Dr Chie Wei Fan

 

 

 

 

 

 

Layperson’s Guide

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 here SCU booklet 

Headline Findings of the First National Survey of SCUs in Ireland:


Key Demographic and Infrastructural Data


·     Location:
       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:
      Great variability in waiting time for admission, many SCUs were unable to provide reliable data.
-     Waiting time was far longer in Leinster where there are significantly fewer SCUs.
·     Staff training:
      Specialist dementia training of staff varied by provider type.
-     More privately operated SCUs reported that all nursing staff and health care attendants had
      received specialist training
-     HSE operated facilities reported only one third of nursing staff and 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.
-     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:
     Responses provided positive affirmation of the person centred philosophy underpinning the vast     
     majority of 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 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.

 

A Copy of the report can be downloaded here