Supporting People with Dementia at Home

Challenges and Opportunities for the 21st Century

David Challis, Caroline Sutcliffe, Jane Hughes, Richard von Abendorff, Pamela Brown, John Chesterman

• Publisher: Routledge
• Year: 2016
• eBook ISBN:
  9781317048275
• Topic: Ciencias sociales
• Subtopic: Sociología

Supporting People with Dementia at Home details a groundbreaking study of an intensive care management scheme designed for older people with dementia that are at risk of entry into residential care. The authors use a quasi-experimental approach to compare how the individuals on the mental health team in one community were matched to a similar community without the service. They analyze the evidence focusing on the eventual placement of the individual suffering, the quality of care they receive, and also the needs of their carers. This book offers valuable evidence about the factors which can maximize the independence and well being of older people with dementia, from the perspective of older people and their carers. For those who commission services, it is highly relevant to service models for the National Dementia Strategy in England.

Chapter 1 Older People with Dementia: The Development of Community Care

DOI: 10.4324/9781315611358-1

Introduction

Providing integrated and co-ordinated community-based care for older people with dementia has gained prominence against a background of an ageing population and greater financial restraints in many countries. In the UK the number of people with dementia is growing rapidly, and is forecast to rise by 38 per cent between 2006 and 2021, with the greatest increase among those over 80 years of age (Knapp et al., 2007). Indeed, this age group, which is more likely to need nursing, residential or home care, is expected to increase from 2.6 million in 2004 to 5 million by 2031 (Government Actuary's Department, 2006). Moreover, the numbers of older people with cognitive impairment are projected to increase at a faster rate than those with functional disability alone (Melzer et al., 1997; Comas-Herrara et al., 2007).

Increasingly, government policies are focusing upon meeting the needs of frail older people in their own homes. However, a significant proportion of those requiring community care services are likely to be the very old and those with cognitive impairment (Melzer et al., 1999). Additionally, in view of a continual downward trend in care home provision (Department of Health, 2001a; 2002a; Social Services Inspectorate (SSI), 2003; National Statistics, 2007), a larger number of older people with dementia will require support in the community. Care management remains the mechanism for assessment and providing for needs, with an emphasis on a transparent process for the allocation of resources and increased flexibility in their provision (Committee of Public Accounts, 2008; Department of Health, 2008a; 2009a). For older people with complex needs including those with dementia it is likely that this care will continue to be co-ordinated by a care manager (Cm 6499, 2005; Cm 6737, 2006).

In the last two decades of the twentieth century there was increasing recognition of the importance of the contribution of carers to the care of vulnerable adults on a day-to-day basis (Cm 849, 1989; Cm 4169, 1998) and also in respect of older people with dementia (Levin et al., 1989; Myers and MacDonald, 1996). The White Papers Caring for People (Cm 849, 1989) and Modernising Social Services (Cm 4169, 1998) began to make explicit the crucial contribution of carers to the support of vulnerable adults. The latter allowed more potential for carers to exert influence over service provision, particularly with the extension of direct payments to this group of people (Department of Health, 2003a). However, despite this focus upon greater flexibility and choice for carers, it is apparent that, due partly to the rising age of the caring population, the availability of informal care may be outstripped by increases in the care needs of older people (Wanless, 2006; Pickard et al., 2007), leading to greater demand for formal care services.

The Lewisham Case Management Scheme (LCMS) described in detail in this book, was designed to provide an appropriate community-based approach to the long-term care of older people with a diagnosis of dementia, identified as having unmet needs and likely to be at risk of entry to a care home, despite input from statutory services. The scheme was located in an existing service setting, a specialist multidisciplinary community mental health team for older people. Its importance lies not only in being one of a family of care management projects designed to provide effective community-based long-term care for older people that spanned the health and social service divide (Challis and Davies, 1986; Challis et al., 1995; 2002a), but also because it was distinctive in its target population. Its subsequent evolution into mainstream service provision reflects its relevance to current developments in the care of older people with mental health problems. The research component of the scheme played an integral role in the management, planning, and ongoing development of the scheme, and therefore programme fidelity (Bond and McGrew, 1995; Teague et al., 1998) until it became a mainstream service within the multidisciplinary team. The research study compared individuals in one community mental health team for older people receiving case management, to those in a similar community mental health setting without a case management service. Older people were recruited to each arm of the study by applying similar referral criteria and were interviewed at uptake and again at six and twelve months, as were their carers. Service utilisation and cost information, which was collected on a comprehensive basis, was tracked through time over a twelve-month period.

The scheme at the heart of this book encompasses many of the principles and practices central to the programme of reforms embodied in the National Service Framework for Older People (NSFOP) (Department of Health, 2001b). It also demonstrates the importance of the link between specialist health care and social care in the care of older people with dementia (Philp and Appleby, 2005) and the personalisation of care with its emphasis on the flexible use of resources to meet assessed need (Department of Health, 2008a; 2009a). As a prelude to this description, the first two chapters of the book provide a historical review of the policy context in which care management arrangements have evolved together with the processes intrinsic to it and the organisational context in which it is undertaken. Thus, this chapter reviews a range of policy initiatives central to the evolution of community care, particularly in the context of the development of services for older people with dementia, and for their carers and provides an introduction to the book as a whole.

The Development of Community-based Services for Older People

Arrangements for the care of vulnerable older people, including those with mental health problems, have changed in many ways since the advent of the Welfare State in the late 1940s. However, there have been few developments specific to the needs of older people with mental health problems and particularly for those with dementia. The review of policy initiatives in the post war era detailed in Box 1.1 highlights this. Indeed many of the developments were not specific to older people but intended to benefit all vulnerable adults, particularly in the context of home-based care. However, early in this period there were three particularly relevant to the care of older people with dementia.

First, as described by Means and Smith (1998), most of the care that was provided by the state was institution based and of poor quality, and it was recognised that this state of affairs could not continue. In 1946, the Nuffield Provincial Hospitals Trust in The Hospital Surveys: The Domesday Book of the Hospital Services reported problems with the care of older people and poor conditions in public assistance institutions. The following year the Seebohm Rowntree Committee (1947) survey of old people's homes also described poor conditions in institutions housing over 1000 people, and recommended changes to both the structure and organisation of the establishments. More than a decade later it appeared that little had changed despite the creation of a health service that was free at the point of use and the requirement placed on local authorities to provide residential care to those in need irrespective of age. Townsend (1957; 1962) described the ‘warehousing’ of older people in former workhouses that had become residential care homes. Concurrently he reported the scarcity of support services for older people who were not placed in institutional care (Townsend, 1962). Robb (1967) detailed poor standards of care, including allegations of ill-treatment within hospital provision for elderly mentally infirm patients. However, it was almost a decade later that the extent to which older people with mental health problems were being admitted to and assessed in mental hospitals became clear. To counter this, the White Paper Better Services for the Mentally Ill (Cmnd 6233, 1975) recommended that their needs should be assessed at home or in out-patient clinics where possible.

This reflects the second theme relevant to the care of older people with dementia: the fragmented and uneven development of community-based services for vulnerable adults. Many community-based services for older people were provided by voluntary organisations until the 1970s and these were neither regular nor extensive in coverage. Whilst the first official mention of ‘community care’ has been attributed to the 1957 Report of the Royal Commission on Mental Illness and Mental Deficiency (Cmnd 169, 1957) which preceded the 1959 Mental Health Act, there was little evidence of its systematic development in respect of any user group between 1945 and the publication of the White Paper Growing Older in 1981 (Cmnd 8173, 1981). This advocated that older people should remain at home rather than be admitted to long-term care, and also emphasised that the principal role of the state was to meet basic care needs. However, it was not until 1977 that the provision of domiciliary (home) care, of which older people were the main beneficiaries, became mandatory. Moreover, whilst the reforms of the 1970s were designed to create a more co-ordinated approach to the provision of care at home for vulnerable adults, one of the consequences of the changes was that the division of responsibilities between providers of health and social care became more apparent.

Box 1.1 Community care: policy developments 1942–1996

Date	Policy initiative	Key points
1942	Inter-Departmental...

Table of contents

• Cover Page
• Half-title Page
• Series Page
• Title Page
• Copyright Page
• Table Of Contents
• List of Figures and Boxes
• List of Tables
• List of Abbreviations
• Foreword by Bleddyn Davies
• Acknowledgements
• 1 Older People with Dementia: The Development of Community Care
• 2 Care Management for Older People with Dementia
• 3 Service Setting
• 4 Research Methodology
• 5 Care and Support at Home for Older People and Their Carers
• 6 Service Development
• 7 The Experience of Older People
• 8 The Experience of Carers
• 9 The Cost of Care – Multiple Perspectives
• 10 Predictors of Costs – Individual Characteristics
• 11 Evaluation and Evolution
• Appendix 1 Interview Schedules: Domains of Enquiry
• Appendix 2 Services: Sources of Record of Receipt and Derivation of Price
• References
• Name Index
• Subject Index