Deep-seated misconception of personal budgets and dementia is preventing local authorities from delivering person-centred care.
Alzheimer’s Society is calling on all local authorities in England to urgently break down the barriers preventing people with dementia accessing personal budgets.
Fewer than a third of people receiving social care support for problems with memory and cognition have a personal budget, despite the government’s aspirations for a person-centred care and support system. The Care Act gives everyone who is receiving support from social services the legal right to a personal budget, offering them greater choice and control over their care and support.
An Alzheimer’s Society audit of local authorities’ personal budgets processes has highlighted how the majority are falling at the first hurdle, with many failing to make people with dementia aware of their entitlement to a personal budget.
Alzheimer’s Society has produced a personal budgets guide
of easy and cost-effective actions councils can take to improve the personal budgets process for people with dementia and their carers. Today, the charity is urging all local authorities with adult social care responsibilities to sign the Dementia-Friendly Personal Budgets Charter to demonstrate their commitment.Commenting on the benefits of personal budgets for people with dementia, George McNamara, Head of Policy at Alzheimer’s Society, said:
'Personal budgets are essential to delivering person-centred care, giving people with dementia choice and control over the care and support they receive.
'People with dementia and their families tell us of the very real impact personal budgets have had on their lives – from the 85-year old woman who returned home after being left alone in her care home room each day with no way of communicating, to the husband and wife who are now able to go dancing in Blackpool dancehall each week.'
Despite clear benefits, comparatively few people with dementia have a personal budget and face significant barriers when trying to access them. In 2015-16, a person receiving support for memory and cognition problems was almost half as likely to have a personal budget as someone receiving physical support, and over a third less likely than a person with learning disabilities. Of the 16,060 people with a personal budget for memory and cognition support, just 19% managed this for themselves with a direct payment, the rest were managed by their local authority.*
To understand this inequality, Alzheimer’s Society conducted a mystery shopping evaluation of 60 local authorities with adult social services responsibilities in England. The investigation uncovered a worrying lack of information and support – nearly two thirds of local authorities failed to provide information relevant to people with dementia. In some instances, local authority staff actively discouraged use of personal budgets for people with dementia.**
Alzheimer’s Society’s Dementia Friendly Personal Budgets Charter enables local authorities to demonstrate their commitment to people with dementia. Pledges include:
- Producing relevant and clear information on personal budgets for people with dementia that always explain all the available options and methods for receiving a personal budget
- Training all staff involved in care and support planning in the personalisation agenda to ensure accurate and appropriate information is provided at all times
- Having a timely and transparent assessment process that clearly explains how they have decided on the amount of money a person will receive
- Collecting robust data on the uptake and outcomes of personal budgets for people with dementia so that services are continuously improved
'This deep-seated misunderstanding – that personal budgets aren’t appropriate for people with dementia – is preventing local authorities from truly delivering person-centred care. Of the few people with dementia who have a personal budget, fewer still receive direct payments – the vast majority have their payments managed by their local authority, meaning their choice of care provider is limited to those on an approved list.
'We need a sea change in the way local authorities provide personal budgets for people with dementia, from providing clear and accessible information to training staff to better understand how person budgets can work for people with dementia. 'Alzheimer’s Society’s guide provides easy and cost-effective ways to break down the barriers preventing people with dementia accessing personal budgets. Today, we’re urging all local authorities to demonstrate their commitment to making personal budgets dementia-friendly by signing the charter.'
Case study: Nottinghamshire County Council
Nottinghamshire County Council worked with the Alzheimer’s Society to improve how personal budgets and direct payments work for people with dementia and their carers.
A key priority was improving access to good quality information and advice about personal budgets and raising awareness of the support available through frontline staff and partner organisations. In particular, the Council worked with residents with dementia and their carers to identify and overcome barriers that prevented them from accessing personal budgets and direct payments. An easy to understand leaflet was also produced to explain their benefits and how they work.
The project, which ran from 2013-14, doubled the number of people with dementia receiving direct payments from 143 to 295.
Councillor Muriel Weisz, Chair of Nottinghamshire County Council’s Adult Social Care and Health Committee, said:
'The use of personal budgets and direct payments for people with dementia had been recognised as a particular challenge for local authorities.
'However, this project has shown that personal budgets can work well to divert and delay admission into long-term care, deliver good outcomes for people with dementia and are cost effective when combined with support from carers.'