Helping a person with care needs demands considerable energy, and can be both physically and psychologically draining. The family carer is confronted with a fourfold emotional, psychological, physical and financial strain.
Without support, caring can quickly become unbearably burdensome, and result in illness, fatigue, exhaustion, and the breakdown of family and social ties for informal carers, whose quality of life and general health are impaired.
Studies have highlighted the shortened life expectancy of carers. The factors leading to carer burnout must be prevented also to the benefit of the care relationship, the couple and the overall family cohesion.
The siblings of disabled children are particularly apt to be affected by the impact the disability has on the family and need specific support. Carers’ own physical and psychological fatigue can also seriously affect the person cared-for, blight carers’ attempts to maintain good relationships with their parents or life partners, and compromise their role as parents.
Respite represents, for family carers, the response to a need for a break, a time in which to relax. Respite is a way to re-charge and helps to prevent physical and mental exhaustion of family carers, and offers reassurance about the quality of care provided to the person assisted. Carers must be able to enjoy respite without any financial consequence, as in the case of paid leaves for remunerated workers.
Family solidarity has long filled the public policy gaps on disability and care needs in different European countries. Parents, partners, children and siblings are often requested to respond - by choice or by default - to the care needs of persons with disabilities and other dependent persons in their immediate circle. This entails important consequences for their own health and quality of life, particularly for women - who still mostly bear the burden of these responsibilities.
Recognizing specific rights to family carers through a formal status is therefore essential to enable them to enjoy the same opportunities as all other citizens and ensure that they are not penalised in their family, personal or professional life.
Respite is mentioned in the Convention on the Rights of Persons with Disabilities as one of the measures to be taken to ensure an adequate standard of living and social protection. Guarding against carer burnout is also fundamental to preventing neglect and abuse.
The United Nations Convention on the Rights of Persons with Disabilities expressly requires the contracting parties to take appropriate measures to prevent all forms of abuse or violence “by ensuring, inter alia, appropriate forms of gender- and age- sensitive assistance and support for persons with disabilities and their families and caregivers”. Family carers therefore have a right to be helped and supported in their task, and the best way to do that is to establish cash benefits, quality services (including respite care services) and appropriate solutions that will enable them to bring balance to their family, professional and private life.
Published on 09 Nov 2011
Updated on 02 Dec 2011