Older people living alone (OPLA) - Non-kin-carers´ support towards the end-of-life

A growing number of older people mainly women is living alone. They form a vulnerable group with regard to staying at home in case of care needs and especially at the end of life. Although home care services have been developed all over the country in the last years, the availability of an informal carer in the same household still is a preliminary for home death. Friends and neighbors may provide an important source of support, but as informal caregiving is mostly understood as family caregiving little regard has been paid to non-kin-carers yet. However, the question arises whether this kind of support is robust enough that staying at home for older people living alone even at the end of life is possible. This study aims to better understand how older people living alone and their non-kin carers manage to face the challenges with increased care needs towards the end-of-life. The aim is to capture change as it happens, and to correspond to the individual dynamics towards the end-of-life. Therefore this study is designed to generate longitudinal case studies by conducting serial interviews. After a baseline interview, further personal interviews with the older person and a nominated non-kin-carer for a period of 18 months will be conducted. In case of death of a patient, a retrospective interview will be performed with the main informal caregiver about 3-5 months later. A total of 20-25 complete data sets (cases) and up to 200 interviews are planned. All interviews will be transcribed and analysed following procedures of qualitative research. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer. With this study we aim to analyse the potential of non-kin-carers in home care arrangements and identify gender specific patterns therein. Therefore we cooperate with the Research Institute for Economics of Aging at the Vienna University of Economics and Business (formal-informal-care expertise) as well as with the Institute of Palliative Care and Organisational Ethics at the Alpen-Adria University of Klagenfurt (gender expertise). This is the first study in Austria which puts a focus on older people living alone. Equal opportunities to stay at home if preferred until death should exist for all groups of older people in society. This affords care arrangements which include support of non-kin-carers as well as professional services which are aware of the needs towards the end of life. Knowledge of the interplay of formal-informal care encounters of older people living alone, as will be provided by this study, will be vital for future developments in home care for the elderly.

With increased age the number of older people living alone (OPLA) is growing, at least in most countries of the Global North. As care needs increase, they are particularly vulnerable when it comes to remaining at home at the end of life. Friends and neighbours are important resources for support but as informal care has been mainly understood as support from family members in research and policy, little attention has been paid so far to potential non-kin care. Including this group seems to be vital for developing caring communities and meeting increased care needs in an ageing society. The qualitative longitudinal study "Older People Living Alone (OPLA) - Non-kin carers' support" was designed to gain fundamental knowledge on the care arrangements of older people living alone in the community over time including end-of-life issues, with a specific focus on the contribution of non-kin carers. Different key aspects were investigated based on multiple qualitative data (84 interviews) including serial interviews over 1.5 years with 13 OPLA and with non-kin carers (n=20). Semi-structured qualitative interviews were conducted with 32 OPLA living in urban and rural areas in four Austrian regions for a baseline analysis. As a key result, we identified three types of care arrangements: (1) arrangements with manifold non-kin involvement, (2) arrangements with scattered ties with non-kin, and (3) arrangements with few non-kin ties and involvement. We identified and characterised four groups of non-kin carers relevant for OPLA such as friends, neighbours, acquaintances, and club members. As the longitudinal study showed, over time OPLA face numerous challenges due to the simple fact that they are living in a single household. Any "loss of function" which tends to accompany the process of ageing requires an immediate response from the older person; this affects household chores, activities of daily living, financial matters, and health issues. Furthermore OPLA must provide or plan for all kinds of unforeseen incidents. To face these challenges, OPLA apply the following key strategies: looking ahead and facing risks (reassessment), balancing needs, and rearranging support. Gendered differences were evident across all themes. With regard to end of life, our findings emphasize that non-kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non-kin carers providing end-of-life care for OPLA. Our study highlights the diversity of non-kin support in the care arrangements of OPLA, which should be considered by policy makers when promoting informal care.