When the carers need carers…
30 November 2006
A strong network of support is as important for the relatives who care for people with Motor Neurone Disease as it is for those who have the condition.This was the theme of a clinical session on the opening day of the 17th International Symposium on ALS/MND in Yokohama, which looked at the area of carer support.
“All of us in close relationships care in a practical and emotional sense for the other,” said Jan Oyebode, from the UK’s University of Birmingham, in a paper she presented to start this session.
“However, in the presence of debilitating illness, the balance changes. The disabled individual is forced into dependence and the able partner into caregiving. The additional activity and responsibility can cause significant stress and distress.”
Ms Oyebode, who is a specialist in dementia care, said many of the lessons learned in dealing with dementia could also be applied to supporting the carers of people with MND.
She described caregiving as a “journey” that the carer and the care receiver went on together, with rewards and stresses along the way. Chief “stressors” included the physical work involved in care, interrupted seep, changes in the relationship and financial strain.
She said that in the case of people with MND, communication issues and emotional lability may add to the carer’s burden, but the “mutuality” that came from a shared understanding of each other’s situation meant that the burden may not be so great as in dementia care.
Interventions by clinicians, to alleviate the burden on the carer, needed to be intensive, individually tailored and family oriented, said Ms Oyebode. The aim should be to encourage acceptance and a sense of control on the situation. “It may be that these twin ways of coping are particularly helpful in a caregiving situation,” she said.
The stress placed on carers was further explored by researchers at the La Trobe University in Melbourne, Australia, who presented the results of a survey of carers. This showed that many suffered increasing “losses” as their time as a carer increased. Losses included relatives not keeping in touch, difficulties in relationships with friends, stress caused by the unpredictability of MND and financial problems.
Carole Mockford, from the University of Oxford in the UK, suggested that professionals could fill the gaps where a carer’s own support circle is insufficient.
She said: “Not all carers are proactive or confident enough to actively seek support or advice. Some carers may find it difficult to prioritise their own needs or declare they have problems. On the whole, it would appear that standardly available emotional support would be welcome from the professional services.”
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Notes to editors
The 17th International Symposium on ALS/MND is taking place in Yokohama, Japan, between Thursday, 30 November and Saturday, 2 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the Japanese ALS Association (JALSA).
