Skills of Home Helpers for a Better Quality of Life for Adults With Huntington's Disease Living at Home

Skills of Home Helpers for a Better Quality of Life for Adults With Huntington's Disease Living at Home

Huntington's disease often brings together 3 types of symptoms at one time or another of the disease during its evolution: motor, cognitive and psychiatric. Management requires comprehensive and multidisciplinary health, social or medico-social support. Its development generates additional difficulties for professionals who very often qualify this disease as "very complex" because it leads to a deep and severe impairment of physical and intellectual capacities. The sick person gradually loses their autonomy and becomes dependent for the acts of daily life, hence the choice of this disease for our study. Our study is focused on the quality of life at home of patients followed by the Angers Reference Center, "expert" on neurogenetic pathologies.

Studies focusing on patients' quality of life at home have so far never been undertaken for a rare neurodegenerative disease like Huntington's disease.

Selection Criteria:

Patient group :

• Genetic diagnosis of Huntington's disease
• Symptomatic patient
• Patient living at home
• Person able to carry out the interviews provided for in the study

Caregiver group :

• Person, defined within the meaning of the CNSA (National Solidarity Fund for Autonomy) as a natural caregiver, not concerned himself by the risk of developing the disease
• person able to carry out the interviews provided for in the study

Home Helper group :

- Professionals working at home with Huntington's disease patients employed by home help service providers.