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Clinical care and clinical services
O06 Huntington's disease: difficulties of family caregivers
  1. H Soares1,2
  1. 1Portuguese Association of Huntington Patients, Lisbon, Portugal
  2. 2Portuguese Catholic University, Palma de Cima, Lisbon, Portugal

Abstract

The family caregivers are the most important part of the informal and social support network of those who are sick or disabled (Sanchez 2002). Because of the characteristics of Huntington's disease, such as the unknown possibility of cure, the progressive loss of autonomy and life expectancy resulting from an accelerated progression of the symptoms leading to death. The informal caregivers including family members, face different problems capable of causing serious changes in their quality of life. So the well-being of family caregivers is a concern for the health professionals especially nurses, since they support them in this caring process and must help them stay in the community, more specifically by those who have ties of affection. With this literature review intended to determine the difficulties faced by caregivers of people with Huntington.

Conclusion You could say that the situation of family caregivers is a health problem of it's own as it affects not only themselves but also the people target of care (Pinto et al, 2005). So the family caregivers of people with Huntington's disease face many kinds of difficulties: psychological, physical, emotional, economic and social. Based on the characteristics of the disease and permanent availability necessary in caring for someone with HD, may experience the feeling of “disintegration of their lives” (Paulson 2011). As a result of all the activities they have to do, time spent with them and privations of a personal nature that are subject, may still develop diseases resulting from this activity and are therefore deserving of our full attention (England & Roberts 1996).

  • Family Caregivers
  • overload
  • difficulties

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