Multicenter Prospective Cohort of Informal Caregivers in Burgundy and Franche-Comté – ICE

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Medical progress and the transformation in our way of life have prolonged life expectancy, and people now live to a very old age, despite the appearance and development of chronic diseases associated with comorbidities. The issue of dependence has thus become a major political challenge. For many years, policy has reflected the wish to enable elderly people in the process of losing their autonomy to live at home for as long as possible. This wish expressed by elderly people to continue to live at home therefore depends essentially on a network of informal care (family, friends, neighbours). People who are designated as caregivers thus carry the responsibility of providing the care required by the elderly person in question, and this relationship may jeopardize their own physical, mental and social well-being.
Currently, little is available to support caregivers in the day-to-day attention they give to their sick loved ones, and sometimes, paradoxically, support that is available does not reach those who need it. Many professionals in this field speculate that the behaviour of informal helpers, notably concerning their ability to obtain the aid that is available to them, depends on the lives they have led, and on their social, financial and territorial environment, and therefore needs to be studied in the long term. The ambition of the ICE Cohort (Informal Caregivers of Elderly), initiated by the Pôle de Gérontologie Interrégional Bourgogne & Franche-Comté (PGI) is to define, thanks to a longitudinal study of their life course, the profiles of caregivers whose charges, aged at least 60 years old and living in Burgundy or Franche-Comte, have one of the following diseases: cancer (breast, prostate, colon-rectum), neuro-degenerative diseases (Alzheimer’s and similar diseases, and Parkinson’s disease), neuro-vascular disease (Cerebrovascular Accident (CVA)), sensory disease (Age-related Macular Degeneration (AMD)) and heart disease (heart failure).
By following the different phases of the care relationship from the announcement of the diagnosis will make it possible to analyse the quality of life of caregivers and to test a pragmatic action to help caregivers through a randomised intervention trial nested in the cohort. Thanks to an analytical and longitudinal definition of the profiles of caregivers, this study could gather information on the life courses of the caregivers and the care trajectory. In addition, the randomised intervention trial will evaluate in an exploratory manner the efficacy of an action to support the carer. This support will be provided by a social worker. These data will make it possible to identify strategies that could be used to improve the existing sources of aid and to propose new approaches to help caregivers. These approaches would be targeted and optimized in terms of the caregiver’s well-being and quality of life as well as cost. This study will provide the opportunity to identify the most relevant means of support and to give an impulse for new healthcare policies. We believe that the improvement of support for caregivers could ultimately contribute to highly effective medico-social assistance and follow-up of patients. We answer this call of project for four years of Cohort (neuro-degenerative, sensory, neuro-vascular and heart diseases).