Most dementia carers given no information on key support issues

More than half of all carers of people with dementia have not had information about medicines management, incontinence or legal issues such as Lasting Power of Attorney, new research has found.

The findings, in a study from the University of York and Firefly Research and Evaluation commissioned by the Carers Trust, also revealed 52% of carers had had difficulties obtaining a diagnosis for the person for whom they cared, and only 51% had been given the chance to talk separately about how much care they felt able to provide. In addition 68% of the 325 carers questioned had not had training or advice on dealing with the agitated behaviours that develop in the later stages of the illness.

One carer, Ian, said a specialist dementia nurse had not visited until 18 months after his mother came to live with him and only then was he invited him to attend a carer’s course.

“I could have done with the information a lot sooner because prior to this I hadn’t appreciated that much of Mum’s contrary and difficult behaviour was due to dementia. Once I understood that I could to some degree make sense of it and cope with most of it.”

Another carer, Elaine, said she found it incredibly difficult to deal with her husband’s double incontinence and felt ill-supported as the local policy was not to provide incontinence pants and she was never given information or advice about local laundry services or support options.

“It was all the issues around incontinence that were the final straw…it would be all over the carpet and he had just walked in it and I thought I just can’t cope with this anymore.” Her husband was moved into residential care.

A third carer commented she would have appreciated a file containing all the information they might need so it could be referred to when issues arose. “As it is I have to go digging, researching, chasing people.”

Thea Stein, chief executive of the Carers Trust, said it was clear that all professionals needed a checklist of all the information and advice carers needed both in the immediate and longer term future. This should be regularly gone through with carers at key points of the person with dementia’s illness.

The report highlighted seven critical points when carers most felt in need of information and support. These included when dementia was first diagnosed, when the person loses their mobility, when they begin exhibiting behavioural problems and when they become incontinent.

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