Background Huntington Expertise Centre Atlant offers multidisciplinary care to 50 Huntington disease (HD) patients institutionalised in 2 Skilled Nursing Facilities (SNF) and to 25 ambulatory patients. These ambulatory patients visit our day care centre on a regularly basis.
Several HD patients suffer from fatigue due to traveling to and from the day-care centre. In addition, informal care givers often feel overburdened being 24/7 responsible for the care of their next of kin. This may lead to unnecessary early admissions of HD patients. In general, admission to a SNF is a major step for HD patients. In order to delay admission and to relieve the burden of the informal caregivers, we developed an overnight stay facility. In this facility, HD patients can stay 1-2 nights per week; 2 consecutive nights or 2 nights distributed over the week as appropriate.
Case histories In this case report, we describe 4 HD patients using the overnight stay facility. Given the physical condition and the emotional distress of their informal caregivers, these patients faced immediate admission. By offering the possibility of overnight stays, the patients were in a better condition participating their day care program. In addition, they had the opportunity to get used to the SNF, so that eventually admission would be a logical next step. The informal caregivers experienced fewer burdens and they had some more time for themselves. Patients and caregivers were very satisfied with this intervention: it delayed admission for 2-11 months.
Conclusion The overnight stay facility may delay admission in a SNF by a mean of 7 months. Our HD patients were more rested and better able to undergo their treatment, and institutionalisation seemed to be a smaller step for these patients. In addition, informal caregivers were able to care for their next of kin for a longer period.
- overnight stay
- delay institutionalization
- smaller step
- more rested