Let's get personal - personalisation and dementia
Our research demonstrates that, when empowered to direct their own support, families effectively combine state resources around their own natural supports – creating truly personalised support. However, at present very few people have genuine choice and control over the support they receive.
This report identifies the barriers that limit the wider implementation of personalisation and provides key recommendations that will enable the majority of people with dementia and their carers to personalise their care and support so that it is meaningful to their lives.
The study has identified a number of improvements to policy and practice that might increase the up-take of direct payments by people with dementia and their carers:
- Increase potential recipients' awareness through publicity and impartial information, so that people with dementia and their carers are aware of what is involved in taking on a direct payment ahead of an assessment of their needs.
- Improve understanding within social work departments towards direct payments and their potential benefit for people with dementia.
- Streamline systems, with reduced bureaucracy and a quicker process of putting a direct payment in place.
- Improve support and information and make reporting requirements more straightforward for the direct payment recipient.
- Work with local authorities to ensure parity in the operation of direct payments, so that recipients in different areas have equal flexibility and choice over how and when they spend their direct payment, providing it is meeting their assessed needs.
- Adapt legislation to allow an appropriate person to take on managing the direct payment on behalf of a person with dementia, when the person lacks capacity and there is no one with power of attorney or guardianship.
- Introduce a straightforward process for health money to be included in direct payments in recognition that the needs of people with dementia do not fit neatly into social work or health board defined parameters.
There is a need for transformational change in order to scale-up personalisation so that the majority of people with dementia and their carers can have genuine control over their support:
- Local authorities should use an outcomes based approach when assessing the support needs of people with dementia. The focus should be on the impact or end result of support and/or services on the person with dementia and their carers life. People with dementia and their carers should also be supported to take an active role in assessing their own need for support.
- Social work resources should be structured so as to facilitate individualised funding, with a fair and equitable budget to allow support to be designed around the person with dementia and their family, and a variety of options for managing the social care money to suit individual circumstances.
- Health boards and local authorities should ensure the provision of good early stage support and a preventative approach to supporting people with dementia and their carers.
- The Scottish Government should establish a change fund to enable the development of post diagnostic support planning, with a flexible budget to help people to maintain their natural supports from an early stage and an indicative budget for future care planning to follow the person as their needs progress.
- Local authorities should develop a preventative and planned approach to funding support for people with dementia and their carers throughout the journey of the illness, taking a long term view on the cost of care. There should be a focus on value for money and the best outcome with the removal of restrictive cost ceilings and an unlocking of resources to facilitate the creation of a range of options open to families as the needs of the person with dementia progress.
- Personalisation has rapidly become a prominent feature of social policy discussions.
- Personalisation provides choice and control to the social care user, with services that orientate around their lives; it can be considered a right of citizenship. It is not just about what services can do, but about ensuring that services work with the natural support provided by people’s friends and family and with wider community resources.
- However, personalisation is not widely practiced; very few people with dementia and their carers in Scotland have genuine control over the support they receive.
- Direct payments have been the main approach to personalisation in Scotland. Alzheimer Scotland has undertaken an in-depth study into how direct payments are working in practice for people with dementia and their carers.
- This report sets out the results of the study. It also looks at alternative approaches to personalisation of adult social care within the UK.
- Dementia is a key health issue facing the nation over the coming decades. As our population ages, the number of people with dementia in Scotland is set to double over the next 25 years.
- The response to current demand by many local authorities has been to restrict those qualifying for support through tightening eligibility criteria.
- The Changing Lives report highlighted the unsustainability of the current social care system and the need to change in response to increased demand, greater complexity of needs and those using services having little say over how they are delivered.
- Growing dissatisfaction has been expressed, particularly by working age disabled people, about the inflexibility and unreliability of directly-provided social care services, which create dependency rather than promote independence and impede the enjoyment of full citizenship.
About the study
- A literature review provided the context for the research, an understanding of existing evidence and policy development to date.
- 12 carers of people with dementia were interviewed to provide an in-depth appreciation of their experience of using a direct payment.
- Interviews were carried out with social work staff in 10 Scottish local authorities who had an understanding of both strategic and operational issues in relation to the provision of direct payments for people with dementia.
- A freedom of information questionnaire was sent to all Scottish local authorities to find out their direct payment rate/s and the circumstances in which these would be paid to recipients. As personalisation is associated with early intervention and prevention, the questionnaire also asked for the authority’s current operational eligibility criteria for community care services.
- There is a move towards greater personalisation in the majority of local authorities participating in the research, although policy development was at an early stage and direct payments remained the main approach to individualised funding.
- Scottish local authorities have a wide range of different direct payment rates and use different criteria to determine what level is paid to each recipient.
- Although direct payments were promoted by the local authorities taking part in the research, uptake by people with dementia and their carers was low. More than half of the 12 case study participants found out about direct payments through informal means, such as family and friends.
- National statistics show that the number of direct payment recipients for a person with dementia can be no greater than 600 across Scotland; however, the actual number is likely to be much smaller as the national figures will include other care groups. If actual take-up across Scotland mirrors that of the 10 local authorities participating in the research then there would be approximately 300 direct payments for people with dementia.
- There are many parallels between the benefits of direct payments as highlighted by the social work interviews and the experience of the 12 case study participants including:
- flexibility, choice, control and consistency over when support is provided and by whom
- providing appropriate responses to the particular needs of people with dementia
- helping to keep the person with dementia at home in the advanced stages of the illness.
- The study has highlighted a number of barriers that limit the wide scale implementation of direct payments for people with dementia and their carers including:
- the need to have someone willing to take on the responsibilities and requirements that go along with holding a direct payment
- eligibility thresholds often result in people with dementia qualifying for support only when their condition has deteriorated, limiting the opportunity to arrange support in a planned way
- the time taken to set-up a direct payment can be prohibitive, given that dementia is a degenerative condition with care needs increasing over time.
- There is a wide range of approaches to providing the service user and their family choice and control over the support they receive. They can enable people with dementia and their carers, unwilling or unable to take on the management of a direct payment, the opportunity to personalise their support. They also offer practical examples and shared experience for Scottish local authorities in their development of personalisation.
- Alzheimer Scotland is committed to promoting the personalisation of services for people with dementia and working to make sure its own services are fully flexible and operating in a way which gives control to service users and their carers and families.
Conclusion and RecommendationsSee above
- Contact name
- Lindsay Kinnaird
- 0131 243 1453