Research into the use of direct payments by people with dementia

Research institute director Alison Petch reviews findings from Scotland on the use of direct payments by people with dementia

Authors: Lindsay Kinnaird and Kate Fearnley

Title: Let’s Get Personal – personalisation and dementia; Alzheimer Scotland, 2010, 64 pages

Aim: to investigate the experience of personalisation in the form of direct payments by people with dementia in Scotland.

Methodology: carers of people with dementia were interviewed about their experiences of direct payments, while local authorities were asked about implementation.

Conclusion: uptake of direct payments among people in this service user group is low and a “transformational” overhaul of systems and approaches is needed to change this.

Objectives

This research by Alzheimer Scotland was based on 12 case studies involving the use of direct payments by people with dementia, in which the carers were interviewed about their experiences. Representatives from 10 local authorities were interviewed about the use of direct payments with dementia sufferers and about the wider implementation of personalisation in their agency.

All 32 local authorities in Scotland were asked, using the Freedom of Information Act, for details of their direct payment rates, the circumstances under which they would be paid, and their eligibility criteria for community care services. Responses were received from 28 of the authorities.

Findings

Although the local authorities indicated that they promoted direct payments, uptake by people with dementia and their carers was low, with more than half of those presented in the case studies hearing about the option from informal sources such as family or friends. Direct payment rates varied widely across councils, the lowest payment being between £6.58 and £12.07 per hour and the highest between £11.42 and £22.50. Factors influencing the rates paid included the type of support required, higher rates for agency support than for personal assistants, and, in two of the 28 authorities, differential rates according to user group.

Flexibility was the key benefit of direct payments for people with dementia as highlighted by local authority interviewees.

They also cited:

● The opportunity for choice and control over how support is provided.

● Consistency in timing; the ability of family carers to respond to crisis situations.

● Supporting people at home rather than in residential units.

Several barriers were perceived by social work staff. These included:

● Issues of mental capacity and of there being someone to manage the budget.

● The responsibilities and requirements of managing a direct payment.

● The attitude of workers in presenting the options.

● Lack of awareness and promotion.

● Financial constraints and money tied up in existing services.

● Eligibility thresholds precluding earlier intervention.

● The time taken to set up a direct payment.

● Limited choice resulting from few providers, particularly in rural areas.

Recommendations

The authors of the report make recommendations designed to increase the uptake of direct payments by people with dementia and their carers. These include:

● Increasing awareness through publicity and the provision of impartial information.

● Improving understanding within social work departments.

● Streamlining systems and reducing bureaucracy, with a quicker process for putting in place a direct payment.

● Improving support and information and making reporting requirements more straightforward.

● Working with local authorities to ensure parity across different areas on the flexibility regarding the ways in which direct payments can be spent.

● Adapting legislation to allow an appropriate person to take on managing the direct payment when the person with dementia lacks capacity and there is no one with power of attorney or guardianship.

● Introducing a straightforward process for health money to be included in direct payments.

The report emphasises the need for transformational change if personalisation is to be the norm for people with dementia and their carers. The need for both health boards and local authorities to adopt a preventive approach and to provide early support is emphasised, together with the need to plan funding support across the duration of the illness.

Commentary

Personalisation is under-developed in Scotland compared with England; moreover its implementation has generally been through direct payments rather than other mechanisms. There have not been the mandatory targets of Putting People First nor the carrots of transformation grants.

Nonetheless there are similarities in the relative under-representation of individuals with dementia among those benefiting from a personalised approach. Moreover, across both Scotland and England there is a concern to address the challenges of the nations’ respective dementia strategies.

This research is therefore significant for both policy and practice in highlighting the potential of direct payments and some of the barriers that need to be overcome, and in exploring alternative models for personalisation. These include individual service funds and two pilot projects led by Alzheimer Scotland; Facing Dementia Together seeks to extend self-directed support in the immediate period post diagnosis, while a second project explores self-directed support as an alternative to institutional care. As with other aspects of the personalisation agenda, the challenge is to generate and support creative support solutions.

This study is, of course, primarily qualitative in approach, relying in particular on the use of a small number of case studies. This is inevitable given the stage of development; more detailed exploration will become possible as practice becomes more widespread. The value of the research lies in detailing for individuals with dementia key issues that inhibit or enable the development of direct payments in particular and of a personalised approach more generally.

However, a more continued research focus on dementia will be needed as the personalisation agenda evolves.

What are direct payments?

Direct payments are paid to people who have been assessed as having needs requiring support. They are paid to the individual in place of direct service provision so that the individual can determine how to meet these needs. Payments are made into a designated bank account – ie, separate from any other they may have. Direct payments were introduced by the Community Care (Direct Payments) Act 1996 – but there have been several modifications to eligibility since then.

Further Reading

● Alzheimer Scotland has also published Taking charge: a short guide to self-directed support for people with dementia and their carers

● Scotland’s National Dementia Strategy

● An equivalent national dementia strategy for England: Living Well with Dementia

Readers may also be interested in the Dementia Choices project, a two-year scheme managed by the Mental Health Foundation and focused on four pilot sites. It seeks to “explore, support and promote different forms of self-directed support, including direct payments, individual budgets and personal budgets for people living with dementia and their carers”. Further details available here

Practice implications

For practitioners:

● Many individuals with dementia and their families are unfamiliar with principles of personalisation and the ways in which individualised support may be accessed. Practitioners should maximise opportunities for people to hear about different self-directed care.

For managers:

● Local authorities have often been slow to embrace people with dementia within the personalisation agenda. This is despite, as demonstrated by the case studies outlined, provision through direct payments and other forms of self-directed support being particularly suited to meet ongoing and long-term support needs characteristic of this group.

For policy-makers:

● The mix of health and social care support required by people with dementia highlights the need for resource mechanisms which can successfully pool health and social care budgets. Strategies should be informed by the early lessons from the personal health budget pilots.

About the author: Alison Petch is director of the Institute for Research and Innovation in Social Services in Scotland

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