People with dementia missing out on direct payments

Published 17 November 2011

More than three quarters of people with dementia who receive social care support at home are not using direct payments or other personal budgets.

This is despite government plans to roll them out to all people using social care services. As it launches its new report 'Getting personal? Making personal budgets work for people with dementia', Alzheimer's Society is calling for the personal budget system to be adapted to meet the specific needs of people with dementia.

Around 300,000 people with dementia living in the community are currently in receipt of social care services for help with things such as eating meals, washing or going to the toilet. Yet less than 40 per cent have been offered a direct payment or other personal budget. Fifteen per cent of those offered them turned them down. The report is based on a survey of 1,432 people with dementia and carers living in the community.

A personal budget is the pot of money a council has allocated to meet the needs of a person eligible for publicly funded social care. When it is given as a payment to the person needing care it is known as a direct payment. Alternatively it can be managed by a third party such as the council. The government wants everyone receiving social care to be offered a personal budget by 2013, ideally in the form of a direct payment.

'Getting Personal?' suggests that personal budgets, specifically direct payments can bring real benefits for people with dementia and their carers, with those using them found to be more likely to be satisfied with the services they received. It also enabled the user to purchase services such as support with cleaning, gardening and for holidays which they may otherwise not have been able to afford.

However, the report also identified a number of barriers for people accessing direct payments or other forms of personal budget. These included:

  • A personal budgets system that is currently overly complex and intimidating for people with dementia and carers
  • A lack of information and support for people who might take them up
  • Low understanding of dementia among professionals and low awareness about the need to offer personal budgets
  • Local markets that are not fully developed to deliver a range of dementia services meaning it is difficult to create a personalised package
  • Strict criteria which means many people with dementia are not eligible for social care services until crisis point, by which point personal budgets may no longer be an option

Jeremy Hughes, chief executive of Alzheimer's Society, and chair of the personalisation workstream ahead of the social care white paper, said:

'Personal budgets can put people with dementia in the driving seat of their care, yet moves to roll them out are still in first gear. If we are to pick up the pace we must make sure the support and information is there and that they really are helping to provide personalised care.

'It is also imperative that this is not used as a smoke screen for cuts to social care funding.  Personal budgets can increase choice and control but they are not a fix-all for a broken system. We can't miss the opportunity provided by the social care white paper to create a system that provides high quality care at a fair cost to all.'

Mary Stevenson, whose husband John has dementia and who used direct payments for two years before John moved into a care home, said:

'Direct payments allowed us to really tailor John's care to meet his needs. They gave us freedom and control that we hadn't had before. The only problem was it took us so long to find out about them meaning there were a number of years where we missed out.

'I think if more people knew about direct payments and knew they would be supported with accessing them and managing them then more people would take them up. They might not be right for everyone but people need to have the choice.'

Download and read the report

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