Older adults with Huntington's disease in care homes : what quality of life?

Abstract

Huntington’s disease (HD) is a progressive hereditary neurodegenerative disorder, characterised by involuntary choreic movements together with behavioural, cognitive and psychiatric disturbances. When compared to other countries, Malta has been shown to have a higher prevalence of adults with this condition with a percentage of them being admitted into long-term care facilities as the disease advances. Although they differ demographically from other residents and have specific needs, they tend to be treated similarly in such institutions. This study was carried out in order to assess how the quality of life (QoL) of persons in the middle or late stages of HD was affected in such care homes with the hypothesis postulating that it was potentially low. Two institutions were studied, Saint Vincent de Paul (SVP) and Mount Carmel Hospital (MCH), since HD patients requiring long-term care locally are admitted there rather than in community homes because of their complex and behavioural problems. The QoL of older adults with HD was investigated not only from the perspective of patients and their relatives as informal carers but also from that of nurses as formal carers, considering also the important role of the nurse in voicing the patients’ and carers’ concerns. A mixed method design was used to obtain data. Qualitative data was obtained from patients and their informal carers (n=8) by conducting semi-structured interviews using the Wisconsin QoL index tool. Quantitative data was obtained from nurses (n=18) by using a questionnaire adapted for this study. Participants were chosen through purposeful sampling. Data was analysed by using an Interpretive Phenomenological Approach (IPA) and the IBM Statistical Package for Social Sciences (SPSS). Six main themes were identified from the results obtained. All participants agreed that an admission into geriatric and psychiatric settings was inappropriate for older adults with HD and affected their QoL. They affirmed that specialised settings and an HD nurse specialist should become available. On the other hand, a considerable number of participants emphasised the potential psychological consequences of individuals with HD all living together in one residence and the effects this might have on each other and hence their QoL. The findings also indicated that there was an overall lack of education, understanding and resources for individuals with HD, their families and formal caregivers. In conclusion, the findings of this study are similar to those obtained in previous studies carried out abroad. They recommend that greater efforts are required to improve the QoL of HD patients in care homes. More research is required even locally, and further studies should concentrate mainly on the perceptions of persons with HD rather than those of informal and formal carers.