Alzheimer's Society's view on personalisation
What we think about personalisation in care and how it relates to the needs of people affected by dementia.
Update 31 July 2020
Please note, the following content may not reflect the current situation and will be taken under review in the coming months.
What is personalisation?
Personalisation is intended to transform social care by putting people at the centre of their own care so that they have independence, choice and control over the services they use. Alzheimer's Society supports the stated aims of the personalisation agenda.
Personal budgets are an important approach to delivering personalisation and have clear benefits for people with dementia and carers (Alzheimer’s, 2011). Personal budgets can take the form of a managed option, which means a council or third-party handles budget management, or a direct payment with which an individual pays for care services that they have been assessed as needing. The Care Act (2014) also encourages Local Authorities to arrange Individual Service Funds (ISF). These allow a budget holder to nominate a chosen provider to hold his or her personal budget.
Alzheimer’s Society welcomes the government’s support for personal budgets for care and support and the extension of personal budgets in the NHS. In cases where a personal budget is not suitable, people with dementia and carers should be given choice and control over services based on the principles of the Mental Capacity Act.
In order to increase the number of people with dementia who benefit from personal budgets, the current system must be reformed to make it more suitable, supportive and understanding of the needs of people with dementia.
Alzheimer's Society is calling for
- All people with dementia in England to have a personal budget that is appropriate for them. There are clear benefits to people with dementia and carers using direct payments (Alzheimer's Society, 2011). However, the number of older people with dementia with a direct payment is unacceptably low. Local authority data shows that ten or fewer older people with dementia have a direct payment in 70 councils (NASCIS, 2014). To raise this level, barriers to uptake must be removed, more people must be offered the option and good information must be available.
- Extension of personal budgets across the NHS and pooling with health and social care budgets. The Department of Health undertook a successful pilot of personal health budgets between 2009 and 2012. Alzheimer’s Society supports the roll-out of personal budgets across the NHS. People with dementia receiving NHS continuing care have a right to have a personal health budget. CCGs can also offer a personal health budget to people with a long-term condition who may benefit. Alzheimer's Society will work to ensure that CCGs and GPs support people with dementia to benefit from these reforms and, as suggested by the Health and Social Care Act, the combination of monies from health and social care into a single personal budget.
- Market development. The range of services available for people with dementia must be improved, particularly of early intervention and prevention services and specialist support for people in their own homes. To stimulate the market, commissioners should be encouraged to use resources already being spent across health and social care on dementia more effectively to provide quality, appropriate care and expand approved provider lists. In England, Alzheimer’s Society will campaign for the Health and Social Care Act to include best practice guidance that will expand choice.
- Improved information. People with dementia and carers must be provided with information about the personal budget options available to help them to access and use personal budgets and direct payments at an early stage.
- Improved support and streamlined systems. Systems and processes must be streamlined so that accessing personal budgets, and direct payments in particular, is straightforward for people with dementia. Alzheimer’s Society will also campaign for commissioners to provide, and adequately fund, brokerage services which have been shown to help older people access personal budgets (Age UK, 2010).
- Adequate funding. Adequate funding is essential to ensuring that personal budgets allow a person with dementia to pay for the care and support they need. In England, Alzheimer’s Society is concerned that the Health and Social Care Act will set personal budgets at the local authority care home rate, which is often not enough to pay for dementia services. Alzheimer’s Society is also concerned that the Health and Social Care Act will continue the abuse of top-up payments to make up the difference between the cost of care and support and a person with dementia’s personal budget.
- The development of clearer evidence on personal budgets and dementia. Pilot sites to evaluate effective models of provision for people with dementia and their carers must be conducted. Accurate data on the current use of personal budgets, including direct payments, by people with dementia and their carers is also vital. Local authorities should be asked to collect specific data on the numbers of people with complex conditions including dementia using personal budget options.
- Full inclusion of people with dementia. Attitudes of health and social care professionals are a barrier to personal budgets for people with dementia, in particular direct payments. It is vital that the understanding and knowledge of professionals regarding the inclusion of people with dementia and carers in the personal budgets system is improved. In England, Alzheimer’s Society welcomes the Health and Social Act’s stated preference for direct payments and will campaign for provisions that will encourage local authorities to improve practice in this area to be strengthened.
Further information and references
- Alzheimer's Society (2014) Care Act 2014 regulations and guidance consultation response: care and support planning, personal budgets and direct payments
- Alzheimer's Society (2014) Personal Budgets (fact sheet). London.
- Think Local Act Personal (2013) Making it Real for People with Dementia
- Think Local Act Personal and Social Care Institute for Excellence (2013) Improving Personal Budgets for Older People
- Alzheimer's Society (2011) Getting personal? Making personal budgets work for people with dementia. London.
- Audit Commission (2010) Financial management aspects of personal budgets. London.
- NASCIS (2014) Local authority RAP return data 2013-14
- Mental Health Foundation Dementia Choices project
- Social Care Institute for Excellence (2010) Personalisation: a rough guide (revised edition). SCIE: London.
Last updated: November 2014 by Laurence Thraves