The Care Home Experience Alisoun Milne

INTRODUCTION

This chapter aims to highlight the key dimensions of the evidence base exploring the experience of living in a care home, with a particular focus on dementia. Despite the extent of recent policy and practice attention paid to care homes in both the UK and the US, surprisingly little is known about residents’ lived experience. Research is only now beginning to take account of the perspective of users with dementia and is embarking on the not inconsiderable task of developing tools and methodologies that can meaningfully capture their voices¹. By way of introduction, the broader context within which the care home experience is located is provided before moving onto the chapter’s core focus. Although much of the evidence presented is drawn from UK research, key messages are equally applicable to the US and mainland Europe.

Background

In the United Kingdom about 5% of the total population aged over 65 lives in care homes. This is comparable with other European countries, the figure being slightly higher in Scandinavia². In the United States 4.2% of the 65 and over population live in nursing homes³. In terms of absolute numbers, in 2007 420 000 people lived in care homes in the UK while in the US over 1.8 million people lived in nursing homes. It is important to note that US figures do not include ‘assisted living facilities’ whereas UK figures incorporate care homes that do not provide nursing careⁱ as well as those that do.

Care homes’ residents tend to be very elderly and frail; multiple physical problems and/or co-morbidity with mental disorders are common⁴. Typically, UK residents are aged over 80 years, are female, have previously lived alone, are on a low income and have multiple disabilities. In a recent UK study of 16 000 residents, over half had dementia, stroke or other neurodegenerative disease, 78% had at least one form of mental impairment, 71% were incontinent and 76% needed help with mobility or were immobile⁵; 27% were immobile, confused and incontinent. It is estimated that over two thirds of people living in all UK care homes have dementia, most often in the advanced stage, and about a third of all care home places are registered to provide specialist dementia care⁶. In the US it is estimated that 23-42% of residential community/assisted living residents have moderate or severe dementia. Many residents with dementia experience behavioural problems such as activity disturbances (agitation), aggression and psychosis; reported prevalence of these so-called ‘challenging behaviours’ can be as high as 90%⁷.

In addition, an estimated 50% of all care home residents have depressive disorders that would warrant intervention⁸. Depression in care home populations is associated with functional impairment (e.g. sensory loss, incontinence, loss of mobility), physical health problems (notably pain, dysphasia and heart disease), and social problems such as loneliness⁹. Due to the complexity of assessing the extent of depression among people with dementia and the limited evidence base, it has been suggested that depression in care home residents is often either under-or misdiagnosed¹⁰. Anxiety symptoms are also relatively common; they are particularly associated with depression and stroke¹¹.

Living with Dementia in a Care Home

Despite the predominance of older people with dementia in care homes, research that draws on the experience of this group of residents has only recently emerged. In part, this reflects the liminal status of people with dementia inside, and outside, the ‘care system’, as well as the genuine complexity of collecting data from people whose cognitive capacity and communication skills may be limited¹². It is notable that an accumulating body of evidence offers valuable insights into the subjective experience of living with early stage dementia. It is also increasingly accepted that people in the middle to late stages of dementia retain the capacity for emotional expression and many can reliably express preferences¹³. As improving long term care for people with dementia is now a key policy priority in both the UK and US, the continuing marginalization of this pivotal perspective in both the practice and research arenas can no longer be justified¹⁴.

Currently, there are two main sources of evidence about ‘the care home experience’. One draws on practice-based work whose core aim is that of improving care. ‘Dementia care mapping’ (DCM) is the most prominent example of this type of work; its influence also extends into the realms of research and inspection (see below)¹. The second source is drawn from research that has attempted to capture the nature and dimensions of care home life ‘from the inside’ and/or through the eyes of carers¹⁵. Predominantly this material is gathered from observational or questionna1re-based studies. which provide valuable insights and include evidence about the experience of the person with dementia; work that focuses specifically on the subjective experience of users is a new addition to the research portfolio¹⁶.

These two areas of activity combine around the concepts of quality of life and quality of care. both pivotal to the experience of living with dementia in a care home. As quality indicators used by the Commission for Social Care Inspectionⁱⁱ.ⁱⁱⁱ (CSCI) move to focus more on ‘outcomes of care’. taking account of the perspective of the person with dementia becomes increasingly important¹⁷. A brief review of research findings about quality of life in care homes for people with dementia and ‘what is important’ to residents will be offered before turning to evidence about their lived experiences.

Quality of Life and Quality of Care

Assessing quality of life among care home residents is a difficult task; it is a complex construct. which is variously measured and evaluated. A number of scales do exist. several of which have been specifically developed for people with dementia; these include the Quality of Life in Alzheimer’s Disease (QoL-AD)¹⁸ scale. the DEMQOL¹⁹ and the DQol²⁰. A persistent challenge in evaluating quality of life is that there are often differences between the ratings of staff. carers and residents. This appears to be a consequence of a difference in emphasis: a recent study found that residents’ quality of life scores were most affected by the presence of depression and anxiety. whereas staff ratings were associated with dependency and behaviour problems²¹. A full picture of quality of life may thus require a combination of measures. incorporating the observations of all three groups²².

Despite the difficulties associated with measurement. evidence to date suggests that quality of life in care homes is largely determined by the existence of mental health problems and subjective well-being¹¹. Systematic assessment of residents’ needs. and consideration of whether or not they have been met. has been suggested as a means of improving quality of life. The Camberwell Assessment of Need for the Elderly has been used towards this end²³.

Limited consensus also exists in relation to the linked concept of quality of care. First – as with quality of life – there are multiple perspectives to be accommodated. Second. the components of ‘care’ include those elements that are provided within the home as well as those offered by external sources. such as medical care. Third. good quality care depends on a range of micro level (satisfied staff) and macro level (financial stability of the provider) factors and their interaction; this make its assessment complex and multifaceted. An important contribution to this field has been the development of DCM. an observational approach where items recording residents’ activity can be combined to calculate a care index score²⁴ (see Chapter 30 for details on DCM). Given the limitations of all approaches to gathering information about quality of life and quality of care. an approach that accommodates multiple methods is recommended. rather than relying on a single source of evidence²⁵.

As might be expected. evidence about the quality of care in homes is mixed. Some of the variation between studies results from methodological differences. For example. studies adopting a ‘checklist’ approach tend to reach more positive conclusions than those using direct observations²⁶. There is more robust evidence in relationship to those issues that impact negatively on user quality of life. These include prescribing patterns and covert administration of medication. physical restraint. electronic tagging and abuse²⁷.

In terms of therapeutic care practice. a recent survey undertaken by the Alzheimer’s Society²⁸ of 4084 family carers. and care home workers and managers found that people with dementia are not always afforded dignity and respect. ‘Dementia’ had become a label that subsumes all other needs and submerges the person’s characteristics; this tendency undermines the delivery of individualized care and encourages a task-oriented approach. Lack of activity and stimulation were also highlighted. particularly for people with severe dementia. As the availability of activities and opportunities for occupation is a major determinant of quality of life affecting depression. physical function and behavioural symptoms. this is a primary concern.

A 2007 CSCI¹⁷ inspection of care homes for people with dementia echoes a number of these themes. Although the inspectors found some excellent examples of one-to-one attention and care offered with warmth. understanding and tolerance. impersonal assistance was widely in evidence. The report noted that quality of staff communication with residents – both verbal and non-verbal – had a significant impact on well-being. Positive communication that is warm and friendly results in the person with dementia feeling happy and relaxed. Conversely. negative or neutral communication – interactions that are impersonal or task focused – leave residents feeling distressed and withdrawn. It is thus evident from this and other CSCI inspections that residents with dementia do not always receive person-centred care – care which is delivered in ways that promote independence and which draw on the individual’s life course and experiences. It is to the role of experience in extending understanding of the person with dementia’s life in a care home that we now turn.

Evaluating the Experiences of the Person with Dementia

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