Introduction
The number of people in the United Kingdom (UK) living with dementia is estimated to be over 850,000 (Wittenberg et al., Reference Wittenberg, Hu, Barraza-Araiza and Amritpal2019) and this number is expected to nearly double by 2,040 (Prince et al., Reference Prince, Knapp, Guerchet, McCrone, Prina, Comas-Herrera, Wittenberg, Adelaja, Hu, King, Rehill and Salimkumar2014). In the UK, approximately 61 per cent of people with dementia, over the age of 65, are living in the community (Prince et al., Reference Prince, Knapp, Guerchet, McCrone, Prina, Comas-Herrera, Wittenberg, Adelaja, Hu, King, Rehill and Salimkumar2014). Care at home is fundamental to community care policy (Taylor and Donnelly, Reference Taylor and Donnelly2006) and there is an ongoing policy drive to increase the number of people able to remain in their own homes (Carter, Reference Carter2016). Whilst family carers may initially provide care for people with dementia (Polacsek et al., Reference Polacsek, Goh, Malta, Hallam, Gahan, Cooper, Low, Livingston, Panayiotou, Loi, Omori, Savvas, Batchelor, Ames, Doyle, Scherer and Dow2020), they often require, and instigate, additional support from paid homecare workers (Pollock et al., Reference Pollock, Wilkinson, Perry-Young, Turner and Schneider2021). Homecare workers provide help with washing, dressing, eating (Hayes and Moore, Reference Hayes and Moore2017), and essential physical, social and emotional support for older adults (Turner et al., Reference Turner, Schneider, Pollack, Travers, Perry-Young and Wilkinson2020).
As a workforce, homecare workers are most likely to work part time, often in isolation and to be female. They tend to be employed by care agencies and experience poor working conditions (Hussein and Manthorpe, Reference Hussein and Manthorpe2012) including zero hour's contracts and low pay (Hayes and Moore, Reference Hayes and Moore2017). McLean (Reference McLean and Williams2007) describes care workers as an overworked, socially devalued group, with Hayes and Moore (Reference Hayes and Moore2017) suggesting that the pay of private-sector homecare workers has at times been so low as to breach national minimum wage law.
Of the estimated 520,000 homecare workers who provided care for people with dementia in 2016, over a third had not received any training for dementia (Carter, Reference Carter2016). There is also a suggestion that the homecare workforce have poor access to dementia training (Polacsek et al., Reference Polacsek, Goh, Malta, Hallam, Gahan, Cooper, Low, Livingston, Panayiotou, Loi, Omori, Savvas, Batchelor, Ames, Doyle, Scherer and Dow2020) and inadequate supervision for their role, thereby potentially limiting their skills (D'Astous et al., Reference D'Astous, Abrams, Vandrevala, Samsi and Manthorpe2019). System and organisational factors such as these can be barriers to dignified care (All Party Parliamentary Group on Dementia, 2019).
Nevertheless, McLean (Reference McLean and Williams2007) suggests that homecare workers serve as ‘protheses’ helping to preserve personhood by treating the person with dementia as an individual conscious being with valid needs and wishes. McLean (Reference McLean and Williams2007) further argues that preserving personhood is an immense charge for anyone, let alone those who occupy the lowest rung of the care-giving spectrum. Homecare workers can face significant risks in the homes of their clients including health hazards, injuries associated with moving and handling, and verbal abuse and aggression (Taylor and Donnelly, Reference Taylor and Donnelly2006); whereas people with dementia can face different risks such as those related to cooking, medication use or falling (Sandberg et al., Reference Sandberg, Borell and Rosenberg2021). There can be few areas of practice more complex (Bailey et al., Reference Bailey, Clarke, Gibb, Haining, Wilkinson and Tiplady2013) and more difficult to cope with than managing risks in dementia care (Backhouse et al., Reference Backhouse, Penhale, Gray and Killett2018), with homecare workers experiencing levels of responsibility and decision making (Clarke, Reference Clarke2009) that are often hidden (Neysmith and Aronson, Reference Neysmith and Aronson1996).
Risk, uncertainty and decision making in dementia care
Decision making in a situation of uncertainty is a central activity for all those who provide health or social care for people with dementia. Beaumont (Reference Beaumont and Parsloe1999) considers risk and uncertainty to be deeply intertwined. The term risk can be used to describe two interrelated aspects of uncertainty: firstly, the threat it poses to individuals and, secondly, the strategies used to manage those threats (Alaszeweski and Coxon, Reference Alaszeweski and Coxon2009).
For health and social care professionals, identifying and managing risk often involves gathering, ordering and analysing information from a variety of sources (Ruston, Reference Ruston2004) and using their professional judgement in order to underpin decisions about need, risk and human rights (Taylor, Reference Taylor2006; Waugh, Reference Waugh2009). In this context, risk is viewed as an objective certainty that can be quantified, regulated and managed (Dickins et al., Reference Dickins, Goeman, O'Keefe, Iliffe and Pond2018).
In contrast, Douglas and Wildavsky (Reference Douglas and Wildavsky1983) suggested that risk is not an objective reality but rather a social, collective, subjective perception of danger and that different groups will have different ideas about what is dangerous depending on their shared experiential contexts. Here risk is intertwined with danger. Similarly, Lupton (Reference Lupton2013) describes risk as being virtual, a potential rather than realised threat or danger which involves visualising the consequences of an action or events that may need to be managed. Perceptions of risk and danger are shaped through the interaction with others, material objects and the environment (Lupton, Reference Lupton2013). Thus, when an individual weighs up risks they are deciding on how the risk phenomena fits with their values about what is acceptable and what is dangerous (Lupton, Reference Lupton2013).
Expert professional knowledge is often compared with lay knowledge and awarded a higher status (Baillergeau and Duyvendak, Reference Baillergeau and Duyvendak2016). However, Zinn (Reference Zinn2016) suggests that separating people into a rational domain of experts and non-rational domain of lay people understates the complexity and parameters of expert ‘rational’ decision making and neglects a whole range of in-between strategies, including trust, emotion, and the use of tacit or experiential knowledge to provide efficient ways to deal with risk and uncertainty.
The homecare sector experiences difficulties with recruitment, retention, funding and variation in the quality of provision (Bottery, Reference Bottery2019). Homecare clients with advanced cognitive impairment can pose unique challenges for homecare workers due to having high dependency, difficulties communicating (O'Brien et al., Reference O'Brien, Smuts, Fan, O'Sullivan and Warters2019), and changes in function and understanding (Abrams et al., Reference Abrams, Vandrevala, Samsi and Manthorpe2019). However, in homecare, responsibilities and decision making can be unseen (Taylor and Donnelly, Reference Taylor and Donnelly2006). Indeed, homecare workers often make decisions about risks and perceived danger in the context of limited training and varied supervision (Dickins et al., Reference Dickins, Goeman, O'Keefe, Iliffe and Pond2018). Thus, homecare workers as an undertrained, unregistered workforce fall somewhere between the expert professional and the lay person. This paper aims to gain an understanding of the ways in which homecare workers assess and manage risk whilst caring for people with dementia in their own homes.
Methods
Study design
The aim of the study was to improve our understanding of ways in which homecare workers experienced caring for people with dementia within their own homes. For this exploratory study, we used inductive semi-structured interviews.
Settings and participants
Twenty-four homecare agencies, which provided homecare for people with dementia and which were located within the boundaries of one clinical commissioning group in the East of England, were approached via telephone or email and invited to contribute to the study. Agencies that expressed an interest in their staff taking part were sent leaflets to be circulated to their homecare workers. Homecare workers who were interested completed an expression of interest form containing their contact details. They were then contacted by the research team who sent them information about the study and arranged a time and location for the interview to take place. All participants provided informed consent and signed a consent form. Seventeen sessional (not live-in) homecare workers from seven different homecare agencies were recruited.
Data collection
Interviews were conducted by AR, a female medical sociologist with over 20 years' post-doctoral experience of conducting research with vulnerable populations including patients, young and adult carers, refugees, people with head injuries and people with dementia. She has a public health background and has published widely in the field of risk and decision making, thus her research lens, probes and reflections on interviewee responses were likely to attend to notions of risk. The interviews were conducted at the main premises of homecare agencies or the homecare workers' homes early in 2020. An interview topic guide was used and included usual practice, personal care, training, knowledge and support. These themes were based on findings from a parent study (Pro-CARE) funded by the Alzheimer's Society, exploring care for people with dementia in a variety of settings. Interviews were one-time, face-to-face, semi-structured, audio-recorded and transcribed verbatim. Average interview length was 46 minutes (range 25–108). No field notes or member checking processes were used. A small honorarium voucher was given to participants as a thank you for their time.
Data analysis
We used inductive Qualitative Content Analysis (Elo and Kyngas, Reference Elo and Kyngas2008) since knowledge about homecare workers' experiences is limited and fragmented. This approach enabled us to move from the specific to the general so that instances of reported behaviours and experiences could be combined to more general statements about homecare workers' experiences. These in turn provided greater insights into devising potential solutions to the problems they faced in caring for their clients. Themes were identified by both authors following listening to audio recordings and examining transcripts to develop familiarity with the data. Initial themes were discussed, followed by further engagement with data, discussions and modification of themes. Text covering risk was identified and then combined into three general thematic areas: risk identification, risk management and system risks (a further two themes, structural conditions and client dementia-related characteristics in relation to providing personal care, are examined elsewhere) (Backhouse and Ruston, Reference Backhouse and Ruston2022). Risk themes were further examined in order to ensure strength of the thematic areas. The location of data under the themes of the client as a source of risk to the homecare worker, the client's home and behaviours as a source of risk to the client, and the wider system as a source of risk to both the client and the homecare worker generated, what we perceived to be, thorough data saturation. Both authors coded data using NVivo12. A meeting with family carers of people with dementia (who constituted the designated reference group for the wider research programme on dementia care and had some experience of employing homecare workers for their relatives with dementia) took place to discuss and examine the interpretation of these themes.
Ethics
The Queen's Square Research Ethics Committee (London) reviewed the study (IRAS reference: 251339) and gave a favourable ethical opinion.
Findings
One participant was male and the average age was 38 (range 21–65). Sixteen out of the 17 were White British and one was White German. Participants had been working with their current homecare agency for an average of four years (range seven months to nine years), with an average of nine years' experience of providing care (range 1–43 years).
Identifying and mitigating risks emerged as key features of participants' work with their clients with dementia. They framed risks in terms of risk that they and their clients faced in the client's home, as well as risks associated with their low status within the health and social care system. Framing is a narrative by which meaning is constructed out of observation and other client information, and is an essential component of judgement (Taylor, Reference Taylor2006). Whilst acknowledging expected risks associated with a caring role such as experiencing a bad back or being exposed to cigarette smoke, our participants did not mention these. Instead, their framing of risk suggested that caring for clients in moderate- to late-stage dementia posed specific risks not identified when caring for clients without dementia.
Risks to homecare workers – the client as a source of risk
Clients with dementia could pose a potential risk to homecare workers by accusing them of things they did not do, such as stealing:
…like she'll forget where she's put things and she'll ring up and she'll be like ‘the carers have took this’ and we have to reassure them like ‘oh no, actually, you put it in here’. (S15, 6 years' experience)
However, our participants spoke of expressions of anger ‘aggression' as the predominant source of risk they perceived from clients.
Participants reported experiencing both verbal and/or physical aggression as part of their day-to-day work with their clients. They described managing aggression as a normal, routine part of their job and as an inherent part of working with people with dementia:
I think [homecare workers] would probably think that it's them [that they are the cause of the aggression] and you have to sort of say ‘No, it's not you, this is just what they [clients with dementia] are like and you'll get used to it in the end, you're not doing anything wrong as a carer…’ but yeah sometimes it can feel quite personal and you just have to think it's not, they're not aiming it at you specifically, it's just the way they are. (S04, 4 years' experience)
…a lady, very aggressive, I was changing her, helping her change. She was absolutely fine and then one second later she got very angry and then went, went to hit me. Erm, she didn't actually hit me, she just got really angry, so I just stepped back, let her calm down, left the room for a second and then tried again … because I was on my own I was … worried. (S14, 9 years' experience)
The level of aggression that participants encountered defined how and whether they were able to cope with it. Verbal aggression was generally tolerated and often mitigated by the homecare worker devising strategies to calm the client down and/or to remove themselves temporally from the situation:
I think nine times out of ten they don't mean it. It's just with their brain and stuff like that, they don't, nine times out of ten, they don't understand what they've done because I've [left the room] then gone back and gone ‘have you calmed down now?’ ‘Yeah, nothing wrong with me’. (S09, 3 years' experience)
Distancing themselves from the risk situation was the most common method used to mitigate risk and this was often used in conjunction with other strategies, such as changing the tone of their voice or distracting the client. They also took steps to protect themselves by ensuring they had the means to call for help if needed:
You're completely on your own so you have obviously got to make sure that he is not going to lash out because he's in a bad mood. Obviously, we need to make sure we've got a phone near us if we need assistance. (S03, 19 years' experience)
The likelihood that a client could become physically or sexually aggressive was also accepted as commonplace. Participants described being on the alert for the potential for this to happen. Their awareness of the potential danger and the likelihood of it occurring was often based on participants' prior experience of client behaviours. Prior experience provided them with the knowledge of the best way to avoid any threats posed to them by their client:
Always occupy the hands and always be careful with the feet because you never know – the foot goes out, out and erm you got a gentleman who actually can be very, well it's called sexual abuse, but they don't know what they are doing. You try to wash them, and they try and put a hand in between your legs … hands is another thing with the males. Avoiding it and coping with it. (S06, 9 years' experience)
Aggressive behaviour was not usually deemed serious enough to require outside assistance providing that it did not place the homecare worker in a position where they were likely to become overwhelmed by the situation:
…just discourage them of the behaviour, especially the sexual one, unless they are really forceful and that needs to be done something through the Social Services management, double assistance. When they are strong it's always recommended double assistance but a verbal one [verbal aggression only], well it's … just nothing … Just gets over the top of your head and carry on! (S05, 1 year of experience)
However, when the level of aggressive behaviour began to pose a substantial risk of harm to the homecare worker or where the risks were unpredictable and the outcome uncertain, the homecare worker and/or agency would act to remove the client from their care:
He was a gentleman with poor mobility, he couldn't walk without our assistance. The kitchen was a sort of long sausage. He was sitting right by the back door and I was doing him, I think a cup of tea and I was talking to him and I just noticed, split second, his facial expression changed, and he jumped out of the chair. He grabbed me by my throat, pulled me down to the cooker, luckily, I hadn't cooked anything. I managed to push him away, but I pushed him away on a chair and he was sitting backwards to the kitchen door so I could not physically get out. He grabbed me again. I pushed him again and I think it was a split second, I put a foot on a chair jumped over the chair. And I stand in the hallway because I was calling my boss and he actually got out of the chair, walked, grabbed me by my wrist, I had bruises on my wrists as well, threw me out and chucked the care plan at me and locked all the doors. They immediately sent another carer. (S06, 9 years' experience)
Overall, participants presented a picture of being at risk of aggressive behaviour and needing to calculate the probability of harm to themselves. A certain level of risk associated with aggression was tolerated or accepted because it was considered part of the client's condition and something that clients did unwittingly. In response, they used their care experiences to develop their own preventative strategies in order to mitigate the danger associated with the aggressive behaviour. The preventative strategies were informed by their prior experience of their client's behaviour, their own level of tolerance of the risk and their perceived ability to control the situation. However, where the aggressive behaviour had the potential to result in visible or serious harm to homecare workers their tolerance of the risk was reduced. At this point the homecare worker or agency would act to eliminate risk and were more likely to withdraw care.
Risks to clients – the client's home and behaviours as sources of risk
Participants described a range of dispositional and contextual factors that heightened their client's risk of experiencing harm in or around their homes. These included risks ranging from falls, skin breakdowns or missed medications to setting their kitchen on fire or getting lost as a result of walking away from their homes. Clients' homes were described as locations of risk that stemmed from the client's behaviours, with the potential for everyday activities to turn into dangerous situations:
He smoked quite a lot, this gentleman, I mean 40–60 fags [cigarettes] a day. And we didn't deprive him, we gave him cigarettes while we were there so we could see what he was doing … and he'd got up and wandered into his bedroom … I don't know what he'd gone into the bedroom for, but I just literally walked into the bedroom door just as he was opening the wardrobe door to throw his cigarette in … if I hadn't of been there? … you don't know what could have happened. So, we took the cigarettes away and he only had them when we were sat there with him in the same room. (S17, 2 years' experience)
Limiting when the client could smoke his cigarettes to when the homecare worker could sit with him provided a means by which risk could be mitigated rather than removed altogether, thereby providing a solution for both the client and the homecare worker. Awareness of the client's normal smoking patterns enabled the homecare worker to use the information to make decisions on how to deal with or control the risks associated with the dangers of smoking. However, when the client began to exhibit unusual behaviour that was not consistent with his normal smoking routine and which had the potential to put the client's life or home at risk, the homecare worker was forced to re-assess the situation and instigate surveillance measures in order to ensure that the risk mitigation strategies succeeded.
However, where a client's behaviour put their property or life at risk, participants framed the situation as high risk and therefore not necessarily amenable to mitigation. From the perspectives of the homecare workers and the care agencies, elimination of the risk in the form of a cancellation of the care package was most likely to be selected as the method to control the situation. For example, participants described situations where clients had put themselves in danger by accidently causing a fire in their home:
I walked into a lady and her kitchen was on fire. She'd put her bowl with a tea towel on the hob and turned it on by accident. We had to have the fire brigade. You know, I even, I had to say to her ‘come on, we've got to get out’. (S07, 43 years' experience)
We had a couple of incidents with him where he'd like leave the cooker on with the frying pan with oil and stuff, leave the doors wide open. He'd walk over to the shops … and he'd go to the shop and just get lost, and the neighbour will have to bring him back home. I used to worry about it all the time and that's why in the end, we had to be like, he needs extra care, we can't look after him anymore because of how much he puts himself at risk. (S15, 6 years' experience)
Whilst participants may have been aware that there was a potential risk of fire in the client's home, the timing and outcome were not necessarily predictable. Therefore, in the context of an emergency, the participants reported needing to assess the risk quickly and respond instinctively in order to remove the client and themselves from the danger.
Participants also reported needing to be aware of the potential risks to their clients if they went outside their home unsupervised. Preventing harm to the client in this situation represented a balancing act for homecare workers – they needed to weigh up the risks associated with locking people in their homes compared with the risks they may encounter outside their homes. Whilst locking clients in their homes eliminated the risks associated with going outside, this strategy was not necessarily seen as entirely safe:
I think the worst one is obviously knowing that we're not allowed to lock that door. But knowing that it's the wandering, that does scare me really, that one does … and then if you do lock them lock them up and then there's a fire! It's a catch 22. If you don't lock them, they're then over the heath walking the dog and stuff. (S03, 19 years' experience)
Participants described experiencing emotional stress when considering the potential consequences of both options as a control measure. Their tolerability of the risk was put to the test. Where a client's condition or their surroundings were considered to present definitive dangers, it was more likely that the homecare workers and/or agency would consider that the situation was more than they could handle and efforts to eliminate the risks would be taken:
So yeah, she's, she the lady who is quite independent … we have to lock her in because she quite often, I think a while ago liked to go out and it's not safe, it's not safe, erm if she is unsteady or she won't know where she is going or even weather dependent and if we turn up and she is not there! … I suppose you are confining them to their home, and they can't go outside. (S05, 1 year of experience)
Participants dealt with a wide range of risks to their clients and felt able to take action that would keep their clients safe. Based on their experiences of looking after clients with dementia, they had developed strategies to manage a range of situations within the home. These included using technologies of control including locking clients in, switching cookers off at the socket and using safety rails on clients' beds. Most control and removal measures were aimed at reducing the chance of the client engaging in harmful behaviour, having an accident or preventing the carer becoming injured.
However, where participants were suddenly faced with potentially life threatening, serious problems and the outcome was highly uncertain their tolerance of risk diminished further, and they sought a change of care arrangements to reduce negative outcomes.
In attempting to manage risk and dangers within their clients' homes, homecare workers were placed in a similar position to that previously found with social workers in this setting (Linzer, Reference Linzer2002), having to balance incompatible values, sometimes overriding their clients' wishes, reducing their freedoms or taking their rights away in order to protect their clients or themselves. This in turn had the potential to affect the right of the client to maintain autonomy and to place the homecare worker in a position where their actions might result in different types of harm to their client. Since no risk management strategy can ever completely control uncertainty or danger, homecare workers have to continually work and make decisions within a grey ethical zone. Therefore, there is an inherent ambiguity within their role.
System risks – homecare workers' status within the health and social care system
Participants described a range of system-related factors that they felt had the potential to affect the quality of care that they were able to offer their clients. Firstly, they acknowledged that their level of training was, at times, insufficient to provide safe care and that they may be putting their clients at risk:
It was the first month of my work. I hardly had any adequate training whatsoever. I was doing a sit for a gentleman who had Alzheimer's and he was a gentleman with very poor mobility, he couldn't walk without our assistance. (S06, 9 years' experience)
So, I have only been in there a couple of times … but when I first went in, I didn't know she had dementia, so it was kind of a bit of a shock. (S12, 4 years' experience)
Secondly, participants suggested that despite their concerns about limited training, the level of decision making they were expected to engage in represented a significant responsibility – on a par with that undertaken by health and social care professionals such as doctors and nurses – but for which they were not necessarily equipped or supervised:
For what the carers do, have to do as well, erm I do think that they're not, they're not looked upon as a nurse, a doctor but they do make decisions, but they make decisions, not medical decisions but they make decisions that could potentially hurt somebody erm and I don't think unless you've actually done it yourself, I don't think everybody realises what they have to do. And you're always making decisions when you go in and you know. Do I need a doctor? (S03, 19 years' experience)
Thirdly, those participants with several years' caring experience identified a number of challenges they faced resulting from constraints within the wider health-care system. In their attempts to reduce the risks posed by their limited training and knowledge, participants described trying to contact health and social service authorities to support them to provide the best care for their clients but with limited success. Some participants suggested that the support they could draw on was adversely affected by a lack of integration between different health and social care sectors. This was perceived to jeopardise the wellbeing of their clients:
You can't ring them anymore you have to go through a direct hub … so you speak to a call handler and they take the information, and they say that somebody will call you back and rarely do they. We do have a generic email which is the same hub, which you can email but you rarely get a response quickly. (S02, 8 years' experience)
Other participants suggested that political and financial constraints in the health and social care system resulted in homecare workers being seen as an extra pair of hands and having to manage the gap in services:
Her surgery, they're not very forthcoming. I don't think they understand dementia at all. And so, they said, ‘Can you bring her down? [to the surgery] Well not really because she's got dementia … So, the relative had to explain everything and eventually the doctor agreed with the carer's assessment. (S07, 43 years' experience)
But sometimes it does feel, and especially Social Service, sometimes they'll say, ‘Well the carers can do that’. But we have so much to do. (S02, 8 years' experience)
With limited access to other health and social care professionals, participants felt that their clients could be endangered when they were expected to take on these additional activities without appropriate training and which were beyond their capabilities. Here the squeezed health-care system, which caused homecare workers' difficulties accessing professional medical or nursing support, itself created and sustained risks, increasing the potential for risks in homecare practices.
Perceived control and impact of risks
Based on homecare workers' perceptions of being able to control risks or not, we utilised their perception of risks and risk mitigation strategies in order to categorise our data into three risk levels: low, medium and high. Low-risk situations were amenable to control by strategies individual homecare workers used in the moment, medium-risk situations were amenable to management where the wider homecare team was involved and high-risk situations were perceived as not amenable to management within the clients' homes in the long term.
Overall, the findings suggested that homecare workers' perceptions of the dangers they or their clients faced could be categorised as low, medium or high risk, which in turn influenced their perception of their ability to control and manage the situation. Table 1 provides an overview of the relationship between perceived risk levels, perceptions of their ability to control the situations and the impact on care provided to the client. As the level of perceived risk increased, the level of control that homecare workers felt they had over the situation reduced. Concurrently, the higher the level of risk, the greater the impact on the client, often resulting in loss of autonomy such as being supervised while smoking, restricted in their movements or ultimately losing their chosen care.
Perceived control and impacts of risks
Discussion
This article aimed to examine homecare workers' experiences of providing care for clients with dementia who are living in their own homes. The analysis presented is a novel examination of homecare workers' experiences of tolerating and mitigating risks in caring for clients with dementia. Three interrelated aspects of risk were found to influence decision making, action and the subsequent impact on the client: the level of the risk, homecare workers' perceived ability to control the risk and their tolerability of risk.
High-level risks included situations where the client and/or homecare worker were placed in potentially life-threatening circumstances such as a house being on fire or uncontrollable physical violence. In these circumstances, homecare workers had little control over the risk situation, their tolerability level was very low and they were unable to balance the clients' rights to positive risk taking with the risk being faced. The implications of this for the clients' rights to care may be severely restricted.
Medium-level risks included wandering, falls, locking clients in their homes, and dealing with the wider health and social care system. The homecare workers' tolerability of medium-level risks resulted in the instigation of strategies or techniques of control to protect the client. This in turn reduced the types of positive risk-taking activities in which the clients could engage. The impact of this risk mitigation approach on the client could be a reduction in autonomy through instigation of regulated activity. Controlling perceived physical risks was prioritised over potential risks to psychological wellbeing through loss of autonomy (Clarke and Mantle, Reference Clarke and Mantle2016).
Low-level risks included such things as verbal or mild physical aggression which were tolerated by the homecare worker. Mitigating strategies that were used included avoidance and displacement activities which had become routinised.
The literature on risk presents a continuum of understandings of risk in long-term conditions. This ranges from preventing harm to positive risk taking for improved wellbeing (Clarke et al., Reference Clarke, Gibb, Keady, Luce, Wilkinson, Williams and Cook2009). Risk taking can be used to improve an individual's quality of life by enabling them to maintain control or autonomy, however, it also has the potential to threaten their safety (Clarke, Reference Clarke2009; Zinn, Reference Zinn2019). There has been an ongoing policy drive to ensure that people with dementia have the same rights as everyone else in society – that is to have a say in the way in which they live their lives (Department of Health, 2015; Cahill, Reference Cahill2018). It is recognised, however, that giving people with dementia choice or control over their lives may well incur an element of risk (Morgan and Williamson, Reference Morgan and Williamson2014).
Enabling people with dementia to maximise the quality of their life involves balancing risks with any potential harm associated with positive risk taking (Manthorpe and Moriarty, Reference Manthorpe and Moriarty2010). Risk enablement involves supporting people living with dementia to take risks by creating plans to minimise or manage potential negative outcomes. To achieve this, health professionals would be expected to engage in risk appraisal, risk identification and risk estimation in order to judge the acceptability and/or tolerability of a risk. Acceptable risks would be expected to incur minimal negative outcomes and would not normally require a risk assessment or mitigation strategies (Boulder et al., Reference Boulder, Slavin and Lofsledt2007; Renn, Reference Renn2010); whilst risks that are deemed tolerable would be ones that are considered acceptable (Lupton, Reference Lupton2013) and worthwhile for the benefits they provide for the individual once the potential for harm has been minimised. Risk enablement provides a tailored approach to risk and allows for the fact that dementia affects people in different ways.
Although homecare workers often fulfil a role similar to that of health-care practitioners, their level of training would not necessarily be expected to equip them with the knowledge and skills to develop evidence-based risk enablement strategies. Data from the study reported here provide insights into the factors underpinning homecare workers' risk assessment and management decisions. Care agency-employed homecare workers follow agency policies and procedures, using client care plans to guide the way they care for their clients. Such care plans can represent and perpetuate a shared disciplinary perception of what is deemed dangerous or risky (Douglas and Wildavsky, Reference Douglas and Wildavsky1983). The findings of this study suggest that homecare workers also drew on their own perceptions and tolerability of risk, shaped by experiential learning, interactions with colleagues and clients (Lupton, Reference Lupton2013), and their tacit experience and knowledge of their clients to assess and mitigate or manage risks posed to their clients or themselves (Zinn, Reference Zinn2016).
In England, the need for social care support is rising, yet this is coupled with tighter criteria for client eligibility and over 100,000 unfilled staff vacancies in the sector (Bottery and Ward, Reference Bottery and Ward2021). Lack of skilled workers could be due to low pay and high staff turnover (Bottery and Ward, Reference Bottery and Ward2021), as well as limited access to training (Polacsek et al., Reference Polacsek, Goh, Malta, Hallam, Gahan, Cooper, Low, Livingston, Panayiotou, Loi, Omori, Savvas, Batchelor, Ames, Doyle, Scherer and Dow2020). These stress factors on the industry are key background factors surrounding homecare practices. Additionally, in terms of regulations, the Health and Safety at Work Act (1974) reflects a grey area in which it only applies to certain types of domiciliary work in private homes (Health and Social Care Services Unit, 2011). Ascertaining whether there has been a failure of regulation related to the homes of homecare clients which are workplaces for homecare workers, or a failure to apply regulations to the risks faced by homecare workers, was beyond the scope of this study and need further specific research.
The findings of this study provide important information for policy makers and homecare agencies in their efforts to provide client-centred dementia care. Firstly, the insights provided into how homecare workers identify, assess and mitigate risks suggest that whilst homecare workers tolerated a relatively high degree of risk in their role, the thresholds of risk at which they felt they needed to either instigate control measures or remove the client from care are potentially incompatible with the risk enablement agenda. Future policy on risk management or enablement in homecare should acknowledge and take account of the expertise, experiences and shared values of homecare workers to ensure that enablement strategies can be supported by homecare workers.
Secondly, homecare workers' use of tacit or experiential knowledge suggests that those charged with providing training for homecare workers should focus on experiential learning rather than didactic approaches detached from the care setting. Providing shadowing, mentoring on the job, including experienced homecare workers in training scenarios/videos to familiarise homecare workers with the types of risk situations they may encounter and strategies for mitigating them are likely to be most effective for homecare workers. Risk management should consider the local context of each client (Bailey et al., Reference Bailey, Clarke, Gibb, Haining, Wilkinson and Tiplady2013), their needs, abilities, wishes and preferences (Dickins et al., Reference Dickins, Goeman, O'Keefe, Iliffe and Pond2018). Involving family members and shared decision making should be key (Stevenson and Taylor, Reference Stevenson and Taylor2016). Training modules should be developed in collaboration with experienced homecare workers to think through how to achieve optimal care and how to create policies around safety, security and wellbeing for clients and homecare workers. Training programmes should support workers to balance the tensions between risk management strategies and the ethical pressures created by implementing them.
Thirdly, professionals within the wider health and social care field need to better understand the potential value and skills of the homecare workforce, and how this workforce could be utilised more effectively to improve dementia care with their support (Manthorpe et al., Reference Manthorpe, Vandrevala, Abrams and Samsi2019). Valuing and supporting this workforce are key if they are to better balance risk management with client autonomy, provide optimal support to people with dementia and safeguard themselves.
Limitations
The main limitation of this research is that it is an exploratory study located in one geographical area. However, participants were recruited from seven different care agencies, providing variation in the sample.
Conclusions
Although, dementia homecare workers are often poorly trained and lowly paid, they are expected to identify, tolerate and mitigate risks daily. Where risks were high and homecare workers' control low, the impact on the client could be significant, this limited clients' agency in determining their own care and/or any positive risk taking. There is a need to devise training that incorporates experiential learning and the use of tacit knowledge, and for future policies on risk management and enablement in homecare to acknowledge and draw on the expertise, experiences and values of homecare workers.
Acknowledgments
We would like to thank the homecare worker participants for taking part and the services they work in for facilitating their involvement. We would also like to thank our patient and public involvement advisory group for their insights when discussing the findings of the research.
Author contributions
TB devised the study. AR undertook the research interviews. TB and AR carried out primary analysis of the data and interpreted the data. AR drafted the manuscript. TB and AR reviewed and edited the text, and approved the final manuscript.
Financial support
This is a summary of research funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme (CB8 2019/20). The research was conducted at the University of East Anglia. TB was supported by a fellowship from the Alzheimer's Society, UK, 372 (AS-JF-17-002). The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR, the Department of Health and Social Care, the Alzheimer's Society or the University of East Anglia.
Conflict of interest
The authors declare no conflicts of interest.
Ethical standards
The research received approval from the UK Queen's Square Research Ethics Committee (18/LO/1677, IRAS Project ID: 251339). Participants received information prior to agreeing to take part in the study and provided written consent to interviews.
