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Understanding the hidden needs of carers

Around 90% of people with dementia exhibit some form of challenging behaviour, including states of agitation and aggression. This is one of the most challenging aspects of care. As well as causing distress to carers, it can lead to inappropriate medication or hospital admission.

Different strategies including behavioural interventions are recommended to cope with these behaviours, but carers respond to these in different ways. This review aimed to find out what evidence there was on how carers experienced challenging behaviour and how they might respond to different kinds of support.

The NIHR has funded a programme of research on managing challenging behaviour by people with dementia in the community and care homes. As part of this work, a review was undertaken of research exploring the needs and adjustments of carers of people with dementia. Twenty five high quality studies were identified. The team was able to draw out some high-level explanations and lines of argument from this evidence, despite the variety and complexity of studies.

A key finding was the level of unmet need and distress among many carers who struggled to adjust to their new reality. This included feelings of shame, stigma and embarrassment around anti-social behaviour. Other studies highlighted the sense of loss and detachment from the person with dementia and fears of an inevitable loss of identity. For some, a feeling of catastrophe affected the carers’ ability to benefit from support programmes for dealing with challenging behaviour.

These were complex and nuanced insights, but some practical pointers emerged from the review of published research. Carers will respond differently to interventions that manage challenging behaviour, depending on a range of factors including the nature of attachment and relationship to the person with dementia.

In a related study by the team, analysis showed that psychosocial factors such as guilt and feelings of competence could account for much of the distress associated with challenging behaviours and interventions should address these. Carers’ needs were likely to vary and support should be personalised as much as possible. An important feature, highlighted by this review, was the skilled support for carers to adapt to new ways of communicating with their relative and being realistic about expectations.

The review reveals the elements of loss and shame which carers experience. The authors suggest that support programmes for carers, which often focus on practical tips and strategies, should also consider some element of psychosocial support to address some of their hidden needs, even if this is not actively asked for by carers.

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