3.2. Support Needs of Working Caregivers
Working caregivers expressed several needs for which they could use support or where support could be improved. Six themes, covering the caregivers’ support needs, were identified from the data: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers’ health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. An overview of themes mentioned by the participants is presented in Figure 1
. To address their needs, caregivers suggested several support options in different settings (i.e., home and social environment, care and support environment, work environment and societal/policy environment; Table 3
Theme 1: Recognition of Caregivers, including the Challenges They Face
The caregivers in this study advocated for more awareness and recognition of caregivers in society. They felt that people could be better informed on matters such as when one can be considered a caregiver, what it means to be a caregiver and the daily challenges they face, including difficulties in combining work and care. This would be helpful to them in two ways. Firstly, they believed it could help caregivers to better recognize themselves as a caregiver, as several participants mentioned that they just enrolled in their caregiving roles without being conscious of it and the consequences.
“Again, it’s about everyone being familiar with it. You know, it starts with awareness. If you don’t actually realize that you are a caregiver and whatever that entails, you know, you just do it, you take care of your loved ones anyway. And the situation presents itself and before you know it you are in the middle of it and you are so caught up in it, that you get sucked into that flow and only later on you find out, wow, that flow is fierce; what am I doing?” .
(Part. 2 FGD 4, female)
Several caregivers mentioned being unaware of the possibilities to receive support and discussed how not considering yourself a caregiver could hinder the use of support services available for caregivers.
“It was my son who said: ‘Now you have to slam on the brakes, because of course, Mom needs that care, but you don’t have to do it alone. You can get support for that.’ And it’s not like I was afraid to ask for help there, but it had never occurred to me. Never.”.
(Part. 2 FGD 5, male)
Secondly, more recognition of caregiving and its challenges would help caregivers feel more visible and appreciated in their role. Some caregivers would like to be more acknowledged by health and social care providers, while others mentioned supervisors at work and colleagues, or the older care recipient themselves. They suggested that societal recognition could be spread through informational campaigns (e.g., posters, flyers and commercials) by the government or by employers.
“But you know, I never get any recognition. It’s all taken for granted. So if there is just a lot more attention for this from society, then I also think it is something that… In the end I think that every person wants to be recognized in that way too, and that you will be able to carry on longer in that case.”.
(Part. 2 FGD 4, female)
Although caregivers saw more awareness for caregivers as a good general improvement, they emphasized that better societal recognition should also entail improving actual support structures and caregiver rights in society. They noted that, although there is much societal demand for informal care, they did not always feel sufficiently supported in their roles.
“We have a societal issue here in the sense that we think that informal care is very important. So then it should be organized, right? Don’t go around saying, “Just be a caregiver, and how? Just go and figure it out for yourselves.” These people all have to reinvent the wheel, so why not make it a law, do something with it in the collective labor agreements so that it is protected, that you have rights as an informal caregiver. That it is a right, not only a duty and something you want, but also a right that you can and are allowed to do.”.
(Part. 2, FGD 5, male)
Theme 2: Attention for Caregivers’ Health, Wellbeing and Ability to Cope
Some caregivers found it difficult to balance work and care with their personal lives. They seemed to prioritize their work, family and caregiving tasks above their own wellbeing: “Keeping all balls in the air all the time… Whatever happens to be the greatest need at the moment, that’s what will take up most of your time. That’s how it came across to me. And you don’t spend the time on yourself, in any case.” (Part. 3, FGD 6, female). Caregivers mentioned several personal adverse effects of having to juggle care and work demands, such as health problems, fatigue and limited room for relaxation and exercise. They indicated to sometimes experience feelings of anxiety and guilt if they were not around to give care, and were then unable to enjoy their idle time. Moreover, some caregivers experienced negative spillover effects into their family lives, reporting marital problems, neglecting household chores and being unable to spend enough time with one’s children or partner. Although they emphasized that they saw caregiving as a labor of love from which they often derived fulfillment, it was sometimes hard to truly disconnect and recuperate from their caregiving responsibilities.
“Well, you call twice a day, right? And during our holiday, we went to my mother-in-law, and I went to see my mother. And it just keeps you busy. You’re never completely away from it all.”.
(Part. 3, FGD 5, female)
Caregivers expressed several needs, centered around helping them to take better care of their own mental health and wellbeing. An often-mentioned need was having a ‘sympathetic ear’ to share their situations, questions and concerns. This could for example be someone in the caregiver’s family or social network, other caregivers or a buddy at work. Talking to other caregivers could be mutually beneficial as they could exchange advice and tips based on shared experiences. Others preferred support from a professional who is at a distance from the caregiving situation, such as a psychologist or coach. Such professionals could help caregivers to deal with different challenges, such as setting boundaries in their role as a caregiver and delegating tasks. Caregivers described caregiving as a ‘sliding scale’ in which they take on more and more tasks without realizing. This implies a risk of being overburdened when they recognized too late that they needed support.
“Yes, [what I need] is only one thing and that is a sympathetic ear, someone who wants to listen to my side of the story only. It could be on the phone, or in a live chat. I wouldn’t mind if that’s planned, if I say, ‘I just need a little chat now,’ that we schedule that. I’m thinking of a coach or something along those lines, who is good at asking questions, is able to confront and also helps to maybe think about possible solutions [...] Someone who really notices: now you are of no use to anyone, now you have to take a break.”.
(Part. 5, FGD 2, female)
“[I would like to] learn how to take good care of myself. Making sure that you don’t get completely exhausted. It would be good if this comes into the picture not just when you get stuck or are in danger of complete exhaustion or are getting close to a burnout, but much earlier. […] So that is also something that can be discussed when it comes to supporting the caregiver.”.
(Part. 4, FGD 6, female)
Theme 3: Opportunities to Share Care Responsibilities
To alleviate care burden and prevent overload, caregivers also mentioned having a need for more opportunities to share and delegate their care responsibilities. They expressed a need for both incidental support (e.g., for a vacation or a day off, to take over some social visits or to go with the care recipient to doctors’ appointments) and structural support (e.g., respite care, ongoing home care or adult day services). Some caregivers preferred more assistance with (medical) care tasks, while others were in need of more support with day-to-day tasks, such as keeping the older adult company and helping them live comfortably at home. To be able to recharge, the participating caregivers preferred sharing the care with someone that they themselves and the care recipient are familiar with and trust: “That you just know: there is a trusted person who will now take over from me and I can let things go for a bit and, because of that, pick things up again with good energy, as it were.” (Part. 3, FGD 1, female). Caregivers, therefore, stressed the importance of supporting caregivers early on in helping them build a preventive network to fall back on and share caregiving tasks.
“Networking before informal care is needed; a social basis is important. There is not enough attention being paid to that at the moment. Everything is focused on care and not on knowing each other, and sharing things with each other and staying out of care. [That’s why we need to] build a preventive network so that if something happens, then you have a network that is a logical interlocutor and considers it normal to offer support for a while.”.
(Advisory board member, female)
Caregivers mentioned several barriers that prevented them from making use of support in sharing care, such as having a small personal network to rely on or the older adult’s refusal of (extra) care from strangers. They also experienced financial barriers to make use of private care initiatives that provide care and company at home. Lastly, caregivers mentioned knowledge barriers, such as a lack of awareness of private and municipal support services to share care.
Theme 4: Help with Finding and Arranging Care and Support
Caregivers felt a strong responsibility for their loved one’s health and wellbeing. Apart from their personal caregiving tasks, they often dealt with practical struggles and regulatory matters while arranging the older adult’s care and support. These coordinating matters were often experienced as time consuming and seriously burdensome: “The maze of everything you have to figure out for yourself drives me completely nuts. […] I am already in a situation where I can no longer even think clearly and logically.” (Part. 6, FGD 3, female). According to the caregivers, a major problem was posed by the ‘jungle’ of health and social care services and providers which they had to navigate, each with their own rules and regulations. They found it important that the accessibility of the care system improved for both caregivers and the older care recipients, in particular for those who were new to the system or experienced language barriers, for example due to a migration background.
“As an informal caregiver, you’re supposed to do that [arranging care] yourself, but you can’t. Certainly not if you don’t speak the language and certainly not if you’re new to it and don’t even know where to start. So then it really depends very much on: are you lucky enough to meet the right people who will take you by the hand and guide you and help you on your way? And if not, it is a real struggle to organize the right care and support at all before you get to… look after yourself as a caregiver. […] And the moment the care institutions are more prepared for that group of older migrants, this can ease the burden on caregivers more quickly.”.
(Part. 4, FGD 6, female)
“You don’t know where to start, you want to help, but there are a hundred thousand regulations, a hundred thousand service counters, and how does it all work?”.
(Part. 3, FGD 6, female)
Other recurring issues mentioned by the caregivers were communication problems with and between different health and social care providers, it only being possible to reach care providers and plan appointments during working hours and privacy regulations that hampered the arrangement of care in the name of the older adult. Caregivers, therefore, voiced a strong need for assistance with the managerial challenges related to these processes and procedures. Likewise, caregivers also experienced difficulties with finding and arranging support for themselves.
To better help caregivers in the processes of finding and arranging care and support —both for themselves and the older care recipient—participants needed a clear and easy to find overview of all available support services. Such an overview should include where and how to apply for the support, such as an (independent) platform, a website, a toolkit, a step-by-step plan, a central telephone number or an information desk at the municipality. “Finding information in an accessible way […]. I find it very difficult to find decent information and how it all works and what you have to do and what you have to consider.” (Part. 3, FGD 5, female). In addition, the caregivers expressed the need for a central point of contact, such as a case manager or municipality employee, who can offer practical advice on the appropriate support for one’s situation and proactively assist in the arrangement of care.
“I just wish there was a central point, where someone is assigned to you. Someone who actually helps you to sort out how you can best get things organized. And who maybe also takes some steps in that sense. Because I think now it’s really… it’s enough to make you weep.”.
(Part. 6, FGD 3, female)
“It would be so good if you had one service counter at the beginning, at the starting point. Or one person with whom you can get things started and who puts you on the right track, what the options are. So the starting point should be clearer and easier to find.”.
(Part. 3, FGD 6, female)
A particular concern of caregivers regarding the organization of care was not being sufficiently prepared to deal with potential future changes in the health and care of their loved one. For example, they worried about how their loved one could continue to live comfortably and independently at home, or how to best arrange the transition to a care home. They, therefore, preferred that a contact person would also help them anticipate these future challenges so that they can act and prepare in a timely manner:
“What I can expect and whether they think that my mother can continue to live independently. And if not, should I be taking steps now, should I go and start inquiries at the nursing home… Yes, all these things actually. What I should be considering and what I can work towards, as it were.”.
(Part. 3, FGD 4, female)
Theme 5: Understanding and Support from the Work Environment
According to the caregivers, having to combine paid work and care should be seen as a shared issue between employer and employee, and not just as a personal problem. Caregivers, therefore, found that employers should offer support to their staff who deal with caregiving tasks. Needs that should be addressed by the workplace/employer were: (1) more social support from employers, supervisors and colleagues, (2) expanded and tailored solutions to help caregivers combine paid work and care and (3) increased knowledge of the rights and support options for caregivers among both employers and employees.
Social support at work in terms of understanding of the employer, supervisor and colleagues was considered important. The caregivers indicated that employer understanding would make them feel supported and less guilty about their possible suboptimal work performance. This was supposed to imply an open and safe culture in the workplace where such issues can be openly discussed. However, several caregivers actually found it difficult to discuss their situation and truly convey what kinds of challenges they encounter as a working caregiver.
“And I myself was thinking more about, well, understanding from your employer and your colleagues. You can try to explain… It’s sometimes very difficult to explain what’s happening to you, so that they can also better understand that some days you can do less—less of your work. That you’re there, but you’re not actually there.”.
(Part. 4, FGD 2, female)
“Well, my most important need is really understanding. You know, understanding from your employer. When you are really busy with care, no matter for whom, that there is understanding and openness and ... safety, especially the safety of being able to share and talk about it. That sharing is encouraged, that you can also communicate and name it.”.
(Part. 2, FGD 6, female)
While some caregivers reported positive experiences with the understanding they received from their employer (“And when something happens unexpectedly—they never mind that, when I tell them, they always say: ‘That’s a priority.’” (Part. 3, FGD 4, female)), others encountered a less empathetic attitude: “And I always indicate this [the care tasks] at the start of work, also to my employer. And I’ve just noticed that there is very little room for that, very little understanding. You know if you are an engine driver, then you have to work. [...] And I actually experienced that my care tasks at home were perceived as very difficult [by my employer].” (Part. 2, FGD 5, male).
Apart from social support from their employer, caregivers needed tailored solutions to be offered to combine paid work and care. For instance, some preferred more flexible and continuous opportunities to take care leave—preferably without a loss of income. Long-term caregivers, in particular, found current care leave options not always suitable for their situation, which meant that they did not use them or used vacation days instead. Furthermore, caregivers required flexible working hours and possibilities to work outside of the office—which had become easier in some cases during the COVID-19 pandemic—but also mentioned that they used this flexibility to catch up on work during evening/night hours, which left little time for themselves or their families. It was, therefore, also considered important that employers support them by (temporarily) diminishing their task load or reassigning duties to someone else.
Likewise, some of the self-employed caregivers emphasized that they also had a need for financial support structures and care leave: “There is nothing to fall back on, to support you at that time, to make things a bit easier. And that was pretty scary, that I thought: I can’t afford a burnout. There is no sickness benefit if that happens, there is just nothing I can turn to.” (Part. 3, FGD 6, female).
Finally, some caregivers mentioned that they were unaware of their rights and the existing organizational policies for caregivers, and would like to be better informed about their options. “To be honest, as a caregiver, I don’t even know what kind of laws about that there are. You know, your employer’s regulations and laws. I don’t know them. It would be great if something could be done about that too.” (Part. 2, FGD 6, female). Others also indicated employers themselves were ill-informed about available workplace support: “The employer should also make a plan for informal caregivers. It’s not as if you are the first to ask the question: I need care leave. They still had to think about it.” (Part. 2, FGD 3, female).
To address all these needs, caregivers stressed the crucial role of (direct) supervisors. The participants who were satisfied with their options from the employer to combine work and care often mentioned that support, in the form of feeling heard and understood by their supervisor, played a role in their positive experience. Conversely, negative experiences with supervisors could contribute to feelings of burden and dissatisfaction in being able to combine paid work and care.
“Over the years, I have experienced different reorganizations and had different managers. And usually I could count on the understanding and cooperation and flexibility of the manager. But I have also had a manager who had no sympathy at all. Who thought that those kinds of privileges should be stopped.”.
(Part. 4, FGD 6, female)
Theme 6: Technological Support Tailored to the Needs and Capacities of Caregivers and Older Adults
The majority of the caregivers mentioned that they or the older adult they were taking care of (had) used some form of technological support, such as technology to stay in touch with the older adult (e.g., video calling), to ensure the older adult’s safety (e.g., hip airbag, portable alarm button, GPS tracker) or to communicate with other caregivers or care professionals. However, experiences with technology were mixed.
“Yes, we had one of those sensors, like a chain, you know, that my mother could press if something happened in the house. It was linked to our phone numbers, but she just didn’t want that. She kept throwing it out and it was a waste of money, because you had to pay for it every month, for the switchboard. But for her, it had no added value.”
(Part. 4, FGD 4, male)
In general, caregivers were positive about the use of technology in caregiving when it added value for both the caregiver and older adult. According to caregivers, technology could be beneficial when it relieves them from worrying about the older adult’s safety, for example through the use of alarm buttons or updates about the older adult’s day in an online ‘family environment.’ To facilitate the use of technology by the older adult, some prerequisites were mentioned, including an open, positive attitude towards the use of technology and technology that was user-friendly and tailored to their cognitive and physical capabilities.
“He just has those fingers with rheumatism, so it’s not always that easy. So if he has to do something on his tablet, it often goes like, you have to enter a code and then three of the four numbers are entered, but not the fourth and then it goes wrong again. And that can be a problem for him. So the tools are often not really geared to being used by the elderly.”.
(Part. 2, FGD 2, female)
Still, the caregivers mentioned that it takes time and effort to become familiar with the use of technology and its benefits: “Of course, we think very quickly and very easily, but that is not the case in their lives, so it takes a lot of patience and time and explanation from the caregiver, to get things done. And once it’s there, then after a day he says, ‘Oh, I wish I had done it much earlier.’” (Part. 3, FGD 2, female). They, therefore, recommended that caregivers should start the introduction of technology as soon as possible, so that the older adult can get familiar with it and experience less barriers in its use. To help in the actual application of technology, assistance or teaching through digital coaches or through technology workshops were suggested.
Finally, caregivers also expressed a need for more knowledge on what kind of technology is available to help older adults to live longer at home: “We talked earlier about looking ahead and future scenarios. And we happened to come up with this idea [of a stair lift], but I’m also sure there are all kinds of things I never thought of that I’m going to come up against later on. And, yeah, it would be nice to just have a better idea of that.” (Part. 2, FGD 2, female).