Lack of support for dementia carers

A new report by Carers Trust, the largest charity for carers, has found that carers of people with dementia are not getting the support and advice they often desperately need.

Carers Trustis calling on GPs, social workers, community support nurses and all health and social care professionals to identify carers of people with dementia and to plan for and support them and their families at critical points in the caring journey. The three critical points that will arise for the majority of carers are – diagnosis, taking on an ‘active’ caring role and the decline of the person with dementia’s capacity.

Clinical Commissioning Groups and Local authorities need to plan and commission services that will improve support for carers of people with dementia as part of meeting the Government’s objectives to urgently improve dementia care.

The report ‘ A Road Less Rocky – Supporting People with Dementia’ found that access to the right information, advice and support can make a significant difference to carers and to the person with dementia at the critical points in the caring journey.

However, the report found that only 51% of carers questioned said that they were given an opportunity to talk separately about their needs and how much care they felt able to provide. 56% of carers questioned said that they had not received information about managing the medication of those they cared for. Many carers questioned said that they found they were caring for someone without basic information; often waiting long periods for diagnosis or coping without support at times of significant stress as the condition of their loved one declined.

There are 800, 000 people with dementia in the UK and an estimated 670,000 family and friends acting as primary carers to someone with dementia. The majority of people with dementia are cared for at home by a relative or friend and 42% of the UK population, know someone in their family or friend with dementia.

Demographic change means that the proportion of people with dementia will continue to rise. The average age of (unpaid) family carers is between 60 and 65 years, and the population of over 65s is projected to grow by 50% over the next twenty years. Dementia already costs the UK economy £23 billion per year; this is expected to grow to £27 billion by 2018.

The Government has recognised the urgency for improving dementia care and the Prime Minister’s Challenge on Dementia, launched in 2012 focusses on driving improvements in practice and research. Despite this, the needs of carers of people with dementia have been overlooked and Carers Trustresearch shows that improvements in practice are desperately needed.

Carers save the economy £119 billion a year and properly identifying and supporting carers will prevent escalation of demand on statutory services. The growing scale and cost of supporting people with dementia means it is critical that supporting family carers is at the heart of developing policy and practice to respond to growing levels of need.