Person centred dementia care: problems and possibilities

PurposeDementia care is an issue of increasing policy focus, with person centred approaches becoming synonymous with quality provision in this area. However, the implementation and efficacy of this approach is difficult to measure and there are still huge variations in working practices, with task centred approaches traditionally predominating over more holistic forms of care. In order to address these issues the procedure of dementia care mapping has been developed, which aims to assess the wellbeing of people with dementia and other vulnerable groups through the observation of communal activities. This article aims to critically assess the implementation of a person centred approach.Design/methodology/approachWith the use of dementia care mapping, this article assesses the implementation of a person centred approach with a group of care home residents. All were female, their ages ranged from 77 to 92.FindingsIt is shown that while participants potentially experienced many benefits from person centred approaches and the social engagement and integration that derived from this, its efficacy and impact was undermined by contextual factors such as staff shortages.Originality/valueIn order that contextual factors are recognised and addressed, practice should transcend its focus on the promotion of individual wellbeing and address the wider group and social contexts which can facilitate or prevent its fulfilment.


Introduction
The care of older adults with dementia is one of the fastest growing areas of need with the number of people with dementia in the UK forecast to increase by 154 percent over the next 45 years (Knapp et al, 2007). These demographic trends have been accompanied by increasing demands for the improved delivery of services for people with dementia (Department of Health, 2009), with person centred care becoming synonymous with quality provision in this area (Brooker, 2004). This person centred approach has been adopted as a core standard in 3 the National Service Framework for Older People (Department of Health, 2001).
It provides an alternative to traditional task centred approaches which can promote client passivity and depersonalise the care giving process and can be seen as consisting of four overlapping elements (Brooker, 2004). These include valuing people regardless of their age and health status, treating them as individuals, emphasising their own perspectives and providing them with a positive social environment through the provision of meaningful activity and occupation. Such an approach conforms to the more general advocacy of 'active ageing' and its importance to the promotion of wellbeing and social participation in later life (WHO, 2002).
These developments in person centred care have been reflected in a number of recent research projects. For example, with regard to care home provision, research has been undertaken to prove the efficacy of a person centred approach (Fossey and James, 2008). One such study, by Chenoweth et al (2009) involved a randomised controlled trial in which a person centred care intervention was compared to usual care provision which utilised task centred approaches.
It was found that the first approach lead to improved wellbeing such as reduced levels of agitation in the care home residents. This promotion of person centred care has been accompanied by a more general advocacy of the utilisation of evidence-based practices in health and social care, that is, practices for which there is consistent evidence that they improve client outcomes (HM Treasury, 2006). However, in spite of this commitment to person centred care 4 and the promotion of evidence based approaches (Fossey and James, 2008) there are still huge variations in working practices. This can give rise to unnecessary suffering to people with dementia and their carers through such things as the inappropriate administration of anti-psychotic drugs (All Party Parliamentary Group on Dementia, 2009) and a lack of social stimulation (Alzheimers Society, 2007).
In order to account for this continuing gap between evidence and practice, a number of explanations from different disciplinary perspectives have been put forward (Grol and Grimshaw, 2003). Firstly, cognitive and learning approaches focus on the availability and presentation of evidence. Secondly, behavioural and social influence theories focus on social norms and inadequacies of leadership, feedback, incentives, modelling and external reinforcement. Thirdly organisational and structural theories attribute barriers to knowledge utilisation to the wider environment in which the practitioner operates. Within the field of dementia care, these barriers are likely to be compounded by the under diagnosis of dementia as well as by the widespread assumption that little can be done to alleviate its impact. Difficulties in evaluating the implementation and efficacy of a person centred approach are also an issue, as people with dementia are often unable to fully express their own needs and preferences (Allan, 2001}. In order to facilitate the implementation of person centred care and evidencebased practice, the procedure of dementia care mapping (DCM) is gaining increasing popularity amongst researchers and practitioners (Brooker and Surr, 2005). It is usually performed in a group setting and is designed to assess, through the observation of day-to-day activities the nature and degree of well being experienced by people with dementia. It can also be used as an instrument for the development of person centred care practice (Kitwood, 1997 It will be the purpose of this article to use DCM to assess the utilisation and efficacy of a person centred approach with a group of care home residents. Ways in which this approach can be facilitated and potential barriers to this facilitation will also be identified and discussed.

Methods
For the purpose of this study, five care home residents were selected to take part. While not all had a formal diagnosis of dementia they were all classified by the staff team as being at risk of having significant mental health problems or as 6 being vulnerable to social isolation and exclusion. All were female, their ages ranged from 77 to 92. One had a diagnosis of dementia, two had suspected dementia, one had a diagnosis of depression and one was physically frail.
Ongoing consent was given for their involvement both by the resident themselves as well as by relatives and care home staff. One mapper observed participating residents over six-hour period. As these observations all took place in communal settings, the possibility of conducting an uninterrupted map was limited.
Therefore a series of separate maps were carried out over a period of one week and on six different occasions. The activities observed included physical, intellectual or social components, which have all been identified as crucial to the promotion of wellbeing in later life (Cattan, 2009).
In accordance with the principles of dementia care mapping (Brooker and Surr, 2005), after each five-minute period or 'time frame', two types of codes were used to describe what had happened to each of the five participants. Firstly, behaviour category codes described the type of activity each individual was engaged in while being observed. Secondly, their mood and engagement level was recorded. This was expressed on a six-point scale ranging from minus five for extreme ill-being to plus five for extreme wellbeing and averaged to provide an overall ill-being/well-being score. The incidence of personal detractors and personal enhancers were also recorded. The former refers to staff behaviour that potentially undermines the person hood of participants while the latter refers to staff behaviour that potentially enhances personhood. These detractors and 7 enhancers are linked to five types of psychological need (Kitwood, 1997) including comfort, identity, attachment, occupation and inclusion.

Results
As it can be seen in table 1, the care home appeared to provide a stimulating and inclusive range of activities with leisure pursuits (49%) and exercise sessions (24%) being the most commonly occurring activities. Eating or drinking 9 Being engaged but passively watching 6 Interacting with others 5 Engaging in an expressive or creative activity 2 Walking 2 Receiving practical, physical or personal care 2 8 Episodes relating to urinary excretion or bowel movement 1 As shown in table 2, mood and engagement levels were also overwhelmingly positive for the observed group with only 2% of their time being spent in negative mood/engagement. This illustrates the need for carers to be aware of the individual needs of residents and to respond to these needs when providing support.
Observation 3: exercise session The group were sitting in a circle in the main hall ready for the commencement of a ball throwing exercise.
 Occupation: facilitation (e) -the gym instructor asked Mrs B, to throw him a ball and as she was struggling to do this, his assistant provided Mrs B with appropriate help. She appeared to be pleased when the ball hit its target.  Observation 5: playing bingo A large group of residents were assembled in the lounge playing bingo.
 Comfort: outpacing (d) -Although she did not attempt to communicate the need for help and continued to play, Mrs A appeared to be struggling to follow the game. For the benefit of her and the rest of the group, the facilitator rapidly explained the game and it's rules, although Mrs A apparently still had problems and continued to struggle to keep up.
As the game continued it was clear that the facilitator was also struggling to run the session, as she was in sole charge of a large group and was helped by just one other member of staff who was moving around the group providing assistance to individuals. This helps to highlight how contextual issues such as staff shortages can undermine the quality of care provided. In addition, the issue of outpacing shows how the provision of a person centred approach can be potentially compromised in a group setting due to the differing needs and abilities of individuals within the group.
 Occupation: facilitation (e) -Mrs A indicated to a care worker that she would like to go to the toilet and was subsequently assisted to do this and left the lounge.
 Attachment: acknowledgement (e) -as a member of staff began to assist her out of the lounge, she realised that Mrs B had been incontinent, she proved her with reassurance and empathy, telling her that she would take her back to her flat and help her to change her clothes.
Observation 6: exercise session The group were assembling in the main hall ready for an exercise session.

Discussion
There is much evidence to suggest that the observed care home does conform to the elements of person centred care, providing a positive and stimulating environment. With reference to mapping data, this is illustrated by the fact that mood and engagement levels were overwhelmingly positive. It is also shown by the great predominance of enhancing staff behaviour, particularly relating to the psychological need of occupation and by the high incidence of activity related codes in the behaviour category profiles. This involvement in activities has been widely recognised as being crucial to successful ageing which has been described as multidimensional, involving the maintenance of cognitive function as well as engagement in productive and social activities (Cattan, 2009). However, as mapping is normally conducted in communal settings, the observations reported here did not take place consecutively but focussed largely on structured activities taking place over a whole week. This may help to account for the fact that the incidence of activity related behaviour codes was so high, perhaps giving an over optimistic picture of the incidence of meaningful occupation amongst residents (Packer, 2000a).
As its name suggests, a central feature of person centred care is the recognition of the needs and perspectives of the individual (Brooker, 2004). This approach was evident in the mapping exercise with staff regularly consulting with residents and displaying a prior knowledge of their needs and abilities, especially relating to the 'staff enhancer' category of 'facilitation'. This can be seen for example in the dining room (observation 2) when a carer adjusted Mrs A's chair at the table thus enabling her to reach her plate. However, in spite of the homes commitment to providing an individualised approach, this process, can easily exclude vulnerable groups such as those with dementia, who are often reliant on others for their needs to be recognised and addressed (Allan, 2001).
This exclusion can take place on a number of levels such as in their involvement in committees and review meetings. It can also take place in the 'hands on' support provided by care staff. For example, the mapping exercise revealed that the needs and priorities of Mrs B were subsumed to those of the carers who wheeled her out of the variety show earlier than she wanted (observation 1).
Similar, imposition was experienced by Mrs A, when she was given assistance that she did not want during an exercise session (observation 3). This serves to highlight the dilemma between care and control faced by care staff. This 15 dilemma can be exacerbated by an organisational emphasis on maintaining resident's safety (Brooker, 2004) which can lead to a task-centred approach and the overprotection and subsequent 'institutionalisation' (Goffman, 1961)  While dementia care mapping tends to focus on interactions between staff and residents, the context in which activities take place also has the potential to promote the wellbeing of participants (Manor, 1999) with group activities helping to enhance mutual cohesion and interaction (Vintner, 1967). This can be seen, for example, in the card game (observation 4) when Mrs C helped Mrs B in arranging her cards. It can also be seen in the exercise session (observation 6) in which members of the group joined Mrs E in her celebration of her success in ball throwing. However, while DCM requires the mapper to record all significant interactions between staff and residents, it does not require the detailed recording of interactions between residents. This can lead to an individualised focus and a subsequent neglect of mutual interaction which has been found to be major curative factors in group activities (Doel and Sawdon, 1999). In this respect, person centred care and the associated procedure of dementia care mapping can reflect the individualistic approach of community care policy and 16 social care practice. This is because it places great emphasis on individual need and the achievement of independence with little reference to the individuals relation to others (Phillips, 2001).
In spite of the potentially beneficial aspects of group activities, they can also compromise the provision of a person centred approach due for example to the differing needs and abilities of individuals within the group (Packer, 2000b). This can be seen in the bingo session (observation 5) in which Mrs A struggled to keep up, a situation that was compounded by apparent staff shortages (Packer, 2000b). Furthermore, as the care home did not cater specifically for people with dementia, residents with such a diagnosis or with other mental or physical disabilities were at particular risk of being stigmatised and marginalised amongst the wider resident group (Packer, 2000c). This issue of marginalisation is of particular relevance to group work in a care home setting where resident populations are increasingly diverse, with two thirds being estimated to have diagnosed or suspected dementia (Alzheimers Society, 2007). In spite of this high incidence, its prevalence tends to be underestimated with around two thirds of people with dementia not receiving a formal diagnosis (National Audit Office, 2007). This has led to a neglect of the need for workforce development in this area with primary reliance still tending to be on personal experience and past employment in a similar setting (Korczyk, 2004).
Even when training is provided it does not always include a dementia specific component, which experts agree should include a basic knowledge of dementia, person centred care and quality of life for people with dementia (Bowers, 2008).
This neglect of dementia specific training is likely to be compounded by the assumption that nothing can be done to improve the wellbeing of such groups as well as by lack of regulation, resource constraints and the high turnover of care can lead to staff frustration if training in good practice cannot be implemented (Bowers, 2008). In recognition of these issues, a number of policy initiatives have been recommended or implemented. Thus, the All Party Parliamentary Group on Dementia (2009) make a number of recommendations for change.
These include responsive and ongoing mandatory training for care staff, well informed and skilled managers and the promotion of organisational cultures that facilitate the provision of good quality care. These recommendations correspond to the recommendations of the recently launched National Dementia Strategy for England (Department of Health, 2009) that aims to promote an informed and effective workforce for people with dementia.   In order to combat inconsistencies in this area, greater regulation is also recommended for training, training providers and service provision as well as 18 better integration between social and health care staff. These recommendations will be facilitated by policy developments such as the establishment of a new regulatory body, the Care Quality Commission, which will be responsible for regulating and inspecting all services in order to promote good dementia care.
With specific regard to training, new qualification structures are emerging with the new Qualifications and Credit Framework Skills for Care. This will reform the existing set of National Vocational Qualifications and Vocationally Related Qualifications and facilitate the development of a dementia specific qualification pathway. As Brooker (2004) observes, societal prejudice towards people with dementia should also be addressed, for this gives rise to discrimination not only in the status, pay and training of dementia care workers but also in service provision and resource allocation. In order for this to be achieved, service providers should not only aim to maximise the quality and availability of support but should also focus on the advocacy and empowerment of the groups that they serve. Such processes are already apparent with trends towards an ageing population increasing the social influence of older age groups and putting older people's issues to the forefront of the political and policy agenda (Gilleard and Higgs, 2000). While thanks to the work of pressure groups such as the Alzheimer's Associations the rights of people with dementia are more recognised than ever before (Brooker, 2004).

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This article has demonstrated the way in which person centred care helped to promote the wellbeing of a group of care home residents. It has also been shown how contextual factors such as staff shortages, inadequate leadership, training and regulation as well as the increasingly diverse needs of care home residents can potentially undermine these benefits. Further contextual barriers are apparent in the inherent ageism of contemporary society as well as in the dual jeopardy experienced by older people with a cognitive disability (Brooker, 2004). In order that these barriers are addressed policy and practice should not only focus on the promotion of a person centred approach. It should also focus on older people's role as active social participants (WHO, 2002) rather than as the passive recipients of welfare and on the multiple factors that can undermine their capacity to engage in this participation.