An Evaluation of Day Care Services for People with Dementia from the Perspective of Major Stakeholders (March 2001)

Esther Walker & Belinda Dewar, Queen Margaret University College, with Jan Dewing & Emma Pritchard, Royal College of Nursing, London

Funded by Alzheimer Scotland

Executive Summary

1. Introduction

The modern NHS, with government encouragement, values a co-operative care relationship between professional carers and those in receipt of care (Department of Health 1991, 1998, The Scottish Office 1997). The intention is for care practice to support the autonomy and human rights of the individual and to treat them with dignity and respect. As a result, there has been considerable change in the way that service users are perceived within the NHS and related health and social services. The role of 'patient' has been redefined from that of passive recipient of care to that of responsible and active participant in care. Allied to this new philosophy of care is the development of nursing theory away from a purely medical model towards holistic care in which patients are treated as individuals (Davies et al. 1997, Jenkins & Price 1996).

In this change context, various approaches to the care of people with dementia have emerged. New approaches to dementia care, focus on personhood, and challenge traditional approaches by asserting that dementia care must be alive to the social and environmental context in which it is delivered (Bredin et al. 1995). In the context of day care, the traditional approach to dementia care regards respite for the carer as the main purpose of day care: it is there to keep them going (Nolan 1994). However, in the new culture of dementia care, what is expected from day care in terms of service to the carer and service to the person with dementia has grown considerably. Given the financial cost of health and social care, services must be evaluated to determine whether they are worth that cost or not.

Just as there have been changes in perceptions of dementia care, there have been concomitant changes in perceptions of how one sets about evaluating services. It is now commonly believed that the views of service users should inform service evaluation and development. If evaluations are concerned to examine 'quality', then service users should determine what constitutes 'quality' (Philip & Stewart 1999) and be involved in the development of outcome measures relevant to their needs and circumstances (Bond 1999, Gwyther 1997, Higginson et al. 1997).

Generally in service evaluation, it was not the views of people with dementia that were sought but those of their informal carers (McKee 1999). Similarly, the quality of life of people with dementia was largely investigated through proxies (usually their informal carer) and through observation. It is important to include their views for two reasons. Firstly, they may have different priorities with regards to the service they receive than those of the service providers. Secondly, informal carers often know little about the service (Bamford 1998). The views of people with dementia can be sought through conversations, over a period of time, conducted with sensitivity to the subject matter and to the setting (Reed & Payton 1998, Bamford 1998).

Existing research suggests that it is the social, interpersonal and emotional aspects of life that are important to people with dementia rather than the physical aspects (Dabbs 1999, Gwyther 1997). Dabbs (1999) carried out in-depth interviews with sixteen people with dementia about their quality of life. He found that the reason most gave for enjoying day care centres was the sociability. The emotional issues of priority to them were:

• the loss of independence and control;
• having a meaningful role in life;
• anxiety about their carers;
• fear and loneliness.

The study reported here used a combination of methods to evaluate two day care facilities. There were two principal reasons for this. Firstly, it enabled us to triangulate data in our analyses to ensure the validity of our findings. Secondly, it enabled us to access the experience and views of the major stakeholders (i.e. service providers, people with dementia and carers).

An evaluation methodology was adopted that emphasised participation of service providers and users in the evaluation process. This emphasis was important for two respects: firstly, because it acknowledges that service development is dependent on the commitment and motivation of service providers; secondly, because it reflects the emphasis placed by policymakers on involving service users in service evaluation and development.

2. Aim of the Study

The aim of the study was to evaluate day care services for people with dementia from the perspective of major stakeholders: that is, those who provide the service and those who use it. To achieve this, six key questions were addressed:

1. How do the stakeholders (i.e. staff, carers and people with dementia) perceive the service?
2. What are the stakeholders' expectations of the service?
3. To what extent is the service meeting these expectations (and what improvements are needed)?
4. What are the benefits of the service to clients and their carers?
5. What factors, as perceived by staff and carers, determine admission to day care?
6. From the perspectives of stakeholders, how does attending the day care centre affect the future care plans of the person with dementia?

3. Methods

The study is structured around two case studies (Field Site 1 and Field Site 2). A day centre in the voluntary sector provided the first case study. The second was provided by a day hospital, managed by a Primary Health Care Trust, and located within a hospital specialising in the care of older people. Multiple methods of data collection were employed.

3.1 Methods used to elicit perspective of staff

Sample. Day Centre n=12. Day Hospital n=9.

• Focus Group Discussions.
  Focus groups (a minimum of 5) with staff took place at regular intervals in each field site. This included qualified nurses, volunteers and care assistants. Each discussion lasted between 30 minutes and 1 hour. These were audio-recorded, and detailed notes were then taken.
• Individual Interviews.
  Individual interviews were also held with each member of staff to provide an opportunity to explore their personal views and experiences about the service more fully. The key questions we asked included: what do you see as your role? what are you aiming to achieve as a team/as an individual? what do you see as the benefits for the patient/carer? how do you evaluate the effectiveness of what you do?
• Organisation and Culture Questionnaire.
  A brief questionnaire (adapted from Bate 1994) was completed anonymously by staff at both Field Sites. The way in which staff view the cultural and organisational context in which they work represented additional contextual data that may have an impact on their ability to deliver high quality services that respects the personhood of the individual with dementia.
• Observation.
  During periods of observation the team was looking at: the kinds of care that were being provided; how staff and service users were interacting; the kinds of events that took place and how these were managed by staff. Detailed field notes were made which then formed the basis of subsequent discussions with staff.

3.2 Methods used to elicit perspective of person with dementia

Sample. In Field Site 1 n=11 people with dementia were involved in Dementia Care Mapping and n=5 people were interviewed. In Field Site 2 n=10 people with dementia were involved in Dementia Care Mapping and n=5 people were interviewed.

• Dementia Care Mapping.
  Dementia care mapping (DCM) is an observational method. It is designed to evaluate quality of care through close observation of people with dementia in their care setting. DCM is described as method to assess the well-being of people with dementia in relation to the social psychology that surrounds them (Kitwood and Bredin, 1992).
• Interviews.
  Interviews were carried out using guided conversation techniques (Ehernberger Hamilton 1994, Mills 1998). This enables the person with dementia to set the agenda for the conversation in a way that respects their dignity and well-being.

3.3 Methods used to elicit perspective of carer

Sample: Field Site 1 n=7; Field Site 2 n=7.

• The Schedule for the Evaluation of Individual Quality of Life (Ciaran et al. 1993). SEIQoL is designed to attain a greater level of individual subjectivity in reports on quality of life than is achieved through standard measures of quality of life. SEIQoL is designed to measure three elements of quality of life:
• Those five aspects of life considered by the individual to be crucial to his/her quality of life are elicited by means of a structured interview.
• The current levels of satisfaction expressed by the individual in relation to each of these five aspects.
• The relative importance of each aspect of quality of life is measured by deriving the weight the individual assigns to each aspect in judging overall quality of life
• The Problem Checklist and Strain Scale (Gilleard and Watt 1982, Gilleard 1984). This tool was used identify problems experienced by carers of people with dementia and to assess the level of strain they were under. This provided important information about carer well being.
• Interviews. Brief interviews were held with carers to explore their perceptions and expectations regarding the day care service they received.

4. Ethics

Ethical permission was granted from the Local Research Ethics Committee. Informed consent for all participants was obtained. Particular consideration was given to the person with dementia.

5. Data Analysis

• Constant Comparative Analysis (Strauss & Corbin 1998).
  The collection of fieldwork and interview data (in the form of observation notes, formal and informal discussions with staff and people with dementia, and interviews with carers) and the analyses of those data were done in tandem. The method of analysis used was constant comparative analysis in which sections of data (whether they be interview, documentary or observation) are compared to identify salient categories and themes and to clarify characteristics.
• Descriptive Statistics.
  The culture and organisation questionnaire, DCM and the Problem Checklist and Strain Scale were analysed using descriptive statistics. With the SEIQoL data, the relative weight that the individual attached to each cue was calculated. Overall quality of life score for each person were derived. Comparisons of scores over time were made and analysed in the context of other data.

6. Key Themes

• Care philosophy.
  Whether the care philosophy, and in particular the concept of person-centred care, can be traced through the operations of the day care facility to the benefit of the service user.
• Standards and Evaluation.
  The development of day care requires standards for quality of care and processes of internal and external evaluation. These processes will involve staff in becoming more aware of the concept of well-being in relation to the person with dementia and of how the care environment affects that well-being.
• Value for carers.
  Although carers value the respite and support offered by the service, most had limited knowledge of what the service provided the person with dementia. The range of services available to carers is limited. Currently, there is no service that bridges the gap between day care and nursing home care.

7. Recommendations

7.1 Care Philosophy

• The managers and staff within a day care facility should have a shared vision about the service they want to deliver.
• Day care services should inspect their practice in relation to the recommendation made by Dabbs (1999) about the central aim of all services for people with dementia: the aims should be
  "to foster well-being, identify/self-worth and personhood and to meet their individual need for genuine love. Underlying this must be the continuing development of 'positive social-psychology'. (p 85).
  This ties in with the approach suggested by the Bradford Dementia Group (Adams 1996). The Group advises that to maintain a state of comparative well-being, people with dementia need to achieve
  • a sense of personal worth
  • a sense of agency
  • social confidence
  • a sense of hope and trust that all will be well (Kitwood & Bredin 1992a)
  Services should be designed to enable them to achieve those.

7.2 Standards and Evaluation

• Day care services should develop care plans that incorporate knowledge about the person and assessment of changing needs and use this knowledge to plan care that is therapeutic in its benefits
• Day care services should examine the relationship that is created between staff and people with dementia to identify how those interactions may undermine the well-being of individuals.
• Day care services should examine their practices and procedures for opportunities to deliver therapeutic benefit to people with dementia: e.g. to capitalise on all opportunities for people with dementia to feel that they are contributing usefully to the community.
• This study and others (e.g. Barnett 2000, Dabbs 1999, Dewing & Pritchard 2000) highlight the specialist nature of dementia care. Many staff at day care facilities do not have specialist knowledge in dementia care. Therefore, input from experts in this area is required to respond to these recommendations.
• National standards for day care services for people with dementia should be developed and disseminated so that services can then be evaluated.
• The training that is available to those working in dementia care settings (e.g. Scottish Vocational Qualification in Dementia Care, Registered Mental Health Nursing) should be evaluated to see if it meets the needs of those working in this area.
• Staff need to evaluate their service to ensure that the benefits they anticipate are delivered in practice. Part of the activity involves staff in raising their awareness of how their attitudes and assumptions impact on their ability to listen to the person with dementia. Any changes to dementia care will meet possible sources of resistance that need to be acknowledged. These include:
  • the low status given to "care of the elderly", and to people with dementia in particular;
  • the power and prestige of the medical profession;
  • the dead weight of tradition, based on centuries old institutional practices;
  • psychological defences, especially the influence of the medical model on doctors, other paid staff and family carers (Dabbs 1999).
• Observation (by members of staff) can provide a useful way for service providers to evaluate their service. It provides a way of examining the relationship between rhetoric and practice. It provides space for staff to look at their work from a different perspective. It also, importantly, ensures that good practice is identified and valued. One of the reasons why DCM provides a very useful tool for internal evaluation is because the data it generates is quantitative. Staff in one of the Field Sites responded more positively to criticisms that were identified through DCM than to criticisms that were identified through fieldwork observations. It appeared that although the criticisms were the same, they carried more weight when directly supported by statistical evidence.
• The development of day care services relies on those services finding ways of integrating service delivery and service evaluation, and establishing open discussion about practice among staff and service users.
• In order for service users, like carers, to be involved in service evaluation, ways need to be found (e.g. negotiating a pattern of contact between staff and carers, the importance of dialogue) to encourage them to be more open about what they need and to share their concerns.
• Staff and carers should maintain a journal which details, for example, how the person is, if there are any changes and recommendations for care.
• Rigorous procedures for evaluation and development of day care services should be put in place both at local and national levels to address the gap between espoused aims and practice. This needs to be incorporated into the national agenda for policy development.

7.3 Value for carer

• We need to explore the factors that prompt the end of home based care to identify what services might be appropriate to meet carers' changing needs: e.g. carer coaching in dealing with difficult behaviour, interventions that address the deterioration that can occur as a result of acute hospital admission.
• A larger, longitudinal study is required to explore these factors.
• It cannot be expected that day care services can be funded on a long-term basis simply to provide respite for the carer. The carer and the person with dementia need time apart from one another. However, interventions could be designed to assist them to live with dementia more positively. Effort and creativity is needed to develop high quality and innovative approaches to day care that both enable the carer to feel relieved and supported, and provides therapeutic experiences that enhances the well-being of the person with dementia. Given the number of people who are in receipt of day care, it is essential to develop national policy, national standards and professional education to support and maintain a high quality of service.

For further details and copies of the full report please contact:

Belinda Dewar

The Royal Bank of Scotland Centre for the Older Person's Agenda

Queen Margaret University

Edinburgh

Telephone: 0131 317 3575

e-mail: bdewar@qmu.ac.uk

© Copyright The Royal Bank of Scotland Centre for the Older Person's Agenda, 2007