Making personal budgets dementia friendly

A sea change is needed among local authorities to make personal budgets dementia friendly, argues George McNamara of the Alzheimer’s Society

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 each week.

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. Unfortunately, personal budget uptake among people with dementia remains comparatively low, despite the government’s aspirations for a person-centred care and support system. Less than a third of people receiving social care support for problems with memory and cognition have a personal budget.

Personal budgets hold great potential for people with dementia and their carers. In the National Dementia Declaration, people with dementia and their carers describe what they feel is most important to their quality of life. These outcomes include “I have the knowledge and know-how to get what I need”, “I know that services are designed around me and my needs”, and “I have personal choice and control or influence over decisions about me”.

Unfortunately, many people with dementia are unaware that a personal budget is an option for them; many are hit with a brick wall of confusing or discouraging advice and a lack of clear information. Frequently, it’s the dogged determination of a carer or loved one that results in them getting a personal budget in place.

Case Study: Nottinghamshire County Council

In 2014, Nottinghamshire County Council Adult Social Care and Health (ASCH) felt this was a particular problem that needed addressing. With support from Alzheimer’s Society, Nottinghamshire ASCH showed that with a personal budget people with dementia and other health conditions can commission the right support to assist them with living in the community for longer, at comparable or less cost than residential care. Working in partnership with Alzheimer’s Society, the project focused on 3 key areas:

  • Improving access to high quality information on personal budgets and direct payments;
  • Raising awareness of dementia and dementia support services among key operational staff;
  • Accurately recording performance data on people with dementia.

Together, we consulted over 60 people with dementia and their carers at an Alzheimer’s Society Dementia Café to discover what information they want and need, and how they want to access it. Following this, they worked on focus groups of people affected by dementia to develop a dedicated information leaflet. The project also created links between social work teams and Alzheimer’s Society Dementia Support Workers to help ensure people affected by dementia had access to quality information and advice on all personal budget options.

Personal budgets put people with dementia at the centre of their care and, likewise, they should be at the centre of improving personal budget processes. Involving people affected by dementia when reviewing your processes and information can make sure that it’s accessible and right for them – little details such as using a suitable font and dementia-friendly language.

Many local authorities in England report very low numbers of people with dementia receiving a personal budget or direct payment. Nottinghamshire ASCH found that many service users who are classified as “physical frailty/older people” are not reclassified when they begin to need support for memory and cognition, or are diagnosed with dementia. As a result, they were unable to properly plan and monitor services. These simple steps, combined with a real focus on dementia, resulted in a doubling of the numbers of people with memory and cognition needs receiving a direct payment in just a single year.

Making personal budgets dementia friendly not impossible

To support local authorities to better meet the needs of people with dementia, Alzheimer’s Society has produced the Dementia Friendly Personal Budgets Charter, along with a guide of easy and cost-effective actions councils can take. The Personal Choice Network provides on-going support to local authorities that have signed the Charter. Through the Network, they have access to knowledge, skills, and materials from Alzheimer’s Society and specialist partners such as Think Local Act Personal, In Control and Helen Sanderson Associates.

To be able to consistently implement direct payments for people with dementia and offer truly personalised care, we need to find ways to improve communication and awareness of personal budgets, make the process more dementia-friendly and raise expectations of people’s right to have choice and control over their lives. We need a sea change in the way local authorities provide personal budgets for people with dementia, but that’s not impossible. Working with local authorities, we can and will provide care and support that puts people with dementia in control.

George McNamara

Head of Policy and Public Affairs

Alzheimer’s Society

@alzheimerssoc

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