Abstract
Older care recipients living at home increasingly rely on support from informal caregivers. As informal caregivers often combine these caregiving tasks with other tasks, such as paid work, they are at risk of becoming overloaded. To decrease informal caregiver burden, different forms of support are available that also affect older care recipients’ lives, such as respite care, technology, or home care. The aim of this qualitative study was to obtain more insight into the perceptions, potential concerns and preferences of older informal care recipients about the use of support to relieve informal caregivers. We performed a story completion writing task among 23 informal care recipients aged 65 years or older, using hypothetical situations to let them reflect on different caregiver relief support options. The task was followed-up by a story-mediated interview. We used thematic analysis to inductively analyze story completions and interviews. We found that older informal care recipients were often willing to use support to relieve their caregivers, to ensure their wellbeing. However, they were also concerned about how the use of such support may conflict with their interests, preferences and values (e.g. respect for their autonomy, privacy, having a trusting relationship with a caretaker, paying attention to human aspects in care). Older adults were most hesitant to use adult day care facilities and technological support options. While these areas of tensions cannot always be completely resolved, it is important to jointly identify and discuss these, and work towards solutions to balance the respective interests, values and needs of older adults and caregivers. Health and social care professionals and older adults’ personal networks may help in overcoming hesitation to use support.
1. Introduction
Due to ageing societies and reform of long-term care policies, in many European countries, growing numbers of older adults with health and social care needs live at home. They often rely on informal care from family, friends or neighbors [1, 2]. While often intrinsically fulfilling, providing informal care combined with other daily life activities, such as a paid job, can be burdening for caregivers’ (mental) health and wellbeing [3, 4]. Adequate support for informal caregivers (henceforth: caregivers) can decrease these detrimental effects, and simultaneously optimize care for the older adults they take care of. In the long run, such support may even help older adults live longer in a home-based setting [5].
Several support forms to incidentally or structurally relieve caregivers exist. Some services target caregivers themselves (e.g. support groups or workplace support), and interfere little with older adults’ lives. Other forms, however, directly target the older care recipient and thus impact their care situation and lives. Examples include adult day care, overnight care (e.g. respite care), domestic help, home care, or sharing care within the network of the older adult [6, 7]. Technological support may also be used, such as home automation, communication and monitoring technology (e.g. domotica) [8, 9].
While research has been done into older adults’ support preferences [10–12], less is known about if, when and under what conditions they would opt to use support to relieve their caregiver (s). Although the different support forms obviously intend to positively affect the lives of caregivers and the older adults that they take care of, it should at the same time be acknowledged that some may conflict with older adults’ preferences and capacities [13, 14]. They may, for instance, prefer to be primarily cared for by a close informal caregiver [15], view formal care and support services as unnecessary, or resist them because they want to maintain a sense of normalcy [16–18]. Furthermore, in the case of technology, caregivers and care recipients can have different perspectives on its necessity, relevance and use [19].
The aim of the current study, therefore, was to obtain more insight into the perceptions, preferences and potential concerns about the use of support to relieve informal caregivers, from the viewpoint of the older care recipient. Such insights can be helpful to develop support and services for caregivers that are optimally aligned with the needs and preferences of older adults.
2. Materials & Methods
2.1. Design
This qualitative study among Dutch older informal care recipients, had three phases (Figure 1). In the first phase, pilot interviews showed that many older adults were unaware of available support options to relieve caregivers, or that they did not know whether their caregivers were in need of support. Consequently, they found it difficult to articulate their own support needs and preferences. To improve information quality, in subsequent phases we interviewed additional participants and preceded the interviews with a story completion writing task. Story completion can be used to explore target groups’ perceptions when they have limited direct experience/knowledge of a topic, by providing the participants with hypothetical scenarios or prompts to reflect upon [20, 21]. Through story completion, we introduced participants to different support forms they can use to relieve caregivers, and situations where the use of (extra) support is discussed. Participants “completed” the stories by writing or typing what they would do or prefer, if they themselves would be in this situation. After submitting the story completions, we conducted a story-mediated phone interview [22] to obtain additional insights into older adults’ views on using support, and their motivations and own experiences (Figure 1; phase 3).
2.2. Participants
For the pilot study (phase 1), recruitment took place through the own personal network of the research team and via snowball sampling. In phases 2 and 3, older adults were recruited via e-mail outreach, and via social media and newsletters of different networks and organizations for older adults throughout the Netherlands. Additionally, a flyer was distributed by the public library in two large Dutch cities. Older adults were eligible to participate if they: (1) were aged 65 years or older, (2) lived at home (i.e. not in a long-term care institution), and (3) received occasional or regular help from people within their personal network, such as their partner, child(ren), friend(s) or neighbor(s).
2.3. Data Collection and Procedures
For the story completion task in phase 2, participants could fill in either a digital or postal questionnaire. In the task, we asked each participant to reflect on all three hypothetical situations involving an older adult with care needs and his/her caregiver (Table 1). Three situations were prepared in order to address the commonly mentioned types of caregiver support in literature that may have an impact on the care situation of the older adult, namely: sharing care within the informal network and using formal support services (situations 1/2), as well as technological support (situation 3). We prepared a first version of the story prompts after multiple discussions with the research team, and after consulting three informal caregivers participating in an advisory board for this study. To verify that the situations were realistic and to further refine the prompts and questions, we then pre-tested the story completion task among six older adults. In phase 3, telephone interviews took place within a few weeks after turning in the story completions, and were audio-recorded with the participants’ permission.
2.4. Ethics
The study (VPZ-528) was reviewed by the Center for Clinical Expertise of the Dutch National Institute of Public Health and the Environment. The study did not meet the criteria of the Dutch Medical Research Involving Human Subjects Act, and was therefore classified as exempt from further ethical review. We performed the study in accordance with the ethics and principles of the Declaration of Helsinki. Depending on their preference, participants received either a digital or postal information letter and consent form about the study aim and procedures. Prior to participating, all participants provided informed consent by (digitally) signing the consent form.
2.5. Analysis
We used interview data and story completions from all phases as a data source. Interviews were transcribed verbatim and coded in MAXQDA (2020) using thematic analysis [23]. First, the first author became familiar with the data by reading through the transcripts. Initial coding was done by two researchers (E.V. and S.P.). The first three participants’ completions and interview data were inductively coded separately and then discussed, to develop an initial coding frame [24]. This frame was used as a basis to code further transcripts, while leaving room for additional codes to emerge. After every few transcripts, the codes and coding scheme were checked and discussed with S.P., and a third researcher, S.d.B. We then searched for potential (sub) themes, by looking at recurring items and topics across the dataset, resulting in an initial thematic map. We further refined and adapted the themes after multiple discussions between the authors, until consensus was reached on their coherence and clarity.
3. Results
3.1. Participants’ Characteristics
In phase 1, seven male and three female older adults participated, with ages ranging from 77 to 93 years. An additional 23 older adults participated in phases 2 and 3 (Table 2), with ages ranging from 66 up to 100 years. In one case, we interviewed the caregiver of an older adult with dementia; they had filled in the story completion exercise together. Most older adults had already been receiving informal care for several years (range: 7 months–over 10 years), and either lived alone or with their partner. They needed help in activities of daily living due to limitations of old age, or chronic or temporary health problems (e.g. heart problems, dementia, mobility problems). They received help with different tasks, such as administration, finances and computers, and household chores. Caregivers also paid social visits, went along on medical visits, provided transport and coordinated care. The caregiver(s) rarely provided personal care, such as washing and dressing. Participants most often received help from their child (ren) (in law), but also from partners, friends, or neighbors.
3.2. Themes
Three main themes were found: (1) Acceptance of (additional) care and support to relieve caregivers, (2) Prerequisites to comfortably use caregiver relief support, and (3) Considerations in the use of technological support. Each of these had several subthemes.
3.2.1. Theme 1: Acceptance of (Additional) Care And Support To Relieve Caregivers
Regarding the potential overload of their caregivers, older adults found it important that caring for them would not interfere too much with their caregivers’ own lives. Most older adults were therefore open towards the idea of using support to relieve their caregivers. Despite their general concern about their caregivers’ wellbeing, however, using caregiver relief support sometimes also conflicted with their preferences and values, which could lead to tensions in the acceptance of care and support.
(1) Fearing A Loss Of Independence. Older adults greatly valued being independent and living in their own homes. Therefore, for many of them, accepting the need for increased assistance would be difficult. It meant that they had to accept their fading abilities and potential loss of autonomy. In some cases, the wish to remain independent led to refusing particular kinds of caregiver relief support, or even to denying help altogether.
“But no, personal care is something I’d rather do myself. I’ve got a couple friends who are really dependent on that care. I think that’s terrible. I want to try to look after myself and not ask anyone else for anything for as long as possible.” (Female#20, 89 years).
Older adults who were initially dismissive towards accepting support, often did not reflect on the consequences of refusing support for their caregiver (s). Yet, others noted from their own experiences that different opinions between older care recipients and their caregivers on the necessity of (additional) support, could lead to friction and overload of the caregiver.
(2) Having A Preference For The Familiar. For other older adults, hesitations to make use of caregiver relief support stemmed from their preference to mainly rely on familiar support, such as from a close informal caregiver. Participants valued and appreciated the support from their caregivers, which gave them a sense of comfort and familiarity.
“Your kids, you’ve been around them since birth. You’re used to them. And, more importantly, they know you. They know your preferences, desires, habits.” (Male#27, 93 years).
They emphasized that acceptance of help from others than their loved ones is a time-consuming process and to successfully enlist additional support, time is needed to prepare them for a change in situation.
“The daughter [in Situation 2] can prepare her mother for the idea of enlisting outside help. That’ll give the mother a chance to get used to the idea and start giving it some thought herself. I think it’d be useful for the daughter to reassure her mother that she’ll keep visiting, but that this will simply take some of the burden off her.” (Male#6, 81 years).
For those who had not yet made use of support to relieve caregivers, unfamiliarity with some support forms, such as adult day care services or home care, could also form a barrier for use. For instance, they worried about to what extent their personal preferences and needs would be taken into account.
”I have not got a clue about how things work with adult day care services or overnight respite care. I’ve heard of them, obviously, and that made me think: not a chance. But maybe it’s a lot more pleasant and yes, they’d also take my preferences into account.” (Female#2, 76 years).
In the case of adult day care services, some older adults also preferred not to use it because they would be out of their familiar home environment.
(3) Balancing One’s Wellbeing With That Of One’s Caregiver. Despite some older adults’ hesitation to accept support, concern about their caregivers’ well-being could form an important reason to still substitute (parts of) informal care with formal care.
“You always expect far more from your children than they can deliver, and that’s something you need to watch out for. Obviously, my children are in their 60s now, still working, and they’ve even got children of their own. So you cannot expect too much from them, even if you cannot help doing so.” (Female#20, 89 years).
Another reason to accept caregiver relief support was to prevent relationship strain. Participants worried that the relationship with their caregiver would suffer without external help for a burdened caregiver. They emphasized that care should always be provided with love, and that caregiver overload could lead to irritations and dispute. Yet, at the same time, transferring tasks to others could also cause relationship pressures, due to the emotions and feelings of abandonment that may be involved for the older adult. Because of the potential emotional charge, open communication from the caregiver about the limits of their capacity was considered important.
“It’d be great if that daughter [in Situation 1 and 2] could say like “Mom, I’m struggling” […]. Without all kinds of emotions clouding everyone’s judgement, you know. Like “You do not love me anymore” or “All children do that for their parents” or things like that.” (Female#19, 76 years).
In case tensions between the caregiver and care recipient were high, older adults mentioned that involving an external person, such as a case manager, the general practitioner, or another health or social care professional may ease the process of accepting help. Friends of the older adult could also assist by sharing their own experiences with using support and their benefits.
“In my experience, you always need a bit of extra outside help in these kinds of situations [1 and 2]. Otherwise both mother and daughter will soon find themselves getting bogged down in the situation. In that case, some outside help to sort things out and look at the situation in an impartial way can help them come to realize that more care is needed.”(Female#8, 75 years).
3.2.2. Theme 2: Prerequisites To Comfortably Use Caregiver Relief Support
Besides being mentally prepared to use or try out additional or outside support, older adults mentioned several overarching prerequisites that had helped them in the past, or could help them in the future, to comfortably make use of available support options to relieve caregivers.
(1) Having A Trusting Relationship And Maintaining Autonomy. To use formal support, such as adult day care services, domestic help, or home care, having a trusting relationship with the professional and maintaining autonomy were considered important. Some older adults had already satisfactorily used some of these services. Different preferences existed for from whom they (would) like to receive potential extra support (professional caretakers or volunteers), or with which tasks they would prefer help. Sometimes, they preferred that certain tasks would remain with the caregiver, such as handling finances, paying social visits or accompanying them on medical visits.
Older adults mentioned that new caretakers should allocate time to building a personal connection with them, see them as a person, and address their needs and wishes. In this, they preferred having a regular caretaker rather than a new person each time.
“I would like people then who pay a little bit of attention to you. And that you notice that they come for you, and not that they come because they happen to have to earn money and eh... that it is a job for them. That’s also what’s holding me back a little bit, with getting that care.” (Female#16, 81 years).
Furthermore, they found it important to maintain their autonomy when using caregiver relief support, for example by keeping control of their own daily routines and rhythms. This meant that professional visits could be scheduled at convenient times, and that professionals should not show up unannounced, or at constantly varying times. Finally, they found it essential that they themselves were involved in decision-making about the choice of support.
“Yes, staying in control to some extent. That I still get to make the decisions, even if it is with advice from others. And maybe that’ll mean me having to make some concessions, which is fine by me. But I do not want to just hand my life over to someone else.” (Female#21, 75 years).
In the case of adult day care services (e.g. respite care), older adults often had reservations or sometimes even outright aversion to use it. Reasons were not yet feeling that this kind of care is necessary for them, a lack of interest (“I’m not one for joining clubs”), or the previously mentioned wish to receive care at one’s home. Others expressed concerns about getting activities imposed (“That feels forced”), having a mismatch with their needs and preferences (“I would not be able to make out what they say there. They do not spare a thought for the hard of hearing”) or the way they would be treated (“I hope they will not treat me like a child”). To a lesser extent, benefits were mentioned, for example that day care provides an opportunity to meet new people, be social and join in interesting activities. In this, they found it important that they had decisional autonomy, meaning that they would have a say in the offered range of activities, and could also decide whether or not to join.
(2) Having Available, Affordable And Accessible Support Options In The Neighborhood. Whether older adults would use support also depended on the (perceived) availability, affordability and accessibility of different options. Regarding availability, most older adults were satisfied with the available formal options close by. Older adults mentioned, for instance, that they would contact their GP, a case manager or local social worker to inform them about options, or would contact care and volunteer organizations directly. A smaller group, however, expressed worries about the availability of fitting health and social care options nearby. Furthermore, in their daily lives older adults heavily relied on assistance from their local informal networks, such as neighbors and friends. These networks were often seen as a pleasant option to relieve an overburdened (other) caregiver. However, for some older adults, a small personal network or a perceived lack of social cohesion in the community, was a cause for concern.
Older adults further mentioned the costs and affordability of additional support as a consideration, and that support outside their homes, such as adult day care services or other social activities, should be accessible enough. Both in terms of transportation (public transport access; arranged taxi service), and in terms of taking into account older adults’ limitations, such as being hard of hearing.
3.2.3. Theme 3: Considerations In The Use Of Technological Support
Lastly, older adults mentioned several additional considerations regarding the use of technological support.
(1) Balancing The Benefits And Drawbacks Of Technology. Older adults in our study had limited experience with using technology that facilitates their living at home and could assist their caregivers. Some made use of video calling to stay in touch with their caregivers, or had a portable alarm button to press in case of emergency. Attitudes regarding technology differed considerably. While some had affinity with and interest in technology, others would not consider using any form. Multiple factors contributed to their willingness to use technology. More so than in using formal services, older adults thought that technology provided more benefit for the caregiver than for themselves, which could hinder its acceptance and use.
Moreover, contrasting expectations about the use and difficulty level of technology between the caregiver and older adult, affected their inclination to use it.
“That’s the feeling I get, that they cannot understand that you’re no longer capable of keeping up. That they get annoyed if I’m slow to learn something on a tablet or cell phone, which leaves me thinking: “You think I’m still 50 or something...”” (Female#19, 76 years).
The caregiver and older adult thus had to find a balance between the benefits and drawbacks associated with technology for each of them. Some older adults were especially worried to operate or handle technology themselves. In these cases, technology should fit their capabilities and be user-friendly. For example, participants found small buttons and lettering often difficult, or worried about forgetting passwords, and breaking the technology.
(2) Trade-Off Between Feelings Of Security And Privacy Loss In Home Technology. An important consideration for using home automation and monitoring technology (domotica), was the trade-off between gaining a sense of security for the older adult and the caregiver on the one hand, and the older adult’s loss of privacy and control on the other hand.
“You need to consider how much privacy you’re willing to give up for your safety. I do think privacy is tremendously important, and yet I think that the technical possibilities of domotica are extremely important and interesting too.” (Female#8, 75 years).
Using portable alarm buttons was found acceptable by the majority of participants as this was seen as the least privacy invasive. In-house sensors or camera surveillance, were seen as considerably more privacy invasive and for most, the potential benefits did not outweigh the restrictive feeling of being constantly monitored. Neighbors keeping an eye out to check on their security and wellbeing, was often seen as a preferable alternative to such technology. Yet, if using sensors or surveillance meant that the older adult could live longer independently at home, for some, this type of technology still was an acceptable solution.
“Yes, the longer you can keep your independence, the better. If that comes with a bit of remote monitoring, then so be it. After all, having people under your feet all day long is not nice either.” (Female#11, 71 years).
In general, participants wanted to know how the collected personal data would be secured and stored. Finally, an important consideration in using technology was who would have access to the data or footage:
“And cameras, that partly depends on whether the caregiver is a professional or someone like my daughter. I would not want the latter as, well, if I’m coming out the shower then I’d find that a bit embarrassing. It’s a bit different if it’s a stranger, but I would not want my daughter seeing me like that.” (Male#15, 83 years).
4. Discussion
This study’s aim was to obtain a deeper understanding of the perceptions, preferences and potential concerns of older adults regarding the use of different support forms to relieve their informal caregivers. It shows that older adults find it important to prevent caregiver overload and potential strain in their relationship with caregivers due to this burden, which meant that they were, generally, open towards using (additional) support. Yet, sometimes using support was contrary to their own preferences, which is presumably why prerequisites for/concerns about support often related to their values (i.e. respect for autonomy, privacy, trust/establishing a trusting relationship, paying attention to human aspects in care). Support was sometimes even at the expense of their perceived well-being, emphasizing the importance of identifying older adults’ needs and values and taking these into account.
Finding an optimal balance between the needs of the older adult and their caregiver (s) can be challenging. An important area of potential incongruence, involved the appraisal of the caregiving situation and the perceived need for (additional) support. As was also found by others [10, 25], accepting help was part of an emotional process for older adults. It involves recognizing and accepting their increased dependency, and goes together with feelings of uncertainty about receiving unfamiliar support forms or from unfamiliar caretakers. At the same time, caregivers themselves can experience barriers in handing over parts of care, due to feelings of responsibility or even guilt [26–28]. Health and social care professionals may help caregiver (s) and care recipients to overcome hesitation, identify conflicting interests, values, and preferences, and discuss their respective feelings and wishes about these [29–31]. They may also play a role in the identification and (timely) mobilization of the older adults' personal network,to share the care with. Our study showed that older adults were open towards involving different professionals as a neutral third party, to help accept (additional) care and mitigate relationship strain. To successfully guide this process, however, research implies that a stronger focus is required in health and social care professionals’ education on developing competence in involving the family perspective [33]. Furthermore, research is needed on how divergent preferences can be best managed in practice, as empirical evidence on this topic is still sparse [33, 34].
How to retain the desired quality of care in accordance with their preferences and values, was a common important factor for older adults. As was found in other studies, good quality care had different meanings for different older adults [10, 35–37]. It sometimes referred to the relationship with the care professional and the way they are treated (e.g. with respect and dignity, as an adult person), while others placed value on service providers ensuring their executive and decisional autonomy and taking into account their personal needs (e.g. choice for activities, accommodating their daily rhythms). Not knowing what to expect and whether their preferences/values would be adequately taken into account, contributed to hesitations to use professional care. This indicates that more attention should be paid to tailoring services, and helping older adults to deliberate on and try out different options [30]. Professionals could do this by proactively providing information, and opportunities to get acquainted with different health and social care services and providers. In particular, this may encourage use of adult day care services, about which many older adults in this study were uncertain. Older adults who have already used some form of formal care, next to informal care, are more likely to use formal care in the future [38, 39]. This implies that helping people over that first threshold may positively impact use of caregiver relief support. In this, improving access to caregiver relief support and keeping it affordable may further facilitate support use.
Various additional personal, practical and ethical considerations played a role in using technology, such as home automation, communication and monitoring technology. Technological solutions have been hailed as a promising route to decrease caregiver burden by supporting independence and quality of life in older adults, although evidence of their effectiveness has sometimes yet to be established more clearly [8, 40, 41]. Our results show that from the older adults’ perspective, technology use to assist the caregiver is not self-evident, and the added value for themselves should be more clearly demonstrated. It is therefore important that older adults and caregivers take time to identify and discuss the potential implications and ethical dilemmas involved, such as the dual nature of surveillance, which can be experienced as both constricting and enabling [42, 43]. Because caregivers themselves also have support and informational needs on how to successfully implement technological solutions [14], assistance in this is vital and should target both the older adult and caregiver.
4.1. Methodological Considerations
Using a story completion method combined with story-mediated interviews provided us with an in-depth exploration of important aspects for older adults in using support to relieve their caregiver (s). Compared to the pilot interviews, the hypothetical story completion exercises provided more context and examples for participants who were unfamiliar with the topic or some support forms, which could then be explored alongside their own experiences in subsequent interviews. In general, we found that by imagining themselves in the described circumstances, participants were better able to articulate their needs and preferences, even though they themselves often had somewhat different care situations. We included older adults who received varying forms of informal care, but did not necessarily need to have already used caregiver relief support. A few older adults with less intensive care needs, however, found it more challenging to reflect on a potential future where they would need more care, which was a limitation of this hypothetical approach. For future research, the role of having varying care needs and health conditions on the preferences of older adults for caregiver relief support can be further explored, and may produce further targeted directions for policy and practice.
5. Conclusion
Older adults find it important to prevent overburdening of their informal caregivers, and for this purpose were willing to consider different formal, informal and technological support forms. While older adults were concerned about caregivers’ wellbeing, this study also showed that the employment of support to relieve them can be accompanied by concerns for the older adult, and tensions within the caregiver–care recipient’s relationship. While these tensions cannot always be completely resolved, it is important to jointly identify and discuss these, including the added value of support and how to balance their respective, preferences and values (e.g. respect for autonomy, privacy, establishing a trusting relationship, paying attention to human aspects in care). To support the care recipient and caregiver in overcoming different perspectives and possible reservations, assistance from the older adult’s network, and health and social care professionals is important. The use of caregiver relief support may further be promoted by providing information and opportunities for older adults to try out different options to ensure that they can make well-informed decisions about which support forms would fit their situations best.
Data Availability
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available as they contain information that could compromise the privacy of research participants.
Additional Points
What is known about this topic: (i) Informal caregivers make an important contribution to the care and support of older adults living at home, but can become overburdened. (ii) Some formal, informal and technological support services aimed at relieving informal caregivers directly target the older adults’ care situation, and using them may therefore impact older informal care recipients’ lives. What this study adds: (i) Older care recipients acknowledge the importance of using support services to relieve informal caregivers, and were generally open towards using them. (ii) Yet, older adults are also concerned about how such support may conflict with their interests, preferences and values (e.g. respect for autonomy, privacy, having a trusting relationship with caretakers). (iii) To help balance respective preferences and values, assistance is required from health and social care professionals.
Conflicts of Interest
The authors have no conflicts of interest to declare.
Authors’ Contributions
Conceptualization: Eline Vos, Simone de Bruin, Allard van der Beek and Karin Proper; Formal analysis: Eline Vos, Simone de Bruin, Suzanne Pees; Investigation: Eline Vos; Writing–original draft: Eline Vos; Writing–review & editing: Simone de Bruin, Suzanne Pees, Allard van der Beek and Karin Proper. All authors have read and agreed to the published version of the manuscript.
Acknowledgments
The authors thank the participants for sharing their views and experiences. The authors also thank Maaike van Gameren for her assistance in conducting the pilot interviews. This research was funded by the Strategic Program RIVM (Dutch National Institute for Public Health and the Environment), grant number S/040001/01.