Direct payments, dementia and 'suitable persons'

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The term direct payments has become so familiar to those working in social care and those ‘in the know’ of how the system works that they roll off the tongue without a thought. Direct payments have been around since 1996 – now nearly 20 years.  As a result we often forget that the general public – many of them carers or becoming carers have never heard of a direct payment let alone understand what they are.

The take-up of direct payments amongst older people has lagged behind other groups and remains relatively low. This study by Laybourne and colleagues begins to explore some of the reasons why take-up is low and how practitioners could work to change the situation.

Experiences of social care practitioners and 'suitable people' were sought.

Experiences of social care practitioners and ‘suitable persons’ who manage direct payments were sought.

Method

The study explores the experiences of both social care practitioners working with individuals with dementia and those who act as ‘suitable people’ to manage the direct payment (referred to as an ‘indirect payment’) on behalf of someone with dementia. The data for the study was obtained by carrying out semi-structured interviews with these two groups of people.

The interviews with nine practitioners focussed on the discussions with new clients, strategies for imparting information, best interest decision making, capacity assessments, identification of a ‘suitable person’, support and reviewing and monitoring processes.

The interviews with seven ‘suitable people’ focussed on what led to the direct payment, becoming a suitable person, the support planning process, support received, the interaction with the local authority and the impact of the indirect payment on the recipient. All the suitable people stated that they were providing care to the person with dementia. This group included both family and non-family members, the majority were female and three of them were over the age of 65.

The information from the interviews was transcribed and analysed into various themes.

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Sometimes ‘suitable persons’ struggled with assessment processes and felt they didn’t have enough information.

Main findings

Indirect payments benefit this group in the same way as they benefit the wider older population. In other words they enabled the person with dementia to

  • remain in their own home
  • to receive care tailored to their needs and lifestyle choices
  • access their local community
  • maintain a flexible and dignified care routine.

Suitable people

From the perspective of the suitable persons, carers benefited from the support purchased via the indirect payment but at the same time struggled with the process around receiving the indirect payment.

The flexibility and control of arranging their own care packages had a positive knock-on effect for the carers – allowing the carers free time to pursue their own lifestyle choices. This had not been the case with directly provided services.

However, the suitable people (all of whom provided care) reported that managing the indirect payment was challenging. Two areas that led to specific difficulties were the assessment process and the information and knowledge of the practitioners. There was a lack of clarity about the purpose of various assessments; the practitioners limited understanding of dementia and its impact and it was felt that some practitioners were less then positive about what indirect payments could offer this group.

Practitioners

From the perspective of the practitioners they voiced their support for indirect payments but had some reservations. Practitioners voiced concerns about the choice of the suitable person and how that person would cope particularly as they became older.

Practitioners also often felt that the direct payments were not always spent on what they would see as the most appropriate types of care. Practitioners put this down to ‘low aspirations’ in comparison with other groups of direct payment recipients.

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Carers experienced some positive knock-on effects of arranging care packages and had free time to pursue their own activities.

Strengths and limitations

The main limitation of the study is its size. Whilst the researchers acknowledge that it is ‘the beginning’  of a journey to explore the experiences of this group, it does limit our ability to generalise from the findings to the wider population. However, the fact that the results are in line with other research findings and were not surprising must add strength to the reliability of the findings.

The study does confirm the knowledge which most people who work with this group probably already know. It also provides some rich qualitative information obtained from both the practitioners and suitable people which could be used to change practice.

Summary

The study supports other evidence that the outcome of direct and indirect payments can give this group options which enable them to remain at home and live a lifestyle of their choosing. In addition, by giving the choice and control to the individual and their carer the flexibility of the care package has positive outcomes for the carer.

However the two stumbling blocks evidenced in this research are firstly, the process and secondly the reservations of practitioners. Social care practice does need to change and the assessment process and information need to be made more understandable and simpler for the public. In addition, the research points to the fact that we still need to change hearts and minds of practitioners about the implications of giving control to clients to make their own choices and their own mistakes.

Personalisation is here to stay, and as a result direct payments are likely to be a viable way of delivering support for the foreseeable future. The study focuses on a group of individuals that is increasing in number each year yet the take up of direct and indirect payments is low.  It is therefore vital that we take note of research evidence – however small the study is – in order to gain knowledge about how to extend the option of direct and indirect payments to a group of people where take up is often low.

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If indirect payments are to work well processes, information and the reservations of practitioners need to be addressed.

Link

Laybourne, A.H, Jepson, M.J, Williamson, T, Robotham, D, Cyhlarova, E and Williams, V (2014) Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners. Dementia [Abstract]

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Jeanne Carlin

Jeanne started her social work career in child protection and then moved into children’s disability services. During the last 12 years of her employment she worked as a disability consultant doing training, research, writing and consulting. Her passion and commitment in this area comes from being a family carer to her daughter for 32 years. She also spent a number of years supporting her father, who had dementia and continues to support her mother who has chronic respiratory failure and now lives in residential care. In retirement Jeanne continues to be actively involved in research (Social Care Ethics Committee, School for Social Care Research) and a number of campaigning groups around personalisation.

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