The Essential Dementia Care Handbook

A Good Practice Guide

Fiona Goudie

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351702720
• Edition: 1
• Topic: Bildung
• Subtopic: Bildung Allgemein

Replacing the successful "Working with Dementia", this edition draws together many new ideas and practical approaches from a wide variety of professionals working at the leading edge of the provision of services to people with dementia and provides a comprehensive account of current best practice. Beginning with the diagnosis of dementia and other problems associated with aging, this book considers assessment, the person centered model of dementia, rehabilitation and therapy. It outlines practical interventions, illustrated with case studies that provide a stimulating insight into contemporary understanding and practice. Nursing staff, occupational therapists, residential care workers, social workers and all those in day-to-day contact with elderly people will be inspired by this vital handbook for all care staff.

Part 1
Setting the Scene

Chapter 1
Attitudes to Dementia: A Decade of Change

Fiona Goudie

IN THE DECADE SINCE WORKING WITH DEMENTIA was published, there have been dramatic changes in public and professional attitudes to dementia and its treatment. Media attention has increased, aided by the ‘coming out’ of public figures such as the former US President Ronald Reagan and the author Iris Murdoch. A number of autobiographies and biographies have been published on the experience of Alzheimer’s disease from the perspective of people with dementia (such as Robert Davis’ account My Journey into Alzheimer’s Disease) and their families (see, for example, Michael Ignatieff’s Scar Tissue, Linda Grant’s Remind Me Who I Am Again, and John Bailey’s Iris – A Memoir). There is now a dedicated periodical – Journal of Dementia Care – an academic journal – Dementia – and the Alzheimer’s Society has a national profile and an annual awareness week. The resulting improvements in public awareness mean that fewer people are likely to accept symptoms of dementia as part of the normal ageing process.

Attitudes to ageing are also changing as more people remain physically and mentally active into their late seventies and eighties, and expect healthcare to enable them to live high quality lives. There has been a rise in the number of centenarians in the UK, and in 1997 Jeanne Calment, aged 122 years, died in France of natural causes, having escaped cancer, cardiovascular disease and dementia. She lived independently until the age of 110. More medical and psychosocial research is being conducted into the effects of ageing. There are also dementia service development centres throughout the UK. Work in health-and social care with older people and people with dementia is now more likely to be seen as a positive career move than it was a decade ago.

Specific medical developments have taken place in the diagnosis and treatment of dementia, and new drugs are now available for the treatment of Alzheimer’s disease. There is a need for a clear diagnosis before treatment can commence, and specialist memory clinics for early recognition of symptoms and diagnosis are becoming widely established. The emotional consequence of giving a diagnosis to people with dementia has presented a new challenge to many in the field of dementia care. Traditionally, carers may have been informed, but not people with dementia themselves. Research in other areas such as cancer, HIV/AIDS and among people with dementia has demonstrated the importance of considering the impact of diagnosis on the potential sufferer as well as their carers.

Practice developments in areas such as learning disability and neurological rehabilitation have generated interest. Advocacy for people with dementia to speak for themselves rather than have carers speak for them is a new development within dementia services, but it has a longer history in the learning disabilities field. So, too, has the right to a sexual identity. For the majority of people with dementia, issues of sexual expression will not be discussed unless public displays take place. Then medication becomes the most likely treatment option – to reduce the frequency of so-called sexual disinhibition, thus solving the problem for carers and other service users, but not necessarily for the person with dementia. In the field of neurological rehabilitation there has been an expansion in cognitive assessment and retraining strategies for people following stroke or head injury. Computer technology is increasingly used for assessment and rehabilitation programmes, addressing visuospatial and information-processing problems, as well as being used by people with communication difficulties. There have been some developments in computer-aided assessment for people with dementia, but so far only a few applications in treatment programmes such as computer-aided reality orientation or reminiscence packages.

There is a growing interest in the use of networked technology (the integration of cable technology, communications and information technology) to provide intelligent housing for the general population. A house could be designed with sensors enabling detection of open doors or windows; movements around the house (at night, for instance), or absence of movement by a certain time in the morning; overflow of bath or sink taps, and self-monitoring and adjustment of temperature control. This could mean more options for people with dementia to stay in their own home or to live in a sheltered community with such technology instead of moving to a residential or nursing home.

There has been an expansion in the use of conventional counselling and psychotherapy for people with dementia, in addition to specially developed approaches such as reminiscence, validation and resolution therapies. This has gone hand-in-hand with the change in emphasis to a person-centred approach and a ‘new culture of dementia care’ (Kitwood, 1997), and has not been restricted to people in the early stages of illness. Examples include individual counselling (Terry, 1997), cognitive-behaviour therapy (Teri & Gallagher Thompson, 1991), group therapy (Yale, 1995), and the use of stories in reminiscence (Cheston, 1996).

The centrality of carers and the importance of their needs has been formally acknowledged (Carers’ [Recognition and Services] Act, 1995). Work with carers – the bedrock of service provision – continues to develop. More detailed work now exists on the nature of carer strain (Nolan, Grant & Keady, 1996), and on designing intervention programmes to provide the right sort of support when it is most needed. This is an area where research has identified that intervention can make a considerable impact on reducing carer distress and improving coping strategies.

The Law Commission (1995) has produced guidelines on decision-making for adults where mental capacity is impaired. These present a challenge to the usual practice in dementia care where decisions are taken by carers in the ‘best interests’ of the individual. Law Commission guidelines suggest that if an individual is unable currently to make their own decision, the principle of substituted judgement should be applied.

This involves making a decision based on what the person would want to do if they were able to speak up, and involves reviewing previous behaviour. It also involves the notion of ‘the least restrictive alternative’. For example, a person may be able to make a decision about where they should live because they have the capacity to understand the options and implications, but not be able to manage their finances because of memory and calculation difficulties. Thus others may need to be involved in helping with finance, but not decisions about living circumstances. There are implications for assessment and care here – some have already been tested in the legal system – including the provision of locked wards, enduring power of attorney, and living wills.

Table 1.1 summarises some of the positive developments influencing good practice in dementia care.

Table 1.1 Developments in dementia care

• Growth in media profile

• Rising expectations of older population for healthcare

• Earlier diagnosis

• New drug treatments

• Transfer of ideas from fields of learning disabilities and neuro-rehabilitation

• Interest in computer and information technology applications

• Application of counselling and psychotherapy to dementia

• Potential of legislation for carers’ needs

• Decision-making by people with dementia.

Challenges for change

The positive developments referred to above do not yet inform dementia services across the UK. There are a number of specific challenges summarised in Table 1.2 and discussed below.

Table 1.2 Challenges for change

• Cost of drugs could lead to competition between medical and psychological or social care.

• Fragmented public- and private-sector provision not geared to needs of people with dementia.

• Provision is poor for people with dementia from black and ethnic minority groups.

• Younger people with dementia have different symptoms and needs for support.

• Dominance of professionals in planning services and care.

• Social and demographic changes will mean fewer female middle-aged family carers to support older relatives.

• Ethical and legal issues associated with diagnosis and consent to treatment.

The cost of providing the new drugs for dementia

Drug costs and the associated services for diagnosing, monitoring and supporting people have not been fully funded by health authorities in the UK. Savings may be made by cutting back on existing services. This could lead to conflict between medical and psychosocial treatment and an unfortunate either/or scenario that is not supportive of the person-centred approach.

Fragmented provision

Despite the ageing of the population and the rise in expectations for high quality treatment, in reality services have been provided in an increasingly fragmented way. Political decisions throughout the 1980s and 1990s have meant that statutory organisations do not provide continuing health- and home care themselves, but negotiate the purchase of ‘care packages’ with the independent sector. Local authority guidance has restricted home care to people whose needs can be met within a given financial limit. This and the limited development of rehabilitation or convalescence models in independent sector homes have contributed to the rise in the number of people in permanent residential and nursing homes.

Needs of people from black and minority ethnic communities

The assessment and care needs of people from black and minority ethnic communities are still not adequately addressed. People with dementia in these communities are at risk of suffering from ignorance of religious and cultural experiences; misdiagnosis based on inappropriate assessment, and sometimes unchallenged racism from other service users and carers. Research has been undertaken to validate assessment instruments with Asian and African Caribbean communities (Rait et al, 2000a; Rait et al, 2000b). ...