Huntington’s Disease: normalizing the extraordinary

Mara Tognetti
Mara Tognetti

by Mara Tognetti, Professor of Health Policy at Milan-Bicocca University, Italy

The research project “The community takes care of Huntington’s Disease” – piloted by the Observatory and Methods for Health at the Department of Sociology and Social Research of Milan-Bicocca University and directed by the present author – has conducted free interviews to learn about how health workers and relatives find the task of assisting people with Huntington’s Disease (HD). This is an incurable neuro-degenerative genetic complaint which sets in during the prime of the individual’s life cycle and puts paid to the social and physical existence of patient and family. It places social relations under enormous strain and completely disrupts family, working and social life.

For this reason, and because no kind of therapy yet exists to retard or halt progression, the challenge is both to search for an effective cure and to find ways, from the outset, of supporting those who shoulder the burden: the patient, the family and the health workers.

The research aimed to provide a picture of family needs and difficulties in looking after an HD sufferer. We particularly looked at how caregivers perceive their own requirement for time off for themselves, on the assumption that that factor reflects on their quality of life and the care they provide for the patient.

This qualitative study involved twenty families living with HD. Data collection was based on a semi-structured interview probing the relevant areas:

  • how to make the diagnosis known;
  • the needs of the patient and the family;
  • the needs of the caregiver: recreation and time for self.

The interviews exploring these specific areas were geared to helping self-help groups to form. The question of free time was investigated by an open-ended questionnaire.

Data and discussion

Families face many difficulties and have a great many needs when looking after HD patients, especially how to openly discuss with them the nature of the disease. Family needs incorporate the difficulty of managing the patient, and their wellbeing is closely bound up with meeting the latter’s needs.

To begin with, relatives have cognitive problems in fully grasping the symptoms and how HD will evolve, so as to work out how to organize and reorganize the family. They require encouragement and support in assisting the patient, which is done in the family setting as long as the symptoms permit. An HD person depends on constant assistance.

Some authors (Williams et al. 2009) have shown how carers of HD patients undergo great emotional stress from having to maintain multiple roles and lead a whole phase of life that differs from their expectations and abruptly terminates their ability to plan their own lives.

Caring for a relative becomes a taxing task, invisible to society and entailing physical, material and organizational dimensions and coordination with the services. The picture that emerges is one of renunciation and suspension, the effects of which tend to be underestimated: on oneself, other family members, and especially on children. The situation bears on the quality of care given to the patient, and on the carer’s process of normalizing the disease.

Isolation means alienation from the world and one’s own leisure time, which saps one’s ability to work out how to cope with the burden of care. Complete absorption in looking after a sick relative causes one to lose awareness of one’s own interests and pleasure activities. The danger is of not seeking time for oneself and becoming disoriented over what to do about the situation (Williams et al., 2009). Those interviewed do not reflect how creating time for themselves will enable them to battle on, and how essential it may be in improving the quality of the time they devote to the partner or relative with HD. Some authors (Hepburn et al, 2008) claim that caregivers who spend time on themselves are able to cope better with the daily challenges and get greater satisfaction out of their role.

Again, Williams et al. (2009) stress the need to set limits and create time out as a carer strategy that helps to cope with the sensation of one’s life being eroded. Our work shows how carers need more than health treatment: they require time and space just for themselves, to improve the quality of their caregiving.

References

  • Hepburn et al., 2008, Manuale del caregiver. Programma di formazione per l’assistenza alle persone affette da demenza. (Ed. Italiana ed. Bartorelli L.), Rome, Carocci.
  • Williams et al., 2009, The emotional experiences of family carers in Huntington’s Disease. Journal of Advanced Nursing 65 (4): 789–798.

If you enjoyed this blog entry, you may be interested in a similar article: Representing the family: how does the state ‘think’ family?

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