Person-centred dementia care: a reality check in two nursing homes in Ireland

Abstract

The introduction of a person-centred care (PCC) approach to dementia care has been a major paradigmatic shift in the care provision in residential settings for older adults in Ireland. However, policy implementation in nursing homes relies very much on the preparedness of nursing staff. This study explored this through semi-structured interviews with care assistants in two nursing homes which professed to support the PCC philosophy. We addressed their knowledge and perspectives of person-centred dementia care and views on various factors affecting its delivery. Findings showed considerable disparity between policy and practice, in particular because care assistants lacked clarity on what PCC is and reported that they were not educated in it. Notwithstanding this, carers’ perspectives on ‘good care’ for people with dementia included elements of PCC which suggested its ‘implicit’ use in practice. Besides the necessity of more (and more explicit) training on PCC, the findings also suggest concerns around communication between staff and management and the need for improvement of staffing resources and available time in residential settings in order to make the delivery of person-centred dementia care a reality.

Keywords

care assistant dementia care nursing home person-centred care

Introduction

Person-centred care (PCC) is based on the principle that the wishes of service users, patients or clients should be central to the care that is provided. Health care workers implementing PCC should listen well, be empathetic, display unconditional regard, and be sensitive to individual differences (An Bord Altranais (ABA), 2004). The person centred approach was first introduced in psychotherapy by Rogers (1951) (see also Cepeda & Davenport, 2006), but has since been adopted widely in health care. This development was essentially a reaction to the threat of an overly ‘medicalised’ approach to health care fuelled by medical advances, which disempowers and dehumanises the patient or service user. Similarly in dementia care, the predominance of the bio-medical approach became a matter of concern. Tom Kitwood (1988) was an early critic who questioned the emphasis on individual neuropathology, while important external factors on disease progression were overlooked. He exposed the limitations of exclusively task oriented, authoritarian, deficit focused care provision and advocated for the use of person centredness in dementia care. In his perspective, dementia care givers should demonstrate a core focus on the uniqueness of the client or patient and put an understanding of the person before the illness or disability. Furthermore, the emphasis should be on aspects such as, knowing the client, respecting clients’ preferences, focus on individual clients’ needs, working together (therapeutic interaction) and providing a stimulating environment. He proceeded to develop person centred guidance on communication and relationships with the person with dementia (Kitwood, 1997). Kitwood’s perspectives were summarised more recently in the VIPS framework developed by Brooker (2004). In this framework, ‘V’ stands for the assertion of the value of humans regardless of age or cognitive ability, ‘I’ indicates the emphasis on individualised care, ‘P’ means taking the perspective of the person living with dementia, and ‘S’ suggests the use of positive social psychology to enhance well-being in the person living with dementia (Røsvik, Brooker, Mjorud, & Kirkevold, 2013).

Implementation in practice has been developed in the form of approaches such as the VIPS Practice Model (VPM) (Røsvik, Kirkevold, Engedal, Brooker, & Kirkevold, 2011) and Dementia Care Mapping (DCM) (Brooker, 2005). Considering the intricacies and ambition of these models, it should not surprise us that their implementation is not given. Overall the approach to PCC lacks a unitary perspective (Bruus, Varik, Aso, Kalam-Salminen, & Routasalo, 2012; Hughes, Heather, Reilly, Burns., & Challis, 2008; Kitson, Marshall, Basset, & Zeitz, 2012) with some authors emphasising the individualised treatment aspect, while others see it mainly as a set of different techniques or a means of communication (Brooker, 2004). It is safe to say that it has become a rich area of debate (Adams & Gardiner, 2005; Murray & Boyd, 2009), but very often PCC is not very well understood among care givers or simply used as a ‘facade’ with little actual implementation in place (Kitwood, 1997). It does not help that many practitioners consider PCC to be ‘simply' synonymous with the provision of good care (Morton, 1999) without further specifying what that is. Nonetheless, the use of PCC in dementia is considered possible and generally considered desirable (Bruus et al., 2012). More specifically, Kitson, Marshall, Basset, and Zeitz’s (2012) systematic review traced consensus in the emphasis on three areas of importance: patient participation and involvement; the quality of the relationship between patient and the health professional; and the context in which the care is delivered. They conclude that there is an urgent need for a common conceptual framework to activate all agents involved in the care process in order to make PCC a reality.

Apart from this lack of a common framework there are other reasons why policy makers, nursing home management, and staff might not be similarly imbued with the PCC ethos. Often PCC is seen as idealistic (Packer, 2000) or very difficult to implement especially when dementia is advanced and personal expression and decision making has become severely compromised. Furthermore, because of the mounting pressure for nursing homes to adapt to an increasing number of older people with dementia, the provision of personalised care may be under pressure. With an aging population in Ireland, this is also an Irish concern (Cahill, O’Shea, & Pierce, 2012). So while the aspiration to implement PCC is generally supported in the literature and at the level of policymakers and nursing home management, it remains to be seen to what extent the challenge of delivering PCC on the ground can be met.

The weight of this pressure may be felt most strongly among those who spend most time with nursing home residents with dementia: care assistants. While policy makers and nursing home managers may have something to say about the intricacies of translating policies into practice, it is those who deliver the actual care who are best placed to provide us with insights around the day to day implementation of PCC. Therefore, a reality check of PCC in dementia care had to involve care assistants.

Method

Specifically, the aim of this qualitative study was to identify perspectives and experiences of care assistants with PCC in the nursing home in which they worked.

Specific objectives included to address:

knowledge, education and attitudes around PCC,

obstacles and challenges around the implementation of PCC.

Ultimately the study has been conducted to address the reality of PCC in nursing homes with a view of improving care. The discussion of its findings highlights these aspects.

The study made use of semi-structured interviews with care assistants (n = 13) recruited from two nursing homes with a PCC policy. Both of the nursing homes had over 100 residents, of which around 80% had symptoms of dementia. The focus in the study was on care assistants only, because they are the group of professionals that spend most of the time with clients with dementia, and are therefore in a key position to discuss the actual implementation of PCC with this group. With much of the debate on PCC taking place at policy and management level it is of particular importance to give voice to those who do the actual work. A phenomenological approach was used in the design of the interviews and the qualitative data analysis. In this approach, the emphasis is on the lived experience of the participants.

Inclusion criteria for participation were that: (a) the carers had worked for at least one year in this role, to ensure that they would have enough practical experience and knowledge to refer to in their response to the interview questions; and (b) they had been educated and received a diploma in ‘Healthcare Support’. This is an educational programme which serves as a prerequisite to work as a care assistant in Ireland (Health Information and Quality Authority (HIQA), 2008) and has been developed to guarantee good standards of care. Without this diploma a person is not allowed to work as a care assistant in Ireland.

Recruitment took place through the activities coordinator of each centre, who passed on invitation letters to the care assistants. They could then contact the researcher if they wished to be interviewed by means of email or phone. Participation was anonymous and management of the nursing homes was not informed of who took part. Consent was solicited according to the declaration of Helsinki guidelines. Ethical approval for the study was granted by the Faculty of Health in the authors’ university. Interviews took between 35 min and 1 h and were audio recorded and transcribed. In addition, field notes were taken. The interview protocol comprised of 11 questions focusing on the aims of the study.

Data analysis took place with the use of Newell and Burnard’s (2006) method which includes the following procedure: a) initial analysis through the review of field notes; b) transcription and reading of transcripts in order to get familiar with the text; c) extraction of participants’ perspectives; d) identification of emerging themes and sub-themes; d) open coding to reduce the data; e) related or overlapping codes were merged in order to create a shortened list of category codes; f) findings were discussed by the authors and related to the aims of the study to organise reporting findings.

Results

The analysis of the data yielded four emerging themes. These themes, along with their corresponding sub-themes and main findings are shown in Table 1.

Table 1.

Main findings.

Themes	Subthemes	Main findings
Person-centred care	• Education/training • Knowledge	○ Mostly no education/training in person-centred care ○ Limited core knowledge of person-centred care
Good care	• Aspects of good care • Implicit person-centred care	○ Perceptions of good care implicitly incorporated elements of PCC
Dementia care in practice	• Communication issues • Relationship client/carer • Characteristics of clients with dementia • Education on dementia	○ Carers emphasised debilitating aspects of dementia ○ They were confident in their understanding of dementia care
Sources of pressure	• Staff factors • Organisation factors • Client factors • Family factors	○ Time and staffing constraints impinge on ‘good care’ provision

Person-centred care

Most participants had not received Education/training in PCC. In addition to a diploma in Healthcare Support, the majority of participants reported additional training in nursing home care or dementia care. Nonetheless, 10 out of 13 participants reported that they had not received any specific training in PCC. The three that reported PCC aspects in their training provided somewhat atypical descriptions. One explained that the training was focused on the creation of activities that would suit every resident’s needs, another explained that they watched a video of different centres where PCC is used with clients, and the third one said that training was focused on sonas and ‘snoezelen’ (a relaxation method).

But the majority of the carers have never had any training in PCC.

“No, never. I didn't know it exists.” (Ca 8)

Perhaps in reaction to this, several participants considered that their best education was received on the ward.

“A lot of my training has come from the floor. And our senior carers and our management are fantastic, and they guide you. You're learning all the time, and it doesn't matter what courses you do, what you learn from a book, experience on the floor is priority.” (Ca5)

Nonetheless, participants conceded that education and courses are necessary to improve their knowledge of dementia, how to deliver good care, and how to deal with challenging situations.

Knowledge of PCC was also limited. Answers were vague, demonstrated confusion, or deviating ideas of PCC. Among the 13 participants, 4 had not heard of PCC. Only one of the participants seemed to be able to articulate core ideas around PCC, although some relevant elements were reported:

“Yeah, it's regarding the care of the individual. It regards their individual needs, their social needs, and their personality basically” (Ca4)

“It means give them a lot more time. Let them know that you are there for them. That would be my person centred care. To try make them happier.” (Ca10)

“PCC…you are looking after their needs opposed to just their physical needs. Like walking, breathing, eating, they need more than that” (Ca3)

Just one carer mentioned that good care has to start from the idea of person-centred care.

“Good care to me is ensuring that the person is, as I said earlier, you've got to take this person centred care mentality with you. You've got to ensure that, not just the physical aspects of the care are taken, as you’re doing your job, but that you’re taking the person's wishes into consideration as well.” (Ca1)

The same participant also pointed out that:

“When a client is receiving ‘good’ care or person centred care, there is a noticeable difference in the behaviour. Almost always the client is happier, calmer, more open with the carer, which makes the carers' job much easier.” (Ca1)

While the interviews had been intended to delve more deeply into PCC, the lack of knowledge curtailed this aspect. Participants had more to say about what they considered to be ‘good care’.

Good care

Aspects of good care were described in a traditional task orientated way by the majority of participants (8 out of 13).

“Good care goes hand in hand with quality of care. To me good care, as I said previously, means you ensure that they are happy, they're as healthy as you can make them, that they have adequate food, adequate fluids, that they are warm”(Ca5)

However, social aspects were also mentioned.

“if the client is more confident in themselves they are more likely to socialise. If the client is socialising, they are more likely to be in better form reducing the risk of developing depression or such in the future.” (Ca1)

Furthermore, the idea that the client should have a sense of ownership of their space was emphasised by several participants.

“Just bring something into it that makes it feel like they're not in a ‘home’, it's their home” (Ca6)

Being a good carer was often seen as hinging on positive motivation. Providing good care was seen as hard and not for everyone.

“I would like to say that if you are going to be a carer it really is not about money, it's a job that you really have to do properly. If you're going to be a carer you really have to devote your time and good caring to that person. It's a vocation rather than a job.” (Ca12)

The discussion of good care also yielded implicit mention of elements of person-centred care. While the ideas of PCC were not well expressed when asked about it, the discussion of what good care is implicitly suggested that the humanistic philosophy of respect, at the core of person-centred care, was considered important for good care.

“you've got to respect the person. Talk to them all the time, involve them in your daily life. Don't talk around them. If you're with somebody, don't just talk to them about what happened last night.” (Ca3)

The principle of personal autonomy which is a core factor in PCC was also acknowledged.

“…give them assistance with dressing, but only where needed. Encourage the person to do as much as they can for themselves.” (Ca1)

Furthermore, the PCC principle that carers should take the wishes of the client into account was expressed by several participants.

“I always ask them what they would like to wear. Involve them. Sometimes you have to judge by their reaction if they like this, not like that.” (Ca3)

Privacy and dignity was considered paramount for carers when dealing with clients

“Ask them for permission and ensure they have their privacy and dignity, if there has to be curtains closed because there's another resident in the room.” (Ca7)

Dementia care in practice

All the carers interviewed in this study were aware that caring for people with dementia is different from caring for any other group of clients. In their views, skills like appropriate communication, empathy, reliability, flexibility, kindness, patience and courtesy are particularly important to approach and work together with clients with dementia.

Communication issues were brought up by all participants, with frequent references to communication barriers. These were perceived as the origin of behavioural problems, due mainly to the client feeling frustrated when unable to express their needs. Good communication was seen as a way to reduce levels of confusion and agitation, to prevent behavioural problems.

“if you have got to assist a resident with dementia to get washed and dressed you have to make sure they understand this is what is going to happen, where if you don’t, that person is not going to understand why you are trying to remove their clothes and can become very upset and distressed because of that” (Ca 1)

The importance of nonverbal communication was often highlighted, with carers interpreting and responding to movements, smiles or looks.

“… they can’t unfortunately ask you what they want. So sometimes you have to go by their expressions, their facial expressions, the way they move, to their certain needs.” (Ca 3)

An interesting point about communication is that all carers mentioned talking to residents, explaining everything step by step and the importance of good communication, but they rarely mentioned the word “listen”.

“They will need reassurance, they will need a good carer, they will need a listener” (Ca 2)

The relationship between client and carer was discussed in detail. In a nursing home, the carer is the one who assists, helps, reassures and takes part in daily activities. How can the carer build a relationship? Which ways are available for that? What is the aim of that?

“Knowing what they like, what they don't, a little about their history. It's very good to know if somebody didn't like something, you don't talk about it. Or what they worked at.” (Ca6)

Participants found it important to create a bond through routine interactions with the same carer.

“…if so that can be a great bonding experience as well where you can build up a trust, a relationship with the person which even with somebody with dementia, in my experience, they may not recognise you day to day but you are still able to develop a bond with them.” (Ca1)

Characteristics of clients with dementia were often discussed, in particular in relation to communication problems and behaviour challenges. Behaviours like wandering, aggression or paranoia were mentioned and also loss of memory.

“The people with dementia can be very aggressive or happy or the can just keep asking the same questions over and over again because they can't remember what happened 2 minutes ago.” (Ca12)

Carers highlighted that dementia care can be time consuming and that each client is different and therefore their approach will be also have to be different.

“I think it's important to deal with every resident individually, there's more than one type of dementia. The same thing won't work for everybody.” (Ca3)

Overall, participants came across as confident in their approach to dementia and displayed considerable insight in aspects of communication, bonding and the need for knowledge of the clients’ background to the ensure the delivery of good care.

Sources of pressure

Staff factors that arose in the interviews were professionalism, knowledge and capabilities of colleagues.

“you must ensure that the people working with you are competent, and that they know what they are doing…” (Ca1)

The importance of team work was seen as paramount for carers. If everybody works together better care can be provided. Participants highlighted that they learn from each other and give support in the job during difficult moments. Personal limitations of staff members were seen as impinging on team functioning.

“If you get people that are not working together as a team, if you get people who are not working hard, you have to make up for that other person. So your time is gone. If not everyone does their bit, and we don't all work together, time goes quickly and you're chasing your tail all day” (Ca3)

Organisational factors were frequently brought up by the participants, in particular to indicate constraints to the provision of good care. The majority were most concerned about time and staffing constraints. They explained that carers need time to explain the same thing many times during the same day. Also, dealing with client’s mobility problems or challenging behaviour is very time intensive. While there is pressure on the one hand to make time for this, there is usually a strict time schedule that needs to be adhered to. Often priority is given to the timetable rather than to accommodating clients’ needs.

“I think issues you could face could be if you don't have enough time, or you're on a tight schedule. I think especially with residents with dementia you can't have a set schedule.” (Ca9)

They were not prompted on this, but nonetheless participants unanimously and spontaneously agreed that more staff is necessary to provide optimal care in a dementia ward.

“…lack of staff, trying to get people up at a certain time, it's not like an old person factory, it’s a nursing home. But some people see it like a factory. Timing you the whole time. And if you don't have the amount of staff you need, caring will go down.” (Ca12)

As it has been mentioned before, the job of care assistant is physical and mental draining. Some of the carers suggested that salary issues constitute a problem and make staff unhappy.

“I think that carers are very undervalued, undervalued because they are not really listened to. Their pay is rubbish. That goes to show you how undervalued we are as well. The amounts of hours we work are ridiculous. I just think that management should actually step up and see the work that we do. It' ok to say ‘you did a great job’, show us. Give us a pay rise, show us you appreciate us. Monetary value means a lot more than being told ‘you did great’.” (Ca5)

Client factors were a recurring cause for concern in the interviews. Care assistants reported that the biggest challenge for them was to deal with clients with challenging behaviour. According to Jenkins and Lovell (1997) and Franz, Zeh, Schablon, Kuhnert, and Nienhaus (2010), this situation makes staff more anxious, unhappy and less satisfied with their job. It also has serious consequences for clinical practise and quality of care (Schmidt, Dichter, Palmer, & Hasselhorn, 2012).

“Sometimes the wrong kind of people are in together. I think there are different kinds of dementia and I think some of the people we have here would be psychiatric, and I think it doesn't suit the floor they are on and can ruin it for others. It disrupts everything” (Ca6)

Family factors were also mentioned as an additional source of pressure. Working in a nursing home means that on top of dealing with the client there is a need for close contact with the family. Every family is different but unfortunately issues might arise with some of them due to a variety of reasons. They may not have appropriate knowledge about dementia and it is hard to understand for them the situation of their loved one. They may be inclined to give instructions to carers to do something for the relative that is not suitable for them (walking, eat any kind of food, etc). This situation can create conflicts between staff and relatives and stress both sides.

“With people with dementia you need to think for them. And you have to think correctly because you might upset them in some way or a family.” (Ca7)

Discussion and implications

As with all qualitative studies, results should be interpreted with caution and are not meant to be generalised. The limitations include the small size of the sample and the recruitment of participants from only two nursing homes. Nonetheless, the openness with which the participants expressed themselves and their motivated efforts to inform the researcher without defensiveness have provided us with insights that will be of interest to dementia care professionals and organisations in general. Furthermore, the issues that have been raised are undoubtedly reflective of issues around PCC implementation elsewhere in Ireland, because education of care assistants in Ireland is standardised (but perhaps also in other countries).

The most prominent finding in the study is that while all participants had received formal training almost all of them were found lacking in training and knowledge of PCC. Even those who had heard of it had vague or incorrect notions of what PCC really enticed. In itself this could be considered rather damning evidence, in the sense that it is hard to see how a philosophy of care can be implemented without relevant knowledge in those who actually provide the care, i.e. the care assistant. On the other hand, when carers discussed what they considered to be good care, they frequently included aspects of PCC. This suggests that at least a degree of implicit knowledge about PCC had permeated in their understanding of good care in practice. This finding is substantiated by Kontos and Naglie (2007), who claimed that many carers use PCC ideas by intuition. Participants also expressed the opinion that the most valuable training is in what happens in practice, a conclusion also drawn by Venturato, Moyle, and Steel (2011). This combination of intuitive learning and a preference for practice based learning is all too common, and somewhat worrying because the literature suggests that without explicit training in PCC, carers are at risk of limiting their care to the delivery of task oriented service only (Skaalvik, Norman, & Henriksen, 2010; Venturato, Moyle, & Steel, 2011). The latter is also reflected in our findings, with many task based aspects of care highlighted.

In contrast with the limited knowledge of PCC, participants expressed themselves confidently about several aspects of dementia. However, mostly negative aspects were mentioned, such as behaviour problems, lack of communication or memory loss. This is of course in line with the debilitating reality of dementia (Brodaty, Draper, & Low, 2003; Kada, Nygaard, Mukesh, & Geitung, 2009), but if a PCC approach had been taken into account (even if only in an intuitive way) we would have expected to hear a somewhat more balanced approach, in which remaining abilities, personality and humanity would also have been more prominent.

Another matter of concern is that while participants in the study recognised the importance of communication, ‘good listening’ one of the cornerstones of PCC, was left virtually unmentioned. As Brooker (2004) affirms, only by listening to the voice of people with dementia will it be possible to see the world from their perspective. While communication will allow to create a good relationship between client and carer (Bradford Dementia Group, 2009; Kitson et al., 2012), providing person-centred care requires knowledge of a client’s past, preferences, hobbies, etc. (Schweitzer & Bruce, 2008). Without effective listening it is impossible to acquire this information.

More than anything, the findings point out that there is a need to assess and most likely improve the training the care assistants received. If their responses are representative of the general situation in Ireland, they suggest that the standard training (Healthcare Support) may need to be updated in terms of its presentation of PCC. Smythe, Bentham, Jenkins, and Oyebode (2013) emphasised the need to systematically evaluate and follow up on training programmes in order to find out whether training matches the needs of care assistants and clients. Such an approach would seem necessary for the training programmes the participants in this study received. Benefits of good training are most likely perceived not only in quality of care and the relationship between client and carer (Coleman & Medvene, 2012), but also in increased job satisfaction (Edvardsson, Fetherstonhaugh, McAuliffe, Nay, & Chenco, 2011). Perhaps the preferences of participating care assistants for learning on the ward could be taken into consideration to inspire the development of on the job training in PCC. In tandem with this, the role of senior care assistants could be further developed to incorporate translating PCC principles into practical dementia care and promoting their implementation by staff. Specifically, Røsvik, Brooker, Mjorud, and Kirkevold (2013) point out that leadership in the ward plays an important role in overcoming barriers to the implementation of PCC. Although it would seem that there is a need for generic training in PCC and its ethos, it may also be necessary to deconstruct it into its composite parts and provide skills development modules which highlight, for instance, listening. To conclude this discussion, it is important to address the challenges carers said they faced, in particular behavioural problems, aggression, wandering or confusion (also highlighted by Edberg et al., 2008). Moreover, the participants highlighted that they had to follow a timetable which did not allow for time consuming digressions when seeking a (person-centred) response to such challenges. Overall, they felt that time pressure interfered with the quality of care. Some participants expressed the opinion that management do not always know what is happening on the ward and that communication is poor. These issues, which are well recorded in the literature (Beer et al., 2009; Rooij, Luijkx, Declercq, Emmerink, & Scholes, 2012; Venturato et al., 2011; Yun-Hee et al., 2012), add to the explanation of why an important philosophy of care advocated by management, such as PCC, is so poorly represented in the reality of care workers. Nonetheless, creative, energetic and empowered care assistants should be able to see ways of affecting care routines to incorporate person-centredness, and communicate their efforts and the reasons for it to management. However, proper training will have to come first, and perhaps as Røsvik et al. (2013) suggest, supervision, coaching and more training.

Conclusion

The findings of this study demonstrate a lack of specific training and explicit knowledge of PCC in care assistants in two Irish nursing homes with a PCC philosophy. While there were signs of implicit knowledge of PCC and knowledge of dementia care was confidently articulated, participants expressed themselves predominantly in ways that were not representative of the PCC approach and ethos. References to time pressure and limited staffing resources coincided with the observed disparities between care philosophy and actual practices as perceived by care assistants. The issues discussed in this paper are reflected in the literature, while the findings, particularly concerns about the training aspect of PCC, may have parallels in nursing home care elsewhere. Within Ireland the findings are more broadly relevant because all care assistants essentially receive the same training.

Footnotes

Acknowledgements

The authors want to thank all care assistants for their participation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Jordi Colomer is an Occupational Therapist. He has a particular interest in dementia care and is currently employed in a nursing home. When undertaking his MSc in Dementia he focused his research on person-centred care. Previously in Spain he provided care to people with intellectual disabilities. Email: colomerj@tcd.ie.

Jan de Vries is a lecturer and researcher in psychology. His psychology teaching and supervision activities are currently mostly focused on undergraduate and postgraduate nursing education, including gerontology nursing. He is involved in various research programme in mental health and health care interventions. Email: jan.devries@tcd.ie.

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