LITTLE has changed in four decades of dementia care according to a new study carried out by experts in Warwickshire.
The national study was conducted by Tony Britton, the founder trustee of The Pam Britton Trust for Dementia in Warwickshire and Dr Martina Zimmermann, a Leamington resident and lecturer in Health Humanities and Health Sciences at King’s College London.
Their research, published in ‘Dementia’ – the international journal of social research and practice – found the experience for dementia carers had changed very little in the past four decades and remained hampered by policy.
The findings – based on analysis of policy documentation and social research – indicated ineffective co-ordination of services and disjointed care plans were to blame for the lack of improvement to the lives of dementia carers.
Also support for informal dementia care at a local community level was not working for most carers today due to an absence of support for the carer and of an effectively actioned care plan, backed up by sufficient resources.
And as a result, the research indicated the lived experience of dementia care continued to be dominated by feelings of isolation, exhaustion, and perceived lack of support – symptoms which had remained consistent across 40 years of analysis of the experience of dementia carers.
The study also found decades of policy-driven efforts to find a cure had eclipsed attention to care.
Dr Zimmermann said the prime minister’s Challenge on Dementia called for ‘high-quality relationship-based care and support for people with dementia’, but that only a small fraction of funding had been allocated to improving care.
She continued that despite many policy documents recognising the need for more concrete carer support, change remained incremental at best.
“At a macro-level, a deep culture shift is needed, one that sees the need for care as much as cure. Consequently, this would create a commitment to share finances more evenly between transformation of care and research into cure.
“Despite efforts made to reduce fragmentation of care, as formulated in policy papers across over a dozen years of papers analysed in the study, local implementation has not occurred.”
The study recommended a joined-up approach between health and social care, and that adequate information on available care support services should be made more accessible.
Mr Britton said: “The measures proposed would send a signal that people with dementia and their carers are fully appreciated by, and integrated in the local community.
“As long as care is fragmented and carers cannot swiftly access specific specialist services, the lived experience of dementia care will continue to be exhausting, frustrating and lonely.”