Improving domiciliary care for people with dementia: a provider perspective

The South West Dementia Partnership has commissioned the United Kingdom Homecare Association to research and deliver the findings of this important report ‘Improving domiciliary care for people with dementia: a provider perspective’.

Home care providers from a variety of backgrounds and geographical locations across the South West had input into the research. This was complimented by organisations and key people with knowledge and experience in the field of dementia from other parts of England.

With the future of health and social care under the microscope, this opportunity to look at how home care can rise to the challenge of providing person-centred care and support for people with dementia and their families, could not have come at a more critical time.

The project has been designed to show how providers are meeting the challenge of supporting people with dementia and their carers, and how they can deliver person-centred care and support in the future.

The experiences and aspirations of providers and care workers shared in this research are crucial in helping to tackle the difficulties that exist today and implement the changes needed to enable home care to meet the challenges ahead.

The aim of the project has been to identify:

• The challenges homecare providers face;
• What is working well from the homecare providers perspective and across all sectors of care;
• Initiatives, best practice and models that can set the benchmark for future care and support;
• How we can move things forward to improve and develop future dementia services.

Research methodology
Members of the UKHCA in the South West and the rest of England were invited to take part in the research through an email survey, focus group or telephone interview.

Key organisations and individuals with knowledge and experience of dementia care – not connected to the UKHCA but interested in participating in development work – were also invited to take part.

E mail survey participants were asked 44 questions focusing on:

• A person’s journey with dementia and the help and support delivered by home care;
• Models and types of care and support;
• Organisational arrangements;
• Workforce development;
• The cost of delivering care and support;
• Links with other community networks and services;
• Support for family and other informal carers;
• What providers need from commissioners.

Focus groups were held in Bristol on May 10, 2011 and in Exeter on May 11, 2011. The theme for these groups was: What would a good, flexible and responsive person-centred dementia care service look like?

Reference points for discussions in the focus groups were:

• At what stage on the person’s journey with dementia do home care providers engage with and provide a service and support;
• What models of care are working? Where are the challenges? What elements are required to provide a flexible, responsive person-centred service? How can home care develop its workforce to meet future needs?

The telephone interviews were designed to gather information on:

• Current dementia care and support delivered in the community;
• Models of care and support and organisational arrangements;
• Pilot or new care and support projects;
• Case studies and best practice.

Response
Seven completed email surveys were received, 18 people attended focus groups and 10 contributed via telephone interviews. Survey returns were considered low. However, the research covered two significant groups, generic home care providers and services specifically focussed on dementia. In broad terms it was felt the providers who responded, represented a range of geographical locations, and offered in-depth responses that appeared to reflect the wider, generally accepted, homecare provider perspective on the challenges and the developments needed to take dementia care services forward.

Context
Home care is facing its greatest ever challenges in an era of change, uncertainty – and opportunity. It features highly in plans for the transformation of social care – from playing an increasingly important role in caring for and supporting people with dementia to being pivotal in turning the aspirations of personalisation into reality.

The expected steep rise in the number of people with dementia over the next decade presents the biggest health and social care challenge of the 21st century.

Added to this are providers who feel under immense pressure to provide more responsive flexible person centred care, whilst being asked to work with local authorities who are operating within a programme of austerity cutbacks and budget reductions. This combination is having a wide range of effects that impact on workforce recruitment, training, service development and employment costs.

Services are being affected by rising fuel costs adding to the pressures to provide support for people with dementia, who may live in more rural or isolated areas, and there is concern about the reliance on family members and ‘informal carers’ who are being asked to provide more care and support.

Providing person-centred care and support for the increasing number of people with dementia is a daunting prospect for home care providers, and has raised many concerns about the resource levels and whether personalisation is actually working in terms of providing people with the ability to have real choice and control over the care and support they receive.

There is also growing concern about the prospect of working with a greater number of individual budget holders rather than one client (i.e. a local authority) which may present significant changes to administration and management structures for many generic home care providers.

However, the predicted increase in dementia offers all home care providers the opportunity for real change in the way care and support is delivered from early intervention to palliative and end of life care.