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What support do carers value most to prevent and manage crises?

An online survey of health professionals and carers was carried out to understand different perspectives on the causes of dementia crisis and the most helpful kinds of support. This was the first large-scale survey of this kind. Crisis situations happen when the carer cannot cope or there is an exacerbation of behavioural, mental or physical health problems.

These crises can lead to the person with dementia being admitted to hospital or care home, some of which may be prevented by better support. There were 719 responses to the survey, the majority from healthcare professionals (562 or 78.2%) but also 54 carers (7.5%). The carers were grouped as consumers together with the small number of respondents who were people with dementia (4 or 0.5%) and those working in the voluntary sector (12 or 1.7%).

Results from the survey showed important areas of agreement and differences between the different stakeholders. In terms of causes or triggers for crisis situations, there was consistency in ranking highly factors such as wandering, aggression, falls, infection, carer burden and environment. This reinforces existing evidence on causes of crisis, however, there were also some differences. Compared with staff views, carers seemed less concerned about aggression and more concerned about level of impairment. Carers also rated continence more highly than professional staff as a reason for precipitating crisis. They rated abuse, neglect and alcohol consumption as lower risks than professionals in the environment. They also did not think involving people with dementia in future care planning decisions was as important as health professionals.

In terms of interventions to manage crisis, there was reasonable agreement across all stakeholders of the importance of emergency contacts and care, well-trained home care staff, communication equipment and access to respite services. Reliance on emergency departments in crisis, which may have other harmful effects (longer hospital stays, risk of infection, confusion) raises the need for services to explore the need for alternative community-based provision. In terms of preventing crisis, education and support for carers, as well as appropriate home support, were ranked highly by all.

This survey is part of a wider NIHR programme of research to develop and test appropriate packages of home support for people with dementia in crisis.

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