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Latest News (15/06/2017)

An action-research pilot study to enhance long-term care planning for older people with an ID and their families in Ireland

IDS-TILDA has been granted funding by the Irish Research Council to conduct an action-research pilot study aimed at developing a future care planning process and tool for older adults with an intellectual disability living in the family home. The study will recruit approximately 12 families to take part in a planning process with the aim of agreeing future plans across a number of life domains, including future living and care/support arrangements.

This study aims to build on our previous research which found that families have major concerns about the future for their adult children with ID, yet many do not engage in future planning

You can view the report here

We are currently recruiting families who have a person with ID aged 40 years or older and who is living within the family home. We aim to recruit a small number of families based in both urban (Dublin and Navan) and rural (Galway and Midlands) settings to take part. To be eligible to take part, a minimum of the person with ID and one family carer is required.

Dr Damien Brennan (Assistant Professor, TCD School of Nursing & Midwifery) is the Principal Investigator of the study; and the research is being conducted by Dr Darren McCausland (Research Fellow, IDS-TILDA)

For further information contact:

Dr Damien Brennan ( or Tel. 01-8963114)

Dr Darren McCausland ( or Tel. 01-8962485)

    • Understanding Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability

      In Ireland there is a much reduced reliance on institutional care settings, and families are now the main providers of support for people with an intellectual disability (ID), and these people are now living into old age.  Over the past number of decades there has been radical changes to the ‘typical’ Irish family structure, including reduced family size with fewer siblings, fewer say at home home-makers; increased labour mobility; and changing economic contexts (particularly the reduced affordability of family homes on a single national average wage), all of which raise challenges to long term care provision within the home setting.

      Through interviews and focus groups with family carers of older people with ID, this study sought to explore and understand Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability.

      Some key findings include:

      • A fundamental love, devotion, and commitment between family carers and their family member with an ID underpins caregiving within the family home. However, such ‘love labour’ within the family setting is difficult to measure and cost, and families felt that such commitment can be used by the state and service providers to avoid care responsibilities for older people with an ID.
      • High quality and tailored ID daily services (e.g. day services, workshops, training centres) along with quality respite, were perceived by family carers as essential to maintaining family caregiving capacity.
      • The current direction and ‘one size fits all’ approach of contemporary ID policy was deemed by many families to overlook the needs of older people with an ID, including individuals with dementia, and/or severe and profound ID.
      • Future care plans were rarely discussed between family members and plans were aspirational in nature. This eventually led to acrimonious family relations and crisis care planning for their family members with an ID.
      • The majority of carers (particularly sibling carers) articulated that they represented the last remnant of family caregiving capacity within the family. As a result, they felt their family member with an ID may require some form of residential services in the future.
      You can view the new report here.
    • New DVD and Online Videos of Wave 2 Findings

      IDS-TILDA is very pleased to introduce our new series of videos portraying key themes from our Wave 2 findings, entitled “Scenes from Our Lives – Wave 2”. These new videos have been produced under the Health Research Board’s Knowledge Exchange and Dissemination Scheme (KEDS), and are acted by people with intellectual disabilities.
      Building on the success of our Wave 1 videos, we set out to make six short films that would portray some of the key themes from Wave 2 of the study in an inclusive and accessible way. The purpose of this project is to get the key messages from IDS-TILDA out to the people who matter – our participants and other people with intellectual disabilities all around the country, as well as their family and supporters.
      This is something often overlooked in academic research, but with the help of HRB funding we have been able to articulate our findings through these accessible videos. An essential part of this was the inclusion of people with intellectual disabilities at the heart of the process. The importance of inclusive research and dissemination is emerging internationally in the shape of ‘Patient and Public Involvement’ (PPI), and this is something which IDS-TILDA has placed at the heart of the study from the very start.
      The videos have been made with great support from six different services, from which each group portrayed findings under different themes.
      ‘Dementia’ – Prosper Fingal
      ‘Moving House, Family and Friends’ – Daughters of Charity
      ‘Being Overweight’ – Sunbeam House Services
      ‘Day Activity’ – Stewarts Care
      ‘Social Activity and Getting Around’ – SOS Kilkenny
      ‘Health Assessment’ – St. Christopher’s Services
      The videos were launched on DVD and online by the Minister with Responsibility for Disabilities, Finian McGrath TD, at a special event at the Science Gallery in Trinity College, on Monday 5th December.

      You can view the new videos here.
    • IDS-TILDA valuing carer’s involvement

      Family carer’s have contributed to the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing since its commencement in 2008. On this, Carer’s week, the team would like to take this opportunity of thanking all carer’s for their continued support and contribution to this unique and important study investigation the lives of people with ID as they grow older. Carer’s in the IDS-TILDA study provided invaluable information in establishing what their lives and those for whom they care for are like.
      Speaking on the findings of the IDS-TILDA study, Professor Mary McCarron, Chair in Ageing and Intellectual disability Trinity College commented “IDS TILDA study interviewed a number of family supporting their family member who was ageing 50% of families interviewed felt totally overwhelmed, 4 out of every 10 interviewed suffering huge financial strain with many having to make work adjustments or give up work to take care of their family member.  Unlike the general population the majority of carers 68% were sibling carers.  The overwhelming majority of those who were ‘strained’ were actually sibling carer’s, despite being younger.  ‘I am happy to take care of my sister. Just overwhelmed of having to take full responsibility on my own’. Quote from a sibling carer.”  Prof. McCarron spoke about this “Triple Decker Sandwich Generation” with many taking care of their own children, their parents who were ageing, and on top of this their ageing family member with an intellectual disability.
      The majority of people with ID in Ireland live at home and their contribution is key to sustaining this home environment as revealed by an additional study on Family Carer’s, funded by the National Disability Authority and supported by IDS-TILDA, released today.
    • Understanding Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability

      Family Care givers are the key to sustainable home environments for older people with an intellectual disability. As Carers’ Week continues, Trinity reveals the findings from a new study on family caregivers to those with intellectual disability. People with intellectual disability (ID) are now living longer than ever before – in many cases they are outliving their parents, who are often their primary care-giver.
      However there is a deficit of research exploring family caregiving capacity in Ireland, particularly within the ID sector. Now new research from Trinity College Dublin’s School of Nursing and Midwifery, funded by the National Disability Authority, aims to shed light on the subject and hopefully enable long-term and sustainable family environments for people with ID as they age.
      The study, ‘Understanding Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability’ builds on the DoH and HRB funded study IDS-TILDA, the intellectual disability supplement to Trinity’s longitudinal study on ageing in this country. Of particular interest to the researchers was to illuminate barriers and enablers for families with an older person with ID and to identify best practice for supporting those families.

      With regard to the sustainability of family caregiving, key findings were:
      • The current ‘one size fits all’ approach to contemporary ID policy was deemed by families to be incongruous with the needs of older adults with ID.
      • The ‘love labour and care’ provided by family caregivers is essential but very difficult to measure, cost and replace.
      • Sibling caregivers in particular felt physically, psychologically and intellectually unsupported in their role.
      • Daily ID services such as day services and training centres were deemed by families to play a crucial role in maintaining their caregiving capacity.
      • Many of the families’ had not discussed or agreed future care plans.
      • Many of the families felt their family member with an ID would require residential services in the future.
      Speaking on the findings, School of Nursing and Midwifery Assistant Professor Damien Brennan commented

      “Now more than ever, it is important for people with an Intellectual Disability and their families to consider their long term care needs as they age.  Furthermore, Irish social policy must anticipate and meet these needs so as to ensure that old age for people with an Intellectual Disability is a positive and life affirming time. Family carers are key to providing sustainable home environments for older people with an Intellectual Disability; they demonstrate outstanding love in their caring but feel very unsupported and undervalued in their role”

      A summary of the report findings ‘Understanding Family Strategies that Enable Long Term and Sustainable Home Environments for Older People with an Intellectual Disability'

  • Last updated 15 June 2017 by (Email).