How social workers can make personal budgets work for people with dementia

Uptake of personal budgets among people with dementia still lags behind most other client groups. Three in five people with dementia assessed as eligible for a care package were not even offered a personal budget, while 15% declined an offer of one, found a 2011 Alzheimer’s Society report, Getting Personal?.

The perceived risk of financial abuse; issues of capacity; lack of information and support for families and carers, and the fact that many people with dementia only access social care at crisis point – when setting up a personal budget is more complicated – have all been put forward as causes.

So what can be done? Here we look at ways of making the assessment, support planning and review stages of a personal budget work for people with dementia.

ASSESSMENT

The first hurdle is often the assessment paperwork itself, says one former older people’s social worker, who wished to remain anonymous. “The forms we were using weren’t fit for purpose. They very much focused on what someone couldn’t do and their physical care needs. So for someone with a mental health need it was difficult to fit the answer into the questions.”

Kelly Hicks, a social worker and consultant at Personalisation Plus, an independent company that provides brokerage to people with a personal budget, agrees “It’s as if after a certain age people just focus on basic care needs; there is a failure to look beyond that to the real social needs and to stimulate minds.”

Much of that is down to risk aversion, Hicks says. “There are fears when, say, someone has previously left a gas cooker on that they will do it again. But you can change to an electric oven with a safety switch.”

Often the difficulty lies with a lack of time for social workers to think more creatively about navigating their way around perceived problems like this, beyond the traditional menu of home carer or residential care. To be able to think of alternatives, the social worker needs to know the person, she says. “That’s what’s missing a lot from assessments. Look back at their history – were they a social, outgoing person and if they were they would probably still want to be.”

Assessment of capacity can be another stumbling block. There is a built-in assumption that someone with dementia lacks capacity; but the Mental Capacity Act 2005 makes clear that capacity must be assessed for specific decisions, says Hicks. They might not be able to manage the actual finances but they might be able to make other decisions, such as choosing their personal assistant.

“Capacity is not just about the one moment in time. I will go back several times to do an assessment around capacity if the decision doesn’t have to be made quickly.”

Assessment tips

• Be positive about personal budgets – stress how empowering they can be and that there is support available to help the person with dementia or whoever is managing the budget on their behalf.
  
• Don’t focus too heavily on the process and management of the personal budget at the start; instead, look at outcomes and how a personal budget may help the individual achieve them with more choice and control.
  
• Take time, speak clearly and slowly and don’t assume that someone can’t make decisions.
  
• Get to know the individual and find out what they were like before diagnosis. Depending on the stage of dementia, sometimes the assessment can be done through observing the person and watching their reaction to situations. Help families think through what the person would have wanted if they are not able to tell you.
  
• When assessing capacity consider the person’s understanding of personal budgets, including the actions required on their part; whether they understand the implications of taking one on or not; the help available to them, and the support needed to achieve their identified outcomes.

SUPPORT PLANNING

There isn’t a tradition of support planning with older people, which is a challenge for social workers, says Martin Routledge, operations manager at In Control, who is leading on Think Local Act Personal’s review on improving personal budgets for older people.

Routledge says this means that it is important for social workers to be able to draw on external sources of support planning, using their own skills where relevant, for instance to ensure that the support plan keeps the person healthy and safe. Routledge suggests local branches of organisations like the Alzheimer’s Society and Age UK expand their offer to include help with support planning.

“Social workers who are stretched for time need that local assistance and it would mean they could signpost clients to a trusted source.”

A good support plan includes evidencing decisions to manage risks. “Good social work is about understanding and managing risks,” says Hicks. “I see a lot of support plans for personal budgets which don’t include the nitty gritty of what the law requires us to do. [Social workers] need to evidence any risks and explain why options have been chosen. No social worker will be crucified for having good risk management in a support plan.

“Social workers need to make sure that everything is safeguarded, the social worker as well as the person with dementia.”

Support planning tips

• Make sure you have been trained specifically in personal budgets and how they can work for people with dementia – particularly if your local authority doesn’t have dementia-friendly resources, such as payroll systems for families employing personal assistants, as this will result in an even greater need of your support.
  
• Where possible, involve the person with dementia in their support plan because this leads to more positive outcomes.
  
• Understand how personal budgets can work in your area, make sure you are aware of services and support available in the marketplace so that you can ensure outcomes really match individuals’ wishes.
  
• Improve your support planning skills by buddying up with a social work colleague working with younger disabled adults who is experienced in support planning.
  
• Evidence decisions around managing risks, for example, positive risk-taking needs contingency planning, for example back-up cover when a carer or PA is sick or on holiday.

REVIEW

With the advent of personal budgets, the purpose of the review is to check whether the outcomes set out in the support plan have been achieved.

“Reviews should be used to see what can be learnt from the process so far and to see if any changes can be made to improve outcomes for individuals,” says Louise Lakey, policy manager at the Alzheimer’s Society.

“The level and frequency at which reviews should happen should be proportionate to the risk identified,” she adds. “Reviews should always include the person who uses services and, with their consent, interested parties.”

Hicks agrees: “It depends on the stage of dementia, but reviews may need to be brought closer together rather than having an annual one, particularly if someone has a rapidly declining illness or more risks becoming apparent.”

She feels strongly that the person with dementia needs to be included in the review “in whatever way possible”. “This could take the form of a photo diary to show what has been achieved.”

Review tips

• As dementia is a progressive condition, an annual review may not be enough, so make sure the length between reviews is appropriate to the individual’s condition and any associated risks.
  
• Include the person with dementia in the review process wherever possible. When communicating with someone with dementia use gestures and visual prompts; try to make only one point at a time and pay attention to their responses; use language and phrases that are familiar to them; and repeat and/or rephrase as necessary and ensure they have had enough time to process what has been said.
  
• As the dementia progresses, the individual may need more support. Don’t automatically think this means that a care home is the solution – particularly if this goes against the wishes of the individual or their family – continue to think creatively about how a higher personal budget can still provide the solution.
  
• Frequent reviews reassure all involved that they are being checked and monitored, rather than left to get on with it.

Resources

Getting Personal? Making personal budgets work for people with dementia, Alzheimer’s Society 

Personalisation and dementia: A practitioner’s guide to self-directed support for people living with dementia, Mental Health Foundation  

Improving personal budgets for older people, A review, first phase, Think Local Act Personal, Social Care Institute for Excellence

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