Conversation therapy groups support dementia sufferers

Dementia sufferers can be greatly helped by sharing their experiences and supporting each other in self-help groups, says Linda Örulv, a researcher at the Centre for Dementia Research who has followed the progress of a group of pioneers in the field.

Linda Örulv

When she sought contact with conversation therapy groups for dementia sufferers she was often met with surprise.

“In local patient associations and municipal activities they wondered if dementia sufferers themselves would really be able to benefit from conversation therapy groups. However more recently I’ve encountered a great interest in the experiences from my research,” Linda Örulv continues.

Eventually she came into contact with a conversation therapy group that she then monitored for almost three years. The participants were in the early stages of dementia and met regularly to support each other and process their experiences.

“In the group they were able to learn from each other’s experiences and find strategies to deal with everyday situations as well as the frustration that the illness brings. It was a relief to be part of a context and know that they were not alone in their experiences.”

When interacting with their surroundings they were battling on two fronts. They were constantly being met by negative images of the illness, and risked either not being taken seriously; since “we all tend to forget things sometimes”, or simply being dismissed as mad.

“Not only did they have the illness itself to deal with, they also had to point out both their difficulties and the capacities they still retained,” Linda Örulv explains.

She recorded the therapy sessions and made sure that everyone had the opportunity to finish speaking, and the fingerspitzgefuhl (finger tips feeling) that the participants demonstrated in helping each other find words. She also saw evidence of both self-perspective and humour, which allowed them to laugh at their own follies.

“They didn’t need to keep up appearances with each other, and they also refused to feel ashamed.”

Linda Örulv describes how a pair of late arrivals had been riding up and down the lift a number of times before they at last got to off on the right floor.

“They entered roaring with laughter and got the others laughing too. In between outbursts of laughter they managed to explain what had happened and that they’d lost count after 16 runs in the lift. “

Worries about family members and the future were recurring subjects of conversation. They didn’t want to burden their families and were worried about problems they might cause. They also lived with a sense of not being in control of their own future, since decisions about e.g. housing would only be made when their need was so great that they would no longer be able to exercise any influence.

“They wanted to take part in the decisions and not wait too long to move to special housing, so they’d have time to get used their new home. It would also be difficult to adapt to a new environment late in the course of the illness,” Linda Örulv says.

The group she monitored were also opinion makers working to spread knowledge about dementia illnesses. They took part in training programmes for decision makers, health care staff and family members, presented themselves on the internet and appeared in the media. They related their own experiences to a wider social debate and wanted to regain the preferential right to interpretation about the illness they themselves are living with.
The group is still active, even if some members have left and others have joined.

“The problem for dementia sufferers who are relatively capable is that they don’t belong anywhere, and instead end up in the gap between geriatric and municipal activities. The support for dementia sufferers has not yet been adapted to the fact that the diagnosis is made ever earlier,” Linda Örulv says.

Her view is that self-help movements for, by and with dementia sufferers could be an important key for knowledge regarding the planning for an ageing population.

“They could also create the conditions by which dementia sufferers might increase their influence over their own situation and be part of a social context.”

Linda Örulv’s research about self-help groups was recently published in the International Journal of Self-Help & Self-Care:

Research

Conversation therapy groups support dementia sufferers

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