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H13 Continuously in contact from one human to another – behaviour, daily interactions and quality of life in huntington’s disease
  1. Josine Engels1,
  2. Welmoed Liefrinck1,2,
  3. Peter Boin1,
  4. Annette Lasschuijt1
  1. 1Topaz Overduin, Huntington expertise centre, Katwijk, The Netherlands
  2. 2Leiden University Medical Centre


Background Topaz Overduin offers long-term care to residents in order to manage their neuropsychiatric and behavioural problems and thereby increase their quality of life. These processes are shaped in daily care and are often intuitive and intangible. Therefore, the key for clarification lies in understanding the interactions between residents and caregivers.

Aim To contribute to knowledge and consciousness about the interaction between residents and caregivers and the effects thereof on behaviour and quality of life of the residents. These results are meant to offer a foundation for further research on these themes, for the exchange of expertise and knowledge and furthermore, the results will be used for the improvement of daily care.

Methods This explorative qualitative research used mixed methods: semi-structured interviews with families and formal caregivers; conversations with residents; participant and non-participant observations.

Preliminary results The acknowledgement of residents as human beings, underneath the face and behaviour of the disease, is referred to by all participants. Trust, feeling safe, being themselves and understanding is mentioned by the residents. Observations showed that their functioning and feeling of self is complemented when necessary and thereby, their isolation and suffering is alleviated and identity is strengthened. Constant patience and flexibility of the caregivers is essential. Their role is crucial in building relationships with residents in which they continuously try to find the right balance. Clear communication, reflection, coordination and alignment in the care teams as well as interdisciplinary are important preconditions.

  • quality of life
  • interaction
  • behaviour problems

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