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K29 Spreading of the awareness about huntington's disease in residential care facilities
  1. Monika Baxa,
  2. Pavla Sasinkova,
  3. Martina Musilova,
  4. Jiri Hruda,
  5. Zdenka Vondrackova
  1. Czech Huntington Association, Hradec Kralove, Czech Republic

Abstract

Background Huntington's disease (HD) is a rare neurodegenerative disorder. Despite of a great health care in residential care facilities, the general awareness about HD specifically is very low in the Czech Republic. Therefore we monitor current network of the care facilities which house/could house HD patients and educate their personnel about the disease and about the problems and needs of the patients.

Aims To provide appropriate quality of life for HD patients housed in residential care facilities.

Methods Neurologist, professional caregiver and member of Czech Huntington Association have a set of 3 lectures for the personnel of residential care facilities. The lectures should enable to cope with the patient’s admission and his subsequent care. We travel across the whole country in the effort to enable the frequent visits together with a cheap travelling for a short distances to the families.

Outcomes We educated more than 400 caregivers and social workers of 12 residential care facilities in the Czech Republic during the last 2 years. Moreover, we monitor the care conditions and housing capacities in the care residential facilities.

Conclusions Spreading of the awareness about HD in residential care facilities could help to increase the quality of life of HD patients.

  • quality of life
  • awareness
  • residential care facilities

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