In the Netherlands the majority of Huntington’s disease (HD) patients spend their last years in a long term care facility (LTCF). Despite the wish to stay at home, care for HD-patients is almost always very exhausting and crises and challenging behaviour regularly lead to admission to a LTCF.Background/aim
From 2008 on an outpatient clinic (OC) situated in a LTCF has been operated to offer coordinated outreach treatment and care to ambulatory HD patients. Functional optimization for the patient and optimal support for informal caregivers and family have been offered by biannual assessments of functioning and problems. A personal treatment and care plan is executed in the dwelling place of the patient under coordination of the OC. The main goal of the project is to decrease crises and challenging behaviour.Methods
This specific Dutch LTCF problem-oriented-method consists of functional assessments and multidisciplinary deliberation on prognosis and therapy resulting in a treatment and care plan offered to patient and family. Data were collected from patient files and questionnaires. Patient and caregiver problems were investigated in a pilot study qualitatively.Results
Over the last ten years 175 patients were seen in the OC. Until spring 2018 34 patients were admitted to LTCFs and 35 patients deceased. The pilot study comprised 10 patients. What patients bothers most is the unknown course of the disease and how to stay in control. Informal caregivers suffer from feeling lonely in their role and from the constant threat of arguments. Patients and caregivers appreciate the OC.Conclusion
Offering coordinated outreach care from the OC to the patient at home and including patients in a quantitative and qualitative study appeared feasible gives insight into the needs of patients and their families.