A Study of Family Carers of Older People with Intellectual Disability in Ireland and the Social Policy Context of their Caregiving

Abstract

Background: Older people with intellectual disability and the family carers of older people with intellectual disability have been identified by the World Health Organization (2000) as two joint vulnerable groups as they deal with the effects of the ageing process while also fulfilling a mutual caregiving role. Little prior research has focussed family carers of older adults with intellectual disability and there is a dearth of longitudinal data. Informal or family caregiving forms the bedrock of social care provision in many societies and family care takes place within the context of prevailing social policy. Social policy organises and ascribes value to such care and the supports made available to care; these reflect the implicit objectives of a State's care policies and have significant consequences to those providing care. Aims: This study had three key aims; 1. To explore how 'care' has been conceptualised and theorised and to review the extant research about the impacts of caregiving on caregivers. 2. To examine social policy responses to care and to critically analyse Irish social policy as it is expounded in the Carer's Strategy (2012). 3. To answer the research question: what is the health and well-being status of the family caregivers of adults with an intellectual disability, how has it changed over time and what factors impact on the health and wellbeing of the caregiver? Methods: The exploration of the conceptualisation and theorising of care was achieved through a narrative literature review. The critical analysis of Ireland's social policy response to care was conducted using Bacchi's "What's The Problem Represented To Be" framework. The study used data from Waves 1, 2 and 3 of the Intellectual Disability Supplement to The Longitudinal Study on Ageing, Carer's Study to identify the health and wellbeing status of the participating caregivers. A subset of carers had participated in both Wave 1 and Wave 3 of the IDS-TILDA Carer's Study thereby providing longitudinal data which was subject to a separate and extra analysis. The study utilised a mixed methods approach generating both quantitative and qualitative data. The study questionnaire is largely quantitative in design allowing for statistical analysis, however the strategic inclusion of text boxes allows carers to expand on their answers and provide contextual elaboration. Results As a group, the carers who participated in both Wave 1 and Wave 3 of the IDS-TILDA Carer's Study reported a good quality of life, good general health and most carers in both waves compared their own health favourably with the health of others of the same age although the degree of positivity decreased between the two waves. Many of the carers, at each point in time, were enjoying good health and a good quality of life. However, it is also evident that a small number of carers are living a difficult and increasingly difficult life and are severely burdened by their care responsibilities. Findings indicate the imperative for future research focussing specifically on siblings of older adults with intellectual disability. Sibling carers are a specific and increasing category of carers and it is important to understand their experiences in order to support them with their care responsibilities enhancing both their lives and the lives of those for whom the care. With the exception of young carers, the Irish Carer's Strategy (2012) does not differentiate between carers and thus is directed at a generic caregiver. Much of its focus is not inclusive of older carers of people with intellectual disability who experience a number of unique challenges including the longevity of the caregiving role and issues relating to mutual ageing (Ryan et al. 2014). Conclusion Caregivers deserve integrated, responsive, relevant supports to protect and enhance their capacity to care to the extent that they wish to care and for as long as they choose to continue to care. The socio-political context is the constant back-drop to the caregiving experience and currently, in Ireland, this context does not reflect the centrality of care to human life.