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More support needed for women caring for elderly men at home after stroke

The hardest aspect of looking after your partner after stroke is not the physical disability but personality changes and a lack of support from society. This has been highlighted in a study from the Sahlgrenska Academy, at the University of Gothenburg, Sweden.

Previous research has found that around 70% of elderly stroke patients are dependent on help from their partner. Most of this informal care is provided by elderly women.

In a study at the University of Gothenburg’s Sahlgrenska Academy, researcher Gunilla Gosman Hedström made a qualitative study in elderly women whose partner had stroke. Her study shows that many experience a serious lack of support and information from society.

Like “living with another man”
Initial support focuses on practical devices to make home-based care possible – but everyday life then throws up some very different problems. In Gunilla Gosman Hedström’s study, women reported frustration that they no longer recognised the man to whom they may have been married for as many as 50 years.
“Many stroke patients suffer from concentration problems, fatigue, irritation and difficulties communicating,” says Gosman-Hedström. “This means that the couple lose the intimacy and closeness that they once shared, which causes considerable sorrow. The women find that it’s like ‘living with another man’.”

Fear and guilt
In the present qualitative study, recently published in the Scandinavian Journal of Caring Sciences, 16 elderly women (median age 74) discussed their experience in focus groups. The results show that many live in constant fear of their partner suffering another stroke, and that they also feel guilty about any feelings of irritation they might have.

“The women saw their partners more as patients than as husbands,” Gunilla Gosman Hedström explains. “They felt tied down with little time to devote to their own needs, and the partner's altered personality meant that many had cut down on socialising.

“Many have little time to themselves. They try to create time to carry out everyday activities, but the men struggle to be by themselves. For many women, the only chance of some ‘own time’ was to silent get out of bed once their partner was asleep for the night.”

Despite the negative aspects, the women in the study wanted to continue to care for their husbands at home. However, they did call for more support, such as dayrehabilitation, longer periods of respite care, and greater consideration from health care- and social services. The researchers’ conclusion is that relatives should be offered special educational and training programmes, support groups of women in the same situation, and greater scope for individualized long-term action plans as different problems arise.

“If relatives did not provide this care, the health care- and social services would face a huge need for new care places at a cost far in excess of that of providing more support for informal carers,” says Gunilla Gosman-Hedström. “These women find that their help and support are taken for granted – in many cases they’re not even asked at discharge whether they’re actually able and willing to take care of their partner.”

The article “Mastering an unpredictable everyday life after stroke” was published in the Scandinavian Journal of Caring Sciences in February 2012.

Stroke is an umbrella term for cerebral infarction and cerebral haemorrhage and one of the most costly diseases in Sweden. Around 30,000 people suffer from strokes each year in Sweden , the majority of them over the age of 70. Around 100,000 people in Sweden currently live with some form of stroke-related disability.

Bibliographic data:
Title: “Mastering an unpredictable everyday life after stroke”
Journal: Scandinavian Journal of Caring Sciences in February 2012.
Link to article:
Authors: Gunilla Gosman-Hedström PhD Associate Professor, Synneve Dahlin-Ivanoff PhD Professor

For more information, please contact:
Gunilla Gosman-Hedström, Associate Professor and Reg. Occupational Therapist, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg
Telephone: +46 (0)31 786 5727

Helena Aaberg | idw
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