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H06 Training in care specifics of huntington´s disease
  1. Martina Musilova,
  2. Zdenka Vondrackova,
  3. Pavla Sasinkova
  1. Czech Huntington Association, Hradec Kralove, Czech Republic

Abstract

Background The project focuses on the education of carers, employees of social facilities and students and staff of educational institutions. Huntington’s disease (HD) is a very specific neurodegenerative disease and the care of HD patients is complicated. HD patients acceptance to social facilities is very problematic. Most institutions are not familiar with HD or have not enough experience. Particularly in the illness terminal stages institutional care is very much needed.

Aims From the experiences in the Czech Republic and abroad we know the care for HD patients can be handled if the staff is well trained. During the lectures the staff is familiar with the issue of HD and the care specifics. Afterwards the institution can accept HD patients as their residents. This improves the quality of life not only of the patients themselves but also of their families which are heavily burdened in the home environment.

Methods/techniques Czech Huntington Association has a multidisciplinary team of experts, collaborating physicians and therapists who can provide lectures on the specifics of HD care. Lectures and seminars for social facilities and educational institutions raise awareness of HD. The lectures and workshops materials are freely available to all participants.

Results/outcome This training project started in 2014. Since then, lectures have been held in 17 social facilities and at the Faculty of Education at Charles University in Prague. All care institutions can accept HD patients depending on their actual availabilities.

Conclusion The aim of the project is to create a network of special social facilities throughout the Czech Republic that can accept HD patients. The social facility fulfils these criteria: The offered care is professional, the staff is well informed and acquainted with the specifics of HD patients care. Thanks to wide network of possible care institutions the patients’ social contact with the family can be maintained.

  • institutional care
  • long term care
  • multidisciplinary team
  • education

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