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Barbara Pointon MBE discusses the four quality outcomes for family and friends who care for people with dementia

Barbara PointonBarbara Pointon

Barbara said research recognizes that caring for a person with dementia is very stressful, of longer duration and more intensive than most other kinds of caring, and it can undermine the carer’s own health and well-being.

Involvement begins pre-diagnosis. The person with dementia has no memory of the problems being encountered, so thinks there’s nothing amiss. The family carer sees the whole truthful picture, yet sometimes is not allowed to see the GP independently. Too rigid an application of ‘patient confidentiality’ can delay diagnosis, and block the gateway to early support.

After diagnosis, the first quality outcome is gaining immediate access to expert and personalised advice about dementia care, together with practical and emotional support for the carer throughout the journey. This would be revealed through the carer’s needs assessment, now automatically offered. Without advice, the carer tries their best, but, unwittingly, can offer the wrong kind of care. A little money spent on carer support early on will prevent more expensive  crises occurring further down the line.

In the middle stage where perplexing behaviours are common, all is not what it seems and carers have to be shown how to search for the reasons behind the behaviour in order to respond effectively and protect the relationship. Throughout, but especially in the advanced stages, a single source of expertise is required, (e.g. a dementia practice nurse) leaving little need for advisory professionals to be called in for different aspects of care. At a stroke it would simplify and integrate the tangled web of care which the carer has to co-ordinate.

The second quality outcome, treating carers as true partners in care with professionals in any setting, includes creating a triangular flow of trust between patient, carer and professionals, be they consultants or care assistants. And that partnership should continue if a person enters a carehome or hospital. Too often carers are sidelined in assessments, careplans and hospital discharge, when they hold invaluable personal information about their relative or friend. This, among other carers’ issues, is taken up by the Care Act for the first time in legal history.

The third outcome is enabling the carer to have a life of their own outside caring. Regular breaks are essential and the speaker recounts how the community helped, something which can be stimulated further by Dementia-friendly Communities and Dementia Friends. She found replacement care at home worked better than respite care away from home.

When the caring stops, emotional support is required (fourth outcome) especially when a person enters a carehome, or when there is a delayed bereavement shock. More former carers would volunteer to support present carers if there were less red tape attached.

Finally, the Dementia Action Alliance’s “Carers Call to Action” has issued a 20-point checklist for Commissioners of ways of supporting carers of people with dementia and five goals for achieving good outcomes for carers which everyone present could help to achieve.

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Download: Barbara Pointon MBE Presentation

6 October 2014

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