The Views of Domestic Staff and Porters when Supporting Patients with Dementia in the Acute Hospital: An Exploratory Qualitative Study

Abstract

There is increasing recognition that very many hospital patients have dementia but there are many concerns about the quality of care and support they receive. Consequently there have been numerous calls for hospital staff to have dementia training. While cleaning or domestic staff and porters form considerable parts of the hospital workforce they are infrequently considered in discussions of dementia care training and practice.

This exploratory study aimed to investigate the experiences of domestic staff and porters working in an acute hospital setting who are in contact regularly with patients with dementia. Semi-structured interviews were undertaken in 2016 with seven domestic staff and five porters in one English acute hospital to investigate their views and experiences. Data were analysed thematically by constant comparison technique and theoretical sampling. Themes were identified and realistic concepts developed.

Participants observed that caring attitudes and behaviour in their encounters with patients with dementia are important but challenging to put into practice. Several would have valued more information about dementia. Some noted situations in the hospital stay that seemed particularly difficult for patients with dementia such as travelling to different parts of the hospital for treatments.

The study suggests the need for improving the dementia-related knowledge and skills of all non-clinical staff especially those new to the NHS. The impact of witnessing dementia symptoms and distress on emotional well-being requires further research so that ancillary staff can improve the hospital stay of patients with dementia.

Keywords

dementia ancillary staff cleaners porters hospital well-being education training

Background

About two-thirds of hospital beds in the United Kingdom (UK) are occupied by older patients, many of whom have dementia. There is strong evidence that hospital staff find caring for these patients particularly challenging and family carers report dissatisfaction with hospital care (Alzheimer’s Society, 2009; Dewing & Dijk, 2014; Sampson, Blanchard, Jones, Tookman, & King, 2009). In UK hospitals almost all members of staff encounter patients with dementia who have distressing behaviours (Alzheimer's Society, 2009; Norman, 2006). Many admit feeling unprepared to manage these behaviours well and report lack of education about dementia (Burgess, Page, & Hardman, 2003; Norman, 2006). Taylor (2015) found that 17 NHS hospital Trusts routinely use security staff to manage patients with dementia who are distressed in wards. Freedom of information requests sent to 160 NHS hospitals revealed that of the 76 that responded only four had rejected the use of security personnel for these purposes.

This is despite the NICE/SCIE Dementia Guidelines (National Institute for Clinical Excellence/Social Care Institute for Excellence, 2006) recommending that dementia care training should be available for all staff working with older people and that hospitals should respond to the specific personal and social care needs of patients with dementia and their mental and physical health needs. Describing the experiences of nurses, Nolan (2007) argued that caring for patients with dementia can seem frustrating due to problems from the structural inadequacies of acute hospitals. Subsequent studies continue to highlight inadequacies in hospital care for patients with dementia (Cowdell, 2010; Sampson et al., 2009). Matters of concern include deficiencies in person-centred care, poor nutrition and lack of attention to patient dignity and respect (Alzheimer's Society, 2009; Turner, Eccles, Elvish, Simpson, & Keady, 2017). In England the National Dementia Strategy (Department of Health, 2009) included an objective to improve dementia care in hospitals. However, an audit by the Royal College of Psychiatrists (RCP) (2011) revealed persistent concerns including insufficient staff training and “unhealthy” environments, observing positive but also negative interactions with patients with dementia by cleaners and by porters amongst other staff (RCP, 2011, pp. 162–163).

Similarly, the 2012–13 National Audit of Dementia Care in General Hospitals (Royal College of Psychiatrists, 2013) recommended that hospitals should have a clear dementia pathway that is personalised from patient admission to discharge and that there should be clear outlines for improvement in dementia care. All staff should be dementia aware, receive role specific training amid a dementia friendly environment. The Dementia Action Alliance later sought formal hospital commitment to personalised dementia care as outlined in its Dementia Friendly Hospital Charter (Dementia Action Alliance, 2014). Despite this chorus of concern, the “Fix Dementia Care Hospitals” (Alzheimer's Society, 2016) survey found few staff understood dementia or the specific care needs of patients with a dementia; once more recommending training for the whole workforce (p. 17). One of the few studies that has evaluated a dementia and delirium two day training programme in one UK hospital for 48 staff from 12 job roles found that participants reported that their confidence, knowledge and patient management skills had improved. Of the 48 participants, two were “domestics” (cleaners) and one was a porter (Teodorczuk, Mutaetova-Ladinska, Corbett, & Welfare, 2014).

The work of domestics and porters in hospitals

The primary role of hospital cleaners is to undertake regular and predominately manual cleaning of the environment. Cleaning staff or domestic workers are found in all hospitals but surprisingly little research has focused on their encounters with patients. Indeed they are not mentioned in the Department of Health’s mandate to Health Education England (Department of Health, 2015). The motivations and job satisfaction of NHS cleaning staff in one UK acute hospital were explored as part of an evaluation of a newly introduced cleaning system (Jeanes et al., 2012). While the study did not focus on experience of working alongside patients with dementia, concerns about long-stay patients becoming dependant on the cleaners were raised, with the impact of this on cleaners’ ability to carry out their work in a timely manner being noted and of witnessing patient suffering. Although many cleaners perceived talking to patients to be a positive part of their job, this slowed down their work, and so some were not willing to talk to them. Cleaning a patient’s bed space was rated as difficult but some patients who had been in hospital for a longer time than others had built up a relationship with the cleaners and regularly sought their help with tasks. Additionally, cleaners sometimes provided information to patients and visitors.

Toynbee’s (2003a) book “Life in low paid Britain” reported her experiences of working as a hospital domestic and a porter. She found these staff had little recognition, the impact of illness and sadness on their well-being was not considered and she considered their talents and intelligence were disregarded and wasted (Toynbee, 2003b). The trade union Unison (Lister, 2005) later outlined the views of hospital domestic staff across 12 British hospitals. Some felt they were well treated alongside the rest of the team, yet others felt that they were treated badly, especially when working not for the NHS but for an outsourced private cleaning company. Many stated they loved patient contact but thought that their role should be better recognised.

A mixed methods study exploring the views of cleaning staff in a University Clinic in Germany (Jors, Tietgen, Xander, Momm, & Becker, 2017) found cleaners valued patient contact, seeing it as integral to not only keeping the environment clean but also supporting dying patients, warming their hearts and minds. This view was not shared by most of the other staff since 70% of them thought that cleaners just did cleaning. The researchers estimated that a cleaner was at the patient bedside for an average 10–20 minutes per day.

Indeed, Jenull-Schiefer, Mayr, and Mayring (2006) found some patients favouring cleaners to talk to and confide in as they felt on a more equal level with them rather than with professionals. Patients generally wished to discuss subjects such as the weather and family, but some openly appeared to want to discuss death and dying. This had a lasting impression on the cleaners but left some feeling helpless and burdened by their own mortality.

The work of hospital porters was recently examined by Fuller et al. (2010) in one NHS hospital. Porters’ tasks included round the clock patient transfers, moving blood products, taking bodies to the mortuary, changing gas bottles, and collecting specimens but often involved talking to people in many different parts of the hospital. They concluded that:

The porters place the patients at the centre of their work and many show aspects of job performance that go beyond the expectations or perception that may be held of such a worker within the Trust. The opportunity exists to involve the porters more meaningfully in the evaluation of their work and design of their role. Making greater use of the knowledge and ethical practices embedded within the daily work of the porters would assist greatly in elevating their perceived status and would be to the benefit of everyone involved, not least the patients. (p. 49)

Drawing on his nine months’ experience working as a hospital porter, Rapport (2004) reported that porters felt themselves to be very much at the bottom of a rigid hospital hierarchy.

Aims and objectives

In this context the present study was undertaken with the following aims and objectives:

To explore domestic staff’s and porters’ knowledge, attitudes and beliefs when supporting patients with dementia in hospital.

To identify and explore any specific difficulties or barriers they encounter in carrying out their daily work in supporting patients with dementia.

To explore the possible barriers to communication faced by domestic staff and porters when communicating with patients with dementia and their families.

To identity any possible unmet training and educational needs of domestic and portering staff.

Methods

This study adopted a grounded theory approach to understand the experiences of domestic staff and porters when in contact with patients with dementia in an acute hospital. This approach allows exploration when there is a gap in knowledge and helps in the understanding of patterns of behaviour (Glaser & Strauss, 1967).

Recruitment

A purposive sample was constructed of 12 domestic staff and porters in regular contact with patients with dementia within the in-patient ward areas of an anonymised hospital Trust that agreed to participate in this study. The manager of the cleaning and portering teams agreed to distribute study information sheets and consent forms. The aim was to recruit domestic staff and porters who had been in post for six months or longer so they were familiar with their jobs and who had regular contact with patients with dementia in ward areas, excluding, for example, those who worked in children’s services (see Table 1).

Eligible participants were interviewed face-to-face for approximately 30–60 minutes at their convenience. All interviews were held in an office on the ward; alternatives being offered but declined. Data collection took place in early 2016. Consistent with grounded theory data collection should only cease when data saturation has occurred (Markey, Tilki, & Taylor, 2014; Streubert & Carpenter, 2007). Morse (1995) recognised that despite quantity, frequency and repetition of ideas within a dataset there is no guarantee of saturation or adequacy of data. The themes identified in the interviews were comparable but the contribution of personal views and experiences added more individualised data.

Table 1.

Participant information (n = 12).

Variables	Number of participants
Gender
Female	9
Male	3
Age (years)
20–30	2
31–40	0
41–50	5
51–60	3
Over 60	2
Place of birth
UK born	11
Non UK born	1
Experience in working at the hospital (years)
<1	1
1–2	2
3–5	0
>5	9
Work setting
Assigned to one ward	5
Not assigned to a specific ward	7
Received dementia training	5
Not received dementia training	7

Semi-structured interviews were used permitting flexibility of questioning, enabling personal accounts to be reflected upon and reducing the risk of interviewer bias in the flow of the “questions” order. Some closed questions enabled comparison between participants (see Box 1). Some participants seemed enthusiastic in providing positive responses and measures were taken to instigate frank responses such as sharing the purpose of the study and its rationale. Interviews were conducted on the basis of informed consent which was clarified before each interview was arranged and re-confirmed at the interview’s start; confidentiality and anonymity were further assured before the interview (also addressed in the participant information sheet and consent forms) subject to the need to report any risk of harms. It was reiterated that the interview was not a test of dementia knowledge; there were no right or wrong answers and that participation was important due to limited research on the subject. It was re-emphasised that answers would not be shared with managers or be part of any performance reviews. Interviews were audio-taped with consent; field notes were made at the end of any contextual factors, such as an interruption which occurred during one interview. These were used to support the findings and encourage reflexivity.

Box 1.

Topic guide for semi-structured interviews.

• How long have you been working here?

• What do you do?

• Have you any previous experience maybe within your family or a neighbour or similar person who you know or think may have dementia?

• Caring for older people can be rewarding. Can you tell me about your experiences or something that has made you smile?

• Could you talk a little bit about your understanding of dementia or Alzheimer’s disease?

• Do you think in your current role you help support patients with dementia in the hospital? If yes, how do you do this?

• Could you tell me two things you think are important when caring for somebody with dementia, it doesn’t matter if you can’t think of any.

• Do you think there any differences in your work when caring for a patient with dementia compared to caring for a patient without dementia? If yes, please outline.

• Could you tell me about any recent time when you encountered a patient with dementia or whom you thought had dementia, what happened? If you have not done so recently that does not matter.

• Have you ever experienced any difficulties when caring for a patient with dementia in hospital – please describe.

• What did you do in this difficult situation?

• Did you ask for help and if so what happened?

• If you did not ask for help, why not?

• How do you think we might improve the care we give patients with dementia?

• Is there anything else you would like to add?

Analysis

All interviews were transcribed; familiarisation was gained by re-reading the initial transcripts alongside the field notes. Data were analysed, coded and categorised by emerging themes. In grounded theory data collection and analysis are described as iterative and interactive, iteration being the process of moving back and forth for comparison (Gerrish & Lacey, 2010). Analysis was carried out by using constant comparison methodology (Strauss & Corbin, 1988).

To enhance the validity of the data transcripts were sent back to two of the participants who had offered to check their own transcript for accuracy. Both confirmed they were content with their transcripts.

The study was approved by King's College London's ethics committee and by the Trust’s Research and Development Committee. A process model of consent (Milton, 2000) was used in which written consent was clarified along with verbal explanation at each interview to ensure a participant’s willingness to continue. All data were anonymised and stored securely to protect confidentiality. The participant information sheet stated that if poor or abusive practice was highlighted the researcher had a professional duty to potentially report any concern.

Findings

Data from the 12 interviews were incorporated in the analysis. In the quotations below the code D indicates a domestic worker or cleaner and P a porter. Eight major themes with their sub-themes emerged (see Box 2) and are supported by one or more illustrative quotation. Some touched up into two possible areas and this is noted in the brackets following each quote. The main themes that emerged covered:

Quality of care

Communication

Training

Emotional well-being

Contribution

Poor care – the reality of caring

What dementia means to me

Hard but valuable work

Box 2.

Key themes from data analysis.

Theme 1 – Quality of care – This included the environment, staffing levels, use of security staff to manage behaviour that challenges in dementia and the supervision of patients when leaving the ward to go for CT/X-Ray.

Theme 2 – Communication – This included working with colleagues and having the confidence to talk to professionals and patients.

Theme 3 – Training – this include participants’ views around the current training offered and also the impact training had on their work.

Theme 4 – Emotional Well-being – This included the impact of witnessing suffering in patients with dementia especially at end of life, the impact on the staffs’ well-being when witnessing poor care and the additional workload supporting patients with dementia in hospital sometimes had alongside their workload.

Theme 5 – Contribution to patient care and the ward.

Theme 6 – Poor care – the reality of caring.

Theme 7 – What dementia means to me – This included participants’ knowledge and understanding of dementia, their personal experiences and their thoughts around dementia as an illness.

Theme 8 – Hard but valued work – This included participants’ views around their job role, support from managers, ability to support patients with dementia in the acute setting and the value they perceived they had within the culture of the acute hospital in the NHS.

Quality of care

Four sub-themes emerged conveyed the participants’ feelings of quality care when seeing how patients with dementia were treated in hospital: the environment or ward culture; staffing levels, inappropriate use of security staff, and inadequate supervision of patients with dementia within the hospital.

Participants described variations within the hospital that seemed to them to reflect a supportive ward culture and strong team leadership or otherwise:

My ward is just not set up for it unlike Ward X; when I knew my Nan was going there I was happy. (participant 1) (D)

We’ve got cats and dogs here and lovely pictures on the wall. (participant 4) (D)

A few mentions were made of the ways in which ward leadership could affect patient care, drawing on the participants’ work patterns which meant that several were not assigned to one specific ward:

I have been to other wards and the atmosphere is not the same and the girls don’t seem as kind. (participant 11) (D)

Such differences in the culture of the ward was visible to participants as they worked:

we let visitors come in anytime especially the older ones, I know some of the nurses give them dinner also, it becomes like they are part of our care too, other wards don’t do that. (participant 2) (D)

The use of security staff was mentioned by the participants as being a way in which challenging behaviour regrettably needed to be managed sometimes, as a result of staff shortages:

They can’t help it it’s a horrible disease, security are on our ward all the time, I didn’t like the way they were with a man on our ward, he wore himself into an exhaustion he passed away in the end. (participant 1) (D)

There’s not enough staff to deal with the issues. (participant 9) (P)

Some participants observed that there were no arrangements to support the safety of vulnerable patients when they were being taken from their ward to other departments, such as when going for/having a CT (Computed Tomography) scan or X-ray. For the porters in particular this was a matter for concern:

A gentleman was there for ages; he got up and just wandered off in his underpants around the hospital. (participant 8) (P)

There have been people who fall. (participant 9) (P)

Communication

The theme of “communication” emerged from the transcripts as seeming to underpin some of the problems at work that were raised.

Several participants described their interactions with patients with dementia as being better when they had accumulated confidence and understanding:

Some people get very stressed, I’ve realised that when people see things they really do see things, I’m just learning how to help them to help us. (participant 4) (D)

You’ve almost got to humour them I think, talk to them nice and slowly, listen to what they want to tell you, it’s no good going off the deep end. (participant 8) (D)

Others gave examples of communications that appeared to portray a heightened understanding of patients with dementia:

Interviewer: Do you know the right way to respond when they ask over and again?

Participant: Yes you’ve got to imagine it’s the first time they have asked, just keep reassuring them. (participant 9) (D)

This management of emotions was mentioned by other participants in their communications with patients with dementia:

The most important things are the patients, but being patient, not getting frustrated ‘cos when you got someone constantly asking you the same question on the ward you know it gets a bit like, oh my God, but you got to be patient with them, it’s not their fault. (participant 2) (P)

All participants emphasised that ward areas were busy environments, some staff experienced relatives as being critical or demanding in their communications; often seemingly not noticing how busy the staff were. Some felt that patients preferred cleaning staff as conversation partners above clinicians.

Training

All participants voiced a need for more training – for both themselves and others. Five of the 12 had received brief dementia training that was judged valuable:

Not everyone understands I think we do because we went for a quick course. (participant 4) (D)

It might help some of the other porters who just don’t seem bothered with it. (participant 8, category 3) (P)

Everyone that works in the hospital should have a lot of training. (participant 7) (D)

However, they maintained that training needed to be relevant to their work:

I would like to learn more especially around aggression and medication; we don’t know how to deal with it. (participant 1) (D)

There’s not enough experience what we get taught in the classroom doesn’t make sense until you have been on the shop floor. (participant 9) (P)

Emotional well-being

Participants described feeling sad, upset, challenged, scared, anxious and sorry for patients with dementia and their families. Several reported that patients and their relatives often shared a great deal with them about their personal life, their illness and suffering; such conversations could start attachments and lead to heightened emotions:

The thank you letter we got from W made me cry. (participant 5) (D)

For some their own family experiences around dementia enabled them to empathise with patients’ relatives but could impact on their own emotional well-being:

She was crying her eyes out and I knew exactly how she felt. (participant 1) (P)

In regard to death and dying both cleaners and porters described how the closer they became to a patient the more they felt their death was difficult to deal with:

I get attached to people and when they pass away, I think I was talking to them a while ago, I get angry with our bosses because they don’t see the other side. (participant 6) (D)

This contrasted with porters’ common experiences of taking bodies to the mortuary and the emotions this often provoked which seemed to be recognised as emotionally difficult by managers who did offer opportunities to talk.

A few described witnessing aggressive behaviour by patients with dementia that had frightened them:

I do fell a little bit uncomfortable, I did get grabbed a while ago but they don’t understand that you’re not going to hurt them. (participant 4) (D)

Some described the accumulations of stresses such as repetition and their effects on their work:

it can be challenging and frustrating especially if you are with them for like half an hour, I don’t know how the nurses do it up here all day it must drive you a little bit potty yourself. They repeat, repeat themselves it does have a draining effect on you. (participant 9) (P)

At a more fundamental level, one participant expressed their uncertainty about the futility of prolonging life:

I just don’t see why they can’t see they are keeping bodies alive. (participant 7). (D)

When asked if this participant felt they had witnessed associated patient suffering the response was “maybe”.

Contribution

Some participants seemed to draw a subtle distinction between their role and what they also did informally based on their experience of dementia care which one described as “their way of thinking”. Several examples were given by cleaners in particular of attempts to deliver what could be termed person-centred care in order to improve patient’s feelings of identity, inclusion, activity and comfort:

Me and a friend often sing when they (patients) get stressed – the old songs. (participant 4) (D)

Other participants expressed similarly positive views:

If you can make someone happy, I know everyone’s schedule is tight, but to come away thinking I’ve done my best that I could possibly do. (participant 4) (D)

You know we are not just cleaners we are your eyes and ears as well. (participant 5) (D)

Some participants spoke of the importance of feeling recognised and of their sense of achievement from their work, although one indicated this was not universally shared:

It’s the little things we do it can be the tiniest thing ever that they have waited so long for the nurses to do. (participant 1) (D)

I know I shouldn’t be changing their pads and things, I take them to the loo (toilet), Bless them we are here to look after them, I know some of the others don’t think that way. (participant 7) (P)

Participants provided examples of how they were able to improve care outside their essential tasks:

She was talking to me and I was mopping, she forgot her name and said I don’t know who I am and I went and she asked what my name was and I sat with her and was telling her about my family and she told me about hers, then it came back to her; in the end she said I was so lovely, it made me feel sad but it was a good thing. (participant 3) (D)

However one participant, a porter, exceptionally reported a wish to distance themselves from patients with dementia:

I cannot be bothered with it all, I have enough of it at home, I just switch off. (participant 10) (P)

Poor care and the reality of caring

The data suggest that some staff have well-defined personal philosophies around caring for people with dementia. These were often centred on intrinsic beliefs rather than specific knowledge or education. The majority identified philosophies that originated from personal values so found instances of poor quality care and organisational culture hard to reconcile with their espoused efforts.

This theme of poor care touched upon lack of recognition of personhood or person-centred care. Limited individual attention to patients as reflected in examples of poor care was troubling but many participants expressed sympathy with colleagues they perceived to be over-worked and regarded deliberate poor practice as exceptional:

It distressed me when I see them having to wait because we don’t have enough nurses. (participant 1) (D)

I have witnessed poor care but looking back it’s probably because they were tired and snappy. (participant 4) (D)

What dementia means to me

Participants described rich and varied understandings of dementia, with some interpreting behaviour that could have been viewed as intentionally abusive as part of the condition:

There was a gentleman who was rude and suggestive but I understood he had a problem with his frontal lobe. (participant 5) (D)

Experience rather than specific training appeared to help with patient interactions, reducing challenges or misunderstandings:

They’ve lived through more than we understand, I’ve realised if they say somebody is going to shoot me then that’s real for them. (participant 4) (D)

A gentleman this morning said I want to check out those parcels, instead of saying there are no parcels, I’ve learnt you can’t argue with them or disagree. (participant 5 7) (D)

I’ve learnt a lot, not to wash the floor when they are wandering, people when they repeatedly ask for their mummy I just say ‘do you love your mummy?’. (participant 2) (D)

However, other participants expressed powerful views about the devastation of dementia:

I would rather die from anything else. (participant 1) (D)

It’s like there’s a temple standing there but it’s not the person, their soul’s just gone somewhere else. (participant 1) (D)

Hard but valuable work

There was an overwhelming sense that the majority of participants considered they had a real purpose and took pride in their work. Many described job satisfaction and ascribed this to feeling part of a team:

It’s the people we are all in the same boat, if you have a good bunch of people around you then it makes a difference, I know the staff on this ward rally round for each other. (participant 9) (D)

Even though you have your moans and whatever else, I enjoy my job and I feel like I can go home thinking I have made a difference. (participant 4) (D)

All reported knowing what was expected of them in their job but objective and immediate feedback, unless negative, was largely absent. For example, the cleaners reported directly to domestic supervisors, but some felt that their managers insufficiently understood the problems they encountered when cleaning and coming into contact with patients with dementia:

Managers don’t understand our contribution or how demanding it can be. (participant 6) (D)

Overall findings

The analysis revealed several challenges but also much that is positive for domestic staff and porters when working alongside patients with dementia. Some examples of good human resource and management practice were reported and several felt that they went above and beyond their role in supporting patients with dementia. Participants appeared eager to develop their skills and would welcome more training as long as it prepared them for the “real world” of their work. Concerns included staff shortages and the use of security staff to manage patients’ challenging behaviour on the wards. Specific problems of sending confused patients to other parts of the hospital for scans and X-rays were reported.

Discussion

Limitations

This exploratory study investigated the experiences of a small group of domestic staff and porters working alongside patients with dementia in a hospital setting. There are however limitations. First, the ethical committee required that a gatekeeper had to circulate the study information to potential participants; this may have led to some bias or reluctance to participate. It should be noted that these staff had little or no access to NHS email so electronic recruitment would not have been possible. Second, the study was small scale and took place in one District General Hospital. Findings may not be generalisable to other hospitals. Third, despite assurance of confidentiality, some potential participants may have felt unsure about sharing their views or experiences. Fourth, socially acceptable responses could have been provided as it was evident that the researcher had particular interest in dementia care. Additional fieldwork using an ethnographic approach to supplement the interview data may have added to understanding by capturing actual interactions; this might usefully be undertaken in future studies which could also explore patient perspectives.

The findings in context

The findings reveal commonalities between the cleaners’ and porters’ experiences of work with patients with dementia. There is growing recognition of the impact of a supportive environment, alongside pharmacological and behavioural approaches, on care and treatment for patients with dementia in care homes (Waller & Masterson, 2015; Zeisel et al., 2003). Transferring this to hospital settings the King’s Fund worked with 26 hospitals to support and design more dementia friendly hospital environments. Both the Royal College of Psychiatrists’ “Audit of Dementia Care in Hospitals” (Royal College of Psychiatrists, 2013) and the Royal College of Nursing’s “Commitment to the care of people with dementia in general hospitals” (Royal College of Nursing, 2011) have acknowledged the critical influence of the physical care environment. Hospitals are busy often confusing places with lots of activity and noise which for a patient with dementia can be frightening, disorientating and increasingly overwhelming (Cunningham, 2006; Thompson & Heath, 2013).

Recommended strategies for making environments more dementia friendly include clear signage, contrasting colours on frames around windows and doors and reduced noise and a need for purposeful activity (Bray, Evans, Bruce, Carter, Brooker, Milosevic, & Robinson, 2015). Participants in this present study commented that the environments varied and often seemed to depend on the ward leadership or culture. They highlighted difficulties when people with dementia were experiencing hallucinations or confused and how they managed these. Their own efforts in trying to reduce anxiety among patients and relatives were felt to be under-recognised. Despite the contextual limitations of their roles some participants seemed to aspire to uphold personhood. This was described eloquently by several participants in their attempts to understand the needs of the person with dementia and to react appropriately.

As part of a hospital improvement programme of dementia care evaluated by Brooker, Milosevic, Evans, and Carter (2014) some case illustrations mentioned porters and security staff in Accident and Emergency departments being included in training about the needs of patients with dementia, particularly those displaying behaviour that may challenge staff. These staff received information around the impact of changing environments on a patient with dementia. Porters and security staff who had completed additional training reported feeling better integrated within the clinical team and felt empowered to question other staff as to whether it was right to move a patient. Other studies have reported a greater understanding of dementia and the effect of changes to the environment following training (Robinson, Longden, & Murphy, 2015; Teodorczuk et al., 2014).

Communication underpinned many of the findings of this study. The ability to communicate with patients with dementia was identified by some participants as difficult but examples of informed attempts to do the right thing (such as acknowledging hallucinations) were given.

Both porters and cleaning staff valued their contact with patients and saw this as an integral part of their work. This may partially assuage Toynbee’s (2003a) and Rapport’s (2004) personal observations that many low paid workers such as domestic and porters feel neglected (Toynbee, 2003a). When describing the views of domestics and porters, Mack, Froggatt, and McClinton (2003) stated that professional colleagues did not always value these workers’ contributions to patient care. According to some of the staff interviewed in this present study, their work is not only aimed at a maintaining a clean hygienic environment but also at ensuring patients are supported especially when nurses are busy, by trying to keep patients safe, and treating them with kindness and encouragement. This resonates with a study of the views of secretaries and housekeepers (termed support staff) working on an oncology unit who likewise saw their role as encompassing emotional support (Schulman-Green et al., 2005). Similarly, staff in a qualitative study (Jors et al., 2017) exploring the views of hospital cleaning staff in Germany eloquently described examples of supporting personhood by seeking to take dying patients’ minds off their situations. Another qualitative study in a cancer centre in Boston US, again exploring the views of support staff (medical assistants, nursing assistants, phlebotomists, office assistants and telephone operators), found they struggled to find the “right” words to provide comfort when confronted with discussions of death and dying (Cashavelly et al., 2008) but nonetheless attempted to provide comfort. While this study does not identify specifically if patients with dementia were included, it may resonate in dementia care given that dementia is a neurodegenerative condition often requiring palliation at end of life.

There is limited research into the morale and well-being of domestic staff and portering staff despite their large numbers and contributions to hospitals’ smooth and effective running. Healthcare organisations are increasingly conceptualised as complex, indivisible entities made up of web-like networks of staff who connect with each other in changeable ways (Bunniss & Kelly, 2013), with spontaneous team forming and inter-professional learning needed as a response to ever-changing patient needs. These may go some way to address the unpredictability of team spirit at times of staffing problems and organisational frustrations and constraints, and be one way to support compassion and improvement efforts. If they are confined to clinical staff opportunities will be missed to improve patient, relative and staff experiences.

Implications and future work

Given the widespread prevalence of dementia among hospital patients (Fong et al., 2012), dementia care skills are essential across the workforce. Improvements may need to be made in the availability of relevant dementia training for all ancillary staff, especially those new to the work to incorporate topics such as supporting patients by acknowledging their personhood, supporting them in distressing or challenging behaviour and enhancing patient and staff emotional wellbeing. All these needs were highlighted by the participants in this present study and are supported by other research focussing on the nursing workforce (Bray, Evans, Bruce, Carter, Brooker, Milosevic, & Woods, 2015; Robinson et al., 2015). Roles and responsibilities in responding to distressing or challenging behaviour on the wards should be understood and this present study suggests that particular efforts are needed to ensure the safety and wellbeing of patients with dementia when temporarily leaving the ward areas.

In acute care nurses face multiple demands and may feel unable to meet the needs of patients with dementia (Fukuda, Shimizu, & Seto, 2015) on their own. The role of ancillary staff is important in supporting their clinical colleagues. However, there may be particular difficulties in joining up arrangements where domestic staff are outsourced to private companies; in such circumstances they will have different line management from nurses and other healthcare staff and may be moved between work settings as their employer desires (Zuberi, 2013). Concerns about the outsourcing of hospital cleaning have generally focused on the implications for patient safety (see Toffolutti, Reeeves, McKee, & Stuckland, 2017) and have not explored other patient contacts and ward ethos. Researchers should be alert to the influences of employment status when studying work-place interventions.

Conclusion

This paper has presented domestic staff and porters’ experiences of being able to recognise their ability to influence good care of patients with dementia in an acute hospital. The findings suggest that caring and respecting personhood in dementia care are important to many but challenging for some. Despite the contextual limitations of the hospital those interviewed seemed to feel encouraged by their attempts to support personhood and thought this added value to their work. Many participants viewed their work as meaningful despite its frequent difficulties and their low status. The findings indicate a need to improve the knowledge and skills of all non-clinical staff especially those new to the work that may experience particular challenges. The impact of staff witnessing what seems to be suffering or poor practice requires further action and research.

This exploratory study has elicited rich, personal descriptions of the experiences of domestic staff and porters working with patients with dementia. The findings suggest that there are ways in which pressures can be mitigated in order to encourage compassionate care not only for patients but for staff.

Footnotes

Acknowledgements

The authors thank those participating in this study and their managers for their assistance with recruitment. The views in this article are those of the authors alone and should not be interpreted as necessarily those of the Department of Health or the NHS.

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) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: CA is grateful to the NHS for funding her post-graduate studies at King’s College London. JM is funded by the Department of Health’s Policy Research Programme.

Caroline Ashton is a clinical ward manager at the Princess Alexandra Hospital supporting patients whose care is complex. The ward received the Quality Mark for Older People’s Nursing awarded by the Royal College of Psychiatry in 2016. She has also worked as a palliative care clinical nurse specialist and actively supports research into practice as part of her professional role.

Jill Manthorpe is a professor of Social Work at King’s College London and Director of the Social Care Workforce Research Unit, a Department of Health Policy Research Unit. She has a wide range of research interests covering the adult social care workforce, risk and safeguarding and practice and policy including work with people with dementia and carers.

References

Alzheimer's Society. (2009). Counting the cost. London: Alzheimer’s Society. Retrieved from www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=356.

Alzheimer's Society. (2016). Fix dementia care: Hospitals. London: Alzheimer’s Society. Retrieved from www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2907.

Bray

Evans

Bruce

Carter

Brooker

Milosevic

Robinson

(2015) Improving the hospital environment for people with dementia. Nursing Older People 27(9): 18–20. DOI: 10.7748/nop.27.9.16.s17.

Bray

Evans

Bruce

Carter

Brooker

Milosevic

Woods

(2015) Enabling hospital staff to care for people with dementia. Nursing Older People 27(10): 29–32. DOI: 10.7748/nop.27.10.29.s21.

Brooker

Milosevic

Evans

Carter

(2014) RCN Development Programme: Transforming dementia care in hospitals evaluation report, Worcester: University of Worcester.

Bunniss

Kelly

D. R.

(2013) Flux, questions, exclusion and compassion: Collective learning in secondary care. Medical Education 47(12): 1197–1208. DOI: 10.1111/medu.12281.

Burgess

Page

Hardman

(2003) Changing attitudes in dementia care and the role of nurses. Nursing Times 99(38): 18–19.

Cashavelly

B. J.

Donelan

Binda

K. D.

Mailhot

J. R.

Clair-Hayes

K. A.

Maramaldi

(2008) The forgotten team member: Meeting the needs of oncology support staff. Oncologist 13(5): 530–538. DOI: 10.1634/theoncologist.2008-0023.

Cowdell

(2010) The care of older people with dementia in acute hospitals. International Journal of Older People Nursing 5(2): 83–92. DOI: 10.1111/j.1748-3743.2010.00208.x.

10.

Cunningham

(2006) Understanding challenging behaviour in patients with dementia. Nursing Standard 20(47): 42–45.

11.

Dementia Action Alliance. (2014). Dementia-friendly hospital charter. London: Dementia Action Alliance. Retrieved from www.dementiaaction.org.uk/assets/0001/2728/Draft_DAA_Dementia-Friendly_Hospital_Charter_141014.pdf.

12.

Department of Health (2009) Living well with dementia, a National Dementia Strategy, London: Department of Health.

13.

Department of Health (2015) Delivering high quality, effective, compassionate care: Developing the right people with the right skills and the right values: A mandate from the Government to Health Education England: April 2015 to March 2016, London: Department of Health.

14.

Dewing

Dijk

(2014) What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia – International Journal of Social Research and Practice 15(1): 106–124. DOI: 10.1177/1471301213520172.

15.

Fong

T. G.

Jones

R. N.

Marcantonio

E. R.

Tommet

Gross

A. L.

Habtemariam

Inouye

S. K.

(2012) Adverse outcomes after hospitalization and delirium in persons with Alzheimer disease. Annals of Internal Medicine 156(12): 848–856. DOI: 10.7326/0003-4819-156-12-201206190-00005.

16.

Fukuda, R., Shimizu, Y., & Seto, N. (2015). Issues experienced while administering care to patients with dementia in acute care hospitals: A study based on focus group interviews. International Journal of Qualitative Studies on Health and Well-Being, 10. DOI: 10.3402/qhw.v10.25828.

17.

Fuller, A., Laurie, I., & Unwin, L. (2010). ‘Learning at work’ in the Portering Department: Research Report to Southampton University Hospitals Trust. Southampton: University of Southampton. Retrieved from http://eprints.soton.ac.uk/192409/1/Learning_at_Work_in_the_Portering_Department_ISBN_9780854329144.pdf.

18.

Gerrish

Lacey

(2010) The research process in nursing, Oxford: Blackwell.

19.

Glaser

B. G.

Strauss

A. L.

(1967) The discovery of grounded theory: Strategies for qualitative research, New York: Aldine de Gruyter.

20.

Jeanes

Hall

T. J.

Coen

P. G.

Odunaike

Hickok

S. S.

Gant

V. A.

(2012) Motivation and job satisfaction of cleaning staff in the NHS: A pilot study. Journal of Infection Prevention 13(2): 55–64. DOI: 10.1177/1757177412438452.

21.

Jenull-Schiefer

Mayr

Mayring

(2006) Behind each door you will find death: Institutionalized dying. Zeitschrift Fur Gerontologie Und Geriatrie 39(4): 308–314. DOI: 10.1007/s00391-006-0333-2.

22.

Jors

Tietgen

Xander

Momm

Becker

(2017) Tidying rooms and tending hearts: An explorative mixed-methods study of hospital cleaning staffs experiences with seriously ill and dying patients. Palliative Medicine 31(1): 63–71. DOI: 10.1177/0269216316648071.

23.

Lincoln

Y. S.

Guba

E. G.

(1985) Naturalistic inquiry, Beverley Hills, CA: Sage.

24.

Lister, J. (2005). Cleaners voices: Interviews with hospital cleaning staff. London: London Health Emergency and Unison. Retrieved from www.healthemergency.org.uk/pdf/CleanersVoices.pdf.

25.

Mack, H., Froggatt, K., & McClinton, P. (2003). “A small cog in a large wheel”: An exploratory study into the experiences of porters, ward clerks and domestics working in an English Cancer Centre. European Journal of Oncology Nursing, 7(3), 153–161. DOI: 10.1016/s1462-3889(03)00028-0.

26.

Markey

Tilki

Taylor

(2014) Reflecting on the challenges of choosing and using a grounded theory approach. Nurse Researcher 22(2): 16–22. DOI: 10.7748/nr.22.2.16.e1272.

27.

Milton

C. L.

(2000) Informed consent: Process or outcome? Nursing Science Quarterly 13(4): 291–292. DOI: 10.1177/08943180022107988.

28.

Morse

J. M.

(1995) The significance of saturation. Qualitative Health Research 5(2): 147–149. DOI: 10.1177/104973239500500201.

29.

National Institute for Clinical Excellence/Social Care Institute for Excellence (2006) Dementia: Supporting people with dementia and their carers in health and social care, London: National Institute for Health and Clinical Excellence (NICE) and Social Care Institute for Excellence.

30.

Nolan

(2007) Caring for people with dementia in the acute setting: A study of nurses' views. British Journal of Nursing 16(7): 419–422.

31.

Norman

(2006) Observations of the experience of people with dementia on general hospital wards. Journal of Research in Nursing 11(5): 453–465.

32.

Rapport

(2004) From the porter’s point of view. In: Rapport

(ed.) New qualitative methodologies in health and social care research, London: Routledge, pp. 99–120.

33.

Robinson

Longden

Murphy

(2015) Transforming dementia care in an NHS trust. Nursing Older People 27(1): 18–23. DOI: 10.7748/nop.27.1.18.e640.

34.

Royal College of Nursing (RCN). (2011). Commitment to the care of people with dementia in general hospitals. London: RCN Foundation. Retrieved from www2.rcn.org.uk/__data/assets/pdf_file/0011/480269/004235.pdf.

35.

Royal College of Psychiatrists. (2011). Report of the National Audit of Dementia Care in General Hospitals. London: Royal College of Psychiatrists. Retrieved from www.rcpsych.ac.uk/pdf/NATIONAL%20REPORT%20-%20Full%20Report%201201122.pdf.

36.

Royal College of Psychiatrists. (2013). In J. Young, C. Hood, A. Gandesha, & R. Souza (Eds.), National Audit of Dementia care in general hospitals 2012–13: Second round audit report and update. London: HQIP. Retrieved from www.rcpsych.ac.uk/pdf/NAD%20NATIONAL%20REPORT%202013%20reports%20page.pdf.

37.

Sampson

E. L.

Blanchard

M. R.

Jones

Tookman

King

(2009) Dementia in the acute hospital: Prospective cohort study of prevalence and mortality. British Journal of Psychiatry 195(1): 61–66. DOI: 10.1192/bjp.bp.108.055335.

38.

Schulman-Green

Harris

Xue

Loseth

D. B.

Czaplinski

Donovan

McCorkle

(2005) Unlicensed staff members' experiences with patients' pain on an inpatient oncology unit – Implications for redesigning the care delivery system. Cancer Nursing 28(5): 340–347. DOI: 10.1097/00002820-200509000-00002.

39.

Strauss

Corbin

(1988) Basics of qualitative research techniques and procedures for developing grounded theory, Thousand Oaks, CA: Sage.

40.

Streubert

S. H. J.

Carpenter

D. R.

(2007) Qualitative research in Nursing: Advancing the humanistic imperative, 4th ed. Philadelphia: Lippincott Williams and Wilkins.

41.

Taylor, R. (2015). The hospitals that employ security guards to restrain dementia patients. Mail Online. Retrieved from www.dailymail.co.uk/news/article-3067967/The-hospitals-employ-security-guards-restrain-dementia-patients-Untrained-staff-called-three-times-week.html.

42.

Teodorczuk

Mutaetova-Ladinska

Corbett

Welfare

(2014) Learning about the patient: An innovative interprofessional dementia and delirium education programme. The Clinical Teacher 11: 497–502.

43.

Thompson, R., & Heath, H. (2013). Dementia: Commitment to the care of people with dementia in hospital settings. London: Royal College of Nursing. Retrieved from www2.rcn.org.uk/__data/assets/pdf_file/0011/480269/004235.pdf.

44.

Toffolutti

Reeeves

McKee

Stuckland

(2017) Outsourcing cleaning services increases MRSA incidence: Evidence from 126 English acute trusts. Social Science and Medicine 174: 64–69.

45.

Toynbee

(2003a) Hard work: Life in low paid Britain, London: Bloomsbury.

46.

Toynbee, P. (2003b). Quality care means valuing care assistants, porters, and cleaners too. Quality & Safety in Health Care, 12(Supp1), i13–i15. DOI: thompson10.1136/qhc.12.suppl_1.i13.

47.

Turner

Eccles

F. J.

Elvish

Simpson

Keady

(2017) The experience of caring for patients with dementia within a general hospital setting: A meta-synthesis of the qualitative literature. Aging & Mental Health 21(1): 66–76. DOI: 10.1080/13607863.2015.1109057.

48.

Waller

Masterson

(2015) Designing dementia-friendly hospital environments. Future Hospital Journal 2(1): 63–68.

49.

Zeisel

Silverstein

N. M.

Hyde

Levkoff

Lawton

M. P.

Holmes

(2003) Environmental correlates to behavioral health outcomes in Alzheimer's special care units. Gerontologist 43(5): 697–711.

50.

Zuberi

(2013) Cleaning up: How hospital outsourcing is hurting workers and endangering patients, Cornell, US: Cornell University Press.