Design Opportunities for Care Transitions in Dementia: Understanding Informal Caregivers’ Experiences Through a Practice-Informed Approach

The transition from home to formal residential care is described as stressful and emotionally difficult for people with dementia and their informal caregivers. While HCI research investigated how technology supports people with dementia at home or in formal care, there still is a need to understand how technology can support care transitions. This paper presents a practice-informed approach to gather insights collaboratively between care professionals and HCI researchers. We interviewed 42 informal caregivers of people with dementia to uncover their experiences before, during, and after care transitions. Our findings reveal how informal caregivers were: 1) navigating hurdles of information on care transitions, 2) caught up in the evolving challenges of informal caregiving, and 3) shifting from uncertainty in decision-making to acceptance of admission. Next, we formulate six design opportunities to support transitions in dementia care and encourage HCI researchers to pursue a practice-informed approach to address societal challenges in dementia.


INTRODUCTION
People with dementia experience a progressive decline in cognitive and physical abilities due to underlying neurodegenerative conditions such as Alzheimer's disease [3].People in the early stages of dementia commonly live at home independently, supported by informal caregivers in activities of daily living, such as cooking, personal hygiene, or household chores [65].As dementia progresses, the care needs of people with dementia increase and become more demanding for informal caregivers [14].When overburdened informal caregivers experience emotional stress and fatigue, the person with dementia will typically transition from home to formal residential care [1].This transition occurs when 1) the person with dementia has reached a stage where they require more constant supervision or specialized services that cannot be provided at home, 2) there are significant safety concerns at home, such as wandering, falls, or an inability to manage medications properly, or 3) the family caregiver is no longer able to provide the level of care required due to physical, emotional, or logistical challenges [64,65].
The transition from aging at home to formal residential care is widely reported as hectic and stressful for people with dementia and their informal caregivers [1,25,74].Research has highlighted how well-prepared and smooth transitions reduce stress and positively influence the quality of life of people with dementia and their families [6].However, people with dementia and their family caregivers tend to resist transitioning from home to residential care and prefer to remain at home as long as possible [61].Multiple barriers are preventing a timely and smooth transition to formal residential care.For example, formal care spaces are not always available when needed due to high demand [46].Other research also reported a lack of clear communication and information concerning the procedure and options from care professionals [27,74].In addition, people with dementia and their caregivers experience emotional stress as they prepare for and adjust to a new living condition [6,42].Thereupon, the decision to transition to formal care often falls upon the informal caregiver, burdened by the physical and emotional stress of caregiving [47] which often results in feeling guilty of institutionalizing their loved one [62].Informal caregivers frequently aim to offer support at home for as long as possible, occasionally beyond their capacity, leading to subsequent health issues for themselves [58].
Technology can play a role in alleviating stress for informal caregivers and smooth the transition to formal residential care.In the field of HCI, there have been numerous studies on how interactive technologies and online services can support the wellbeing of people with dementia and their caregivers in providing assistance in activities of daily living [22,75], supporting communication [36,43,67], seeking online information or support [20,36,37], or offering leisure activities [11,33,69].These studies address important challenges in the context of dementia, set in both home and residential care environments.However, there is limited work on how technology and accompanying services can support the care transition process regarding moving from the home to a formal residential care setting.For example, limited reports are available regarding accessible applications or online services that provide clear information and guidance for informal caregivers regarding decision-making or emotional support before, during, and after dementia care transitions [44,64].Additionally, there is limited research on technology to cater to increasing caregiving needs as dementia progresses or services to smooth the transition to formal care [63].Therefore, more insights are needed into how technology could support these experiences and challenges across various stages of dementia and care.
In this paper, we address the following research questions: 1) what are the experiences and challenges of informal caregivers of people with dementia before, during, and after a transition from home to residential dementia care, and 2) how can technology support these transitions in dementia.We adopted a practice-informed research approach in close collaboration with care professionals [15].Following this approach, we conducted an interview study with 42 informal caregivers at four different moments of the transition process: 1) immediately after the diagnosis of dementia, 2) while providing informal care, 3) after signing the relative with dementia up for formal care and finally, 4) after admission of the relative with dementia to formal care.To conduct this study, a team was formed between HCI researchers and care professionals.The role of the care professionals was to conduct the interviews in the context of current challenges in dementia care practice.Importantly, we do not intend in this study for informal caregivers to serve as proxies for people with dementia but as primary stakeholders who are the main point of support and care for people with dementia, often leading the decision-making process in transitioning from home to formal residential care settings [47].
The data gathered through the practice-informed approach was analyzed to reveal how informal caregivers were: 1) navigating the hurdles of information on care transitions, 2) caught up in the evolving challenges of informal caregiving, and 3) shifting from uncertainty in decision-making to acceptance of admission.Based on these findings, we formulate six opportunities for technology to support care transitions.These opportunities address decisionmaking and the dynamics of the dementia journey, and encourage tailored and accessible information.Finally, we highlight the value of a practice-informed approach in HCI research to allow technology design to impact policies, care systems, and the continuum of dementia.With these insights, we aim to contribute to the future research agenda in HCI to address the unique needs and challenges associated with care transitions in dementia care and to closely involve both formal and informal care practice at such critical junctures.

BACKGROUND 2.1 Lived Experiences of Care Transitions in Dementia
Dementia is a progressive condition in which the need for support in daily tasks and personal care gradually increases [49].Often a spouse or a child provides informal care to enable a person with dementia to live at home [65].Support services can alleviate informal caregivers, such as day program activities [45], or home care services, such as housekeeping and help with personal hygiene [13].However, when a person with dementia needs around-theclock assistance, transitioning to a formal residential care setting is often recommended [16].Reasons for an informal caregiver to feel overburdened with their task include emotional exhaustion, lack of understanding of the care system, and need for support [1].Furthermore, problems with social networks, safety, and self-sufficiency mean that someone with dementia can no longer continue living at home [65].
Both informal caregivers and people with dementia want to stay home for as long as possible, seeing their home as a foundation for their lives [23].However, the transition to residential care is not without risk, as relocating people with dementia to a care home has been associated with an increased mortality risk [4].Conversely, 98% of informal caregivers experience problems while supporting someone with dementia [76].Often, spousal caregivers move towards signing their relative with dementia up for formal residential care too late, when they are already exhausted to provide sufficient care [47].Providing informal care for someone too long may result in caregiver burnout, where informal caregivers are in need of care themselves during or soon after fulfilling the caregiving role [2].Therefore, a well-established partnership with healthcare professionals is needed to receive sufficient support and information to manage transitioning from home to formal residential care [27,63], However, this is not always available or in place.Recent research also shows that the transition to the care home provides relief and more freedom for spousal informal caregivers, but also results in an increased sense of emotional loneliness due to the lack of an intimate relationship [30].Supporting the transition from home to formal residential care with suitable tools can alleviate pressure from the care system and improve the lives of those living with dementia.

Need for Interventions Supporting Care Transitions
A lack of clear information pathways for informal caregivers leads to poor communication with care professionals and fragmented or scattered information sources, and so increases the burden for informal caregivers [57].There is a clear need to support people with dementia and their caregivers through the journey from diagnosis to care [63] through personalized information and support interventions that increase confidence in making decisions about formal residential care placements [64].Most interventions to support the care transition focus on providing individual or group-based counseling to informal caregivers provided via phone, email, or in person [53].Aside from management systems for digital waiting lists, e.g., [46], few digital interventions are developed to address such transitions to higher levels of care in dementia.HCI research on care transitions in general is sparse and scattered in different research topics, such as older adults [42] or stroke survivors [56].For people with chronic conditions, multiple studies address the transition from clinical settings to the home with technology, such as supporting stroke survivors to participate in activities of everyday life [56].Other examples focus on the role of technology in creating a sense of home and familiarity to adjust to new living arrangements [66], and on objects that follow the transition process as support [42].Even though dementia has been an emerging topic of interest in HCI, little research focuses on how technology can support or smoothen the transition from home to formal residential care.

Informal Caregiving in HCI
In recent years, technology and HCI research has evolved to prioritize the lived experiences of those with dementia [31,52,67,71].These works address the social and emotional needs of people living with dementia through technology by providing agency [24], social activity [68] or empowerment [22].Furthermore, this research established inclusive approaches where people with dementia are directly involved and valued as active contributors in the design or research process [28,41].In addition, HCI research has addressed the struggles of informal caregivers in balancing caregiving duties with their own physical and emotional needs [12].For example, informal caregivers require support in information finding, care coordination and learning from peers [59].Recent HCI studies on dementia also involved the perspectives and lived experiences of informal caregivers to design technologies that fit the home environment of people with dementia [11,29,33,36,67,68].Informal caregivers are crucial in making assistive interventions work in the everyday lives of people with dementia [5] as they tailor these interventions to their specific life situations [26].
Therefore, an increasing body of research has addressed how technology can support informal caregivers' daily challenges and experiences.There are various ways technology can support informal caregivers directly, for example in care planning [75], communication and behavior support [36,67,70], safety support outdoors [9,72] and to promoting leisure time [11,68].Informal caregivers CHI '24, May 11-16, 2024, Honolulu, HI, USA can use social and online support systems for self-management as the dementia of their loved one progresses [35].For example, family caregivers use online communities to exchange experiences or information between peers [51], or share best practices for caregiving and seek emotional support [37].Providing relief or support to caregivers also supports them in sustaining their caregiving role longer [13].Involving informal caregivers' perspectives also provides rich insights into the everyday living conditions at home [17].Therefore, this paper contributes to existing work by tapping into the lived experiences and challenges of informal caregivers to improve the quality of care and life of people with dementia.

METHOD 3.1 Practice-Informed Research Approach
We adopted a practice-informed research approach to ground the study in the expertise of care practitioners and existing challenges in care practice [15].This approach goes beyond traditional humancentered design with stakeholders since it positions care practitioners as co-researchers.The study was executed in close collaboration between care practitioners and HCI researchers.More specifically, the care professionals actively formulated the initial research aim regarding care transitions and proposed interview protocols based on their professional experiences.The care professionals conducted the interviews for this study with informal caregivers of people with dementia.We aimed to elicit more in-depth responses from the participants related to interactions with the healthcare system, as the questions were based on the practical expertise of the care professionals.
The care professionals were part of a regional innovation consortium in the Netherlands consisting of three care organizations.In the Netherlands, residential care is provided by semi-public institutions and available for everyone equally, as additional financial contributions are only required depending on income.Residential care home placements can be requested based on a 'care indication level', determined through a care needs assessment performed by an independent governmental institution based on objective criteria, such as safety concerns or need for round-the-clock care.Anyone can request this assessment procedure to receive a higher 'indication level', but it is often initiated by the case manager or a care professional.A waiting list system [46] is used in the Netherlands to prioritize formal residential care placement.Within this context, care organizations nationally reported that informal caregivers were, as a precaution, enrolling their dementia-afflicted relatives onto waiting lists for formal residential care admissions increasingly early.Placing people earlier on a waiting list causes problems when others have a more urgent need for placement.Therefore, the problems concerning the misuse of waiting lists were prioritized by the care professionals in the regional consortium as a starting point for the interview study.The overarching goal of this study was to find opportunities for novel care interventions for people living with dementia and their caregivers.
A team of four care professionals from the innovation consortium conducted interviews with 42 informal caregivers.These care professionals work as innovation managers or project leaders, responsible for implementing new care processes or technological interventions in practice.Two care professionals [third and fourth author] supported the writing of this paper by reflecting on the process and findings during meetings with the other authors.The HCI researchers [first, second, and fifth author] provided a novel lens for the analysis of the interview data of all sets and interpreted the data to propose opportunities for HCI and technology to support informal caregivers.

Interview Procedure
The team of four care professionals conducted all 42 interviews over the phone, lasting between 15 and 45 minutes.The care professionals reached out to participants as part of the regional innovation consortium, consisting of multiple care organizations.The care professionals were not personally familiar with the participants to avoid potential biases.The care professionals conducted the interviews in four sets and fine-tuned the questions between each set scaffolded by previous insights to address emerging relevant topics and challenges.This iterative interview study design [38] allowed us to explore emerging topics or issues raised by participants and uncover a wide range of experiences of informal caregivers in times of transition.
Four sets of interviews were conducted in the following order: Set 1 (Waiting list), Set 2 (Home), Set 3 (Admission), and Set 4 (Diagnosis).Initially, the interviews targeted caregivers of people with dementia who had recently subscribed to a waiting list (Set 1).Based on the initial coding of preliminary results, the scope was further extended to multiple interview sets at various moments in the transition process.These moments were receiving care at home (Set 2), after the person with dementia moved to a residential care facility (Set 3), and back to after the diagnosis (Set 4), as visualized in Figure 1.The order of each set concerning the transition process was not pre-planned but based on the preliminary insights after each set.Participants in the same set received the same interview questions.After each set, the interview questions were adapted based on the initial coding of the transcripts to focus on emerging themes (see Table 1).From the first set onwards, the care professionals coded the collected data pragmatically and adjusted their interview guide for the next set.

3.2.1
Interview Set 1: Subscribed to the Waiting List.The initial focus of the interviews was to explore the misuse of the waiting list system, which the care professionals in the regional consortium prioritized as the most urgent challenge to address the overburdened care systems.The first set of interviews targeted 10 informal caregivers whose relatives with dementia were recently subscribed to a waiting list for care home admission out of precaution.Participants P1W-P10W received the same questions addressing the overall experience of informal caregivers related to workload and care tasks, as well as the motivation and experience of subscribing their relative to the waiting list for care home admission (see Table 1).The initial coding from the team of care professionals was focused on the changing role from relative to caregiver and how the care load increases over time to the point that the informal caregiver cannot sustain the care demand.

Interview Set 2:
Informal Care at Home.Based on the initial codes from Set 1, Set 2 aimed to explore the impact of the changing relationship between informal caregivers and their loved ones with dementia, including cases in which the relative with dementia was not yet registered on the waiting list.Participants P11H-P22H received questions that addressed informal caregivers' perception of how the relationship changed, how this impacted their personal lives, and which support the informal caregivers received from a wider social network, such as family and friends.The care professionals were curious about what could be provided for these informal caregivers to smooth the transition.The initial coding of Set 2 by the team of care professionals resulted in insights related to lack of communication between the relative with dementia and their informal caregiver, informal caregivers being pushed to the limits, and how dementia develops to such an extent that caregivers can no longer cope with their role and their loved ones are admitted to formal care.

Interview Set 3:
After Care Home Admission.The codes emerging from Set 2 illustrated the need to understand the mechanics of informal caregivers going over their limit in providing care, causing a sudden or challenging transition to residential care for a relative with dementia.Therefore, Set 3 targeted informal caregivers after the transition of their relatives with dementia to a formal care setting.The questions of Set 3 aimed to let the informal caregivers P23A-P32A reflect on the lack of support, problems, and struggles that eventually led to the care home admission (see Table 1).The initial coding of Set 3 by the team of care professionals resulted in new codes referring to a lack of knowledge, experienced emotional burden, missing information, and false expectations of informal caregivers regarding the care system, which was often only realized too late.

Interview Set 4: After Diagnosis.
The initial codes from Set 3 showed a lack of information and false expectations in the early stages of dementia concerning the role of the informal caregiver.Therefore, Set 4 addressed caregivers of relatives with dementia who recently received the diagnosis.P33D-P42D were asked about their information needs and the availability and accessibility of current information sources.

Participants and Recruitment
The care organizations recruited 42 informal caregivers in total, of which 14 were spousal caregivers, 26 adult-child caregivers and 2 adult children-in-law (Table 2).Set 1 (Waiting list), Set 3 (Admission), and Set 4 (Diagnosis) each involved 10 participants and Set 2 (Home) consisted of 12 participants.For each set, the care organization selected informal caregivers that matched the target group description of each interview set (e.g., caregivers whose relatives moved to a care home in Set 3).In Sets 1 and 2, a mix of spouses and children was included to gain a more general view of the caregiving process.In Sets 3 and 4, no spouses were included as the initial coding of the care professionals revealed that interventions or support services for remote informal caregivers, often children of the person with dementia were most promising.The care professionals found that adult-child caregivers were more able to reflect on the transition process from a distance, unlike spousal partners, who had more direct emotional involvement and reported more on personal issues, such as burnout complaints or stress.The number of participants in each set depended on practical constraints, such as available data on caregivers or time constraints of the interviewers, and was also based on the re-occurrence of overlapping responses.Eligible participants were contacted via telephone by a care professional who explained the study goal and interview procedure.Each participant was asked for oral consent before participating

Data Collection and Analysis
The care professionals, i.e., the third and fourth author of the paper, were involved in conducting the interviews and iteratively covered various perspectives of informal caregivers in the transition process.
The HCI researchers, i.e., the first, second and last author, took the lead in further conducting an inductive thematic analysis [10] on the data corpus of all interviews.The first and second author familiarized themselves with the anonymized transcripts marked with the initial codes of the care professionals.Next, the first and second author re-coded the transcripts with new codes consistent across all interview sets.These codes were further clustered and grouped into overarching themes by the first author and later iterated by the second author.The initial themes were further discussed and refined with the last author, who checked the themes were consistent with the quotes and relevant to the research questions, particularly regarding how technology can contribute to the transition from home to formal care in the context of dementia.Finally, the themes were presented to the care professionals, i.e., third and fourth author, during a meeting, after which their comments and remarks were included in the final themes.This analysis provided an outside-in perspective on the initial coding by the care professionals.

Ethics
Approval to conduct this study was granted by the care institutions involved.Permission required voluntary inclusion and informed consent from informal caregivers as participants in the study.Care professionals conducted the interviews and anonymized the data before sharing it with the university.The study results were shared with the care organizations and the participants via the communications channels of the care organizations.

FINDINGS
Our findings reveal how informal caregivers 1) are first navigating the hurdles of information on care transitions; 2) get caught up in the evolving challenges of informal caregiving, and 3) later shift from uncertainty in decision-making to acceptance of admission.

Navigating the Hurdles of Information on Care Transitions
Our data revealed a lack of accessible information resources that were: "comprehensible for all." [P37D] Mostly, the participants following the diagnosis of their loved one with dementia expressed: 1) the need for specific information on various aspects of the transition process, 2) the preference for receiving information in person, and 3) the challenges in accessing information online.
4.1.1Information Needs During Care Transitions.Participants expressed a need for information regarding the: 1) care system, 2) coping strategies, 3) progression of dementia, and 4) caregiver experiences of peers.
1. Care System.Participants felt left in the dark and indicated the need for information on the care system and how to request support services throughout the process.One participant vented frustrations on how care organizations do not provide sufficient information on the care system: "What happened to me there was really a mess.[. ..]I just didn't know what to consider, arrange and what was coming our way.That process was very unclear. .

." [P34D]
As a result, informal caregivers must figure out how the care system works on the spot, adding additional workload to the already high care load: "You discover all that during the process.And that makes the process very difficult." [P35D] 2. Coping Strategies.Participants wanted more information on coping strategies for dealing with challenging situations that can occur during everyday life as they currently experience a lack of knowledge on how to respond or interact with people with dementia.Multiple participants expressed the need "to get a point of reference and to have knowledge of dementia, to be able to deal with it." [P33D] For example, one caregiver explained a strategy she learned to cope with her own frustrations: "I sometimes got angry with my mother, [and said] 'how could you not know that.'  4. Caregiver Experiences.Multiple participants indicated that they wanted to learn from "peers who are further along in the transition process" [P35D], as they feel others in their social network might not understand what they are going through: "People who experienced the same thing understand it, others who have not experienced it do not", as mentioned by [P12H].Therefore, participants actively looked for experiences from peers: "[it helps] to figure out what other caregivers do, but then you have to see how this works in your own situation, each time again." [P38D] In contrast, two participants were explicitly not in favor of receiving information and experiences from peers, as this could be emotionally confronting: "I don't need to see other people's misery." [P39D] Another participant also preferred objective and scientific information rather than subjective experiences from peers: "I am careful when opening websites, I prefer not to read people's opinions.I prefer neutral information.Quality information that you can assume is correct" [P36D], illustrating that the need for information is diverse.

Preference for Receiving Information in Person.
Participants indicated they received information from multiple sources and were often "overwhelmed with information from all fronts." [P38D] These sources range from paper "books" [P33D] or "flyers" [P42D], to receiving information in person from the "general practitioner" [P38D] or "case manager" [P34D].Participants especially preferred receiving information from people as a source of information: "I don't like the computer, I prefer it in person, I take notes myself and I can ask questions." [P37D] One participant reflected on receiving detailed and sufficient information in person: "The case manager had a lot of information, and the GP also cooperated well.I didn't receive a brochure, but that didn't matter because the case manager informed me well.At least I didn't miss anything."[P25A] In contrast, physical meetups or events for informal caregivers were not preferred by the participants right after the moment of the diagnosis: "Those programs and meetings about dementia are not something I would attend anytime soon.Conversations with professionals certainly provide peace of mind." [P33D] Also, participants mentioned that extensive training programs for informal caregivers were too time-consuming: "I thought that was interesting.But when I discovered it involved 5 afternoons, I dropped out." [P34D] 4.1.3Challenges in Accessing Online Information.Many participants used online resources early on to get additional information about dementia: "You automatically start looking for information, which is also obvious in this day and age because the internet is easily accessible." [P37D] Participants wanted to understand what they were facing and were "triggered to look up information.You want to know what you will face in the future." [P38D] Various online resources were accessed by participants, for example, the "website of the Alzheimer Netherlands Association" [P36D], "care insurance websites" [P37D], or as a participant: "searched information via Google." [P25A] One participant also mentioned that the family did not want to overburden the General Practitioner as they were looking for information online: "We mainly search the internet a lot.It sometimes feels a bit stupid always to call the doctor with questions.We'd rather not do that." [P42D] Participants also specifically searched for additional information online when other sources were insufficient: "I started looking for information on the internet.We had someone come to our home [to inform us] about dementia care, and he also provided information, but it was not enough.

" [P35D]
However, participants reported challenges in finding information online: "They say about everything: just look at the website.But sometimes I just don't understand it." [P2W] Multiple participants found online information overwhelming: "Online is a very large CHI '24, May 11-16, 2024, Honolulu, HI, USA environment, and you can keep searching.Sometimes, you can't see the forest for the trees." [P33D] Furthermore, one participant remarked online information can be conflicting: "It is especially difficult if you receive conflicting information.What else should you trust?" [P35D] Echoing informal caregivers who found the overload of information challenging, some participants mentioned they felt at risk of missing essential information due to this abundance of availability: "You often miss essential information because there is so much out there." [P42D]

Caught Up in the Evolving Challenges of Informal Caregiving
From our findings, we identified 1) an increasing care load for informal caregivers and 2) changes coming with the role of informal caregivers.
4.2.1 Increasing Care Load.Participants in all sets described how the workload of informal care grew increasingly heavy over time as the ability of the person with dementia reduced over time: "We try to wash the dishes and work in the garden together, but this is becoming less and less.He wants to do it, but it is becoming less successful." [P9W] Some participants reported how the person with dementia was still involved in some household tasks: "He still does the loading and unloading of the dishwasher, mowing the lawn, ironing white laundry, taking out the trash, and more." [P5W] Yet, many participants observed challenges with activities such as "cooking" [P4W], "doing groceries" [P31A], "personal hygiene" [P9W], or "cleaning the house" [P25A], which can even lead to safety issues: "I had to turn off the stove with an empty pan on it twice in one afternoon, so I switched off the gas."[P11H] Furthermore, multiple participants described how they observed a lack of initiative in the person with dementia.One participant described: "The initiative is gone.My mother no longer does anything [. ..] sits in the chair all day.She no longer does things she used to enjoy." [P11H] In addition, participants reported emotional struggles when witnessing that memory, recognition, and ability slowly diminish in gradual steps: "It's getting worse, slowly.It changes every time.It's going backward in steps.In the beginning, she could do everything, like setting and clearing the table.She can no longer do all that, it has gradually become less and less." [P14H] On top of the physical and emotional toll, the administrative tasks also weigh heavily on the informal caregivers: "The administrative tasks are worse than expected, regarding how much it is."[P11H].

Changing
Into the Role of Caregiver.Multiple participants experienced a changing role in their relationship with the person with dementia over the course of the disease process: "The roles have been reversed two years ago.I used to do nothing in the house.I had a busy job.And now it's different.I had to learn a lot, making beds, washing, cooking [. ..]Now I also have to tell my wife what to do." [P7W] Participants providing care to a parent with dementia described difficulties in their changing role, not looking forward to visits anymore since the main purpose has become caregiving: "You would do anything for your mother, but it is becoming an obligation.Otherwise, you would just occasionally visit her, but now it is no longer a 'fun' visit.You are in a caring role, [. ..] not a daughter, but a caregiver." [P2W] Furthermore, one participant expressed feelings of loss as the person with dementia experiences significant changes in behavior or personality: "I miss my mother, my buddy, someone with whom I could shop and talk about the children."[P12H] Confronted by the progression of dementia, participants described their worries about not knowing what to expect next: "You are just unsure whether things will continue to go well."[P2W] Adult-child caregivers reflected in hindsight that as the care demands grew, there was little personal time left: "You are 'on' 24/7, constantly busy, receiving calls, arranging things, the work really has an impact on your private life [. ..]Your whole life really revolves around caregiving. " [P30A]

From Uncertainty in Decision-Making to Acceptance of Admission
The participants in all sets experienced difficulties in decisionmaking regarding a care home transition as they reported challenges regarding: 1) timely decision-making, 2) negotiating complex trade-offs, and 3) acceptance of fitting care environments.

Timely Decision-Making.
The rising care burden and long waiting lists were a source of uncertainty and doubt, as expressed by participants who subscribed their relative with dementia to the waiting list out of precaution.Especially regarding the availability of a place in formal residential care when they would not be able to provide care anymore: "Suppose something happens to my mother, would there really be a place for her? Overall, participants expressed that deciding on the right moment to transition a person with dementia from home to formal residential care was challenging, especially since many informal caregivers underestimated their current situation, a perspective for which a participant warned: "If you think you can still arrange it yourself, then you are already too late." [P32A] These difficulties with making a timely decision were also illustrated by participants who struggled with the tension between missing their loved one with dementia and reaching their breaking point regarding moving forward with a placement: "You don't want to miss your wife.At the same time, I just don't get a night's sleep anymore.That is very difficult." [P7W] In that sense, for some participants: "admission is the last option, only if I can't do it anymore." [P10W] Similarly, a participant also strived to provide informal care at home as long as possible: "I want to be with him as long as possible.It's just a really hard decision for me too.You don't want to have to say: 'you have to leave tomorrow."' [P15H] 4.3.2Negotiating Complex Trade-Offs.Participants indicated that their relatives with dementia would prefer to remain living at home.However, this situation can pose a serious strain on the informal caregiver: "I hold it off as long as possible.[Moving to a care home] is the very last possibility.I want to [provide care] for as long as possible." [P10W] In contrast, one participant expressed feeling more at ease when their relative would move to formal care: "But if she lived in a care organization, that would be very reassuring." [P2W] Similarly, a participant reported how an incident was the reason for moving their relative to the care home, which also provided relief: "The fall was a blessing in disguise.It accelerated the admission to a formal residential care home."[P27A] These incidents are flagged as crisis situations, and then options for formal care become available earlier in the Netherlands.However, differing views between the person with dementia and their informal caregiver can lead to conflicts: "[It gives] many frustrations.My mother absolutely does not want to move.[. ..]We also avoid that topic because it always ends in a fight." [P11H] These examples illustrate how misalignment and disagreement can complicate the decision-making process: "She doesn't want to move, but we think if she falls again, she should." In addition, the available options of formal care environments within the care system do not always match the needs of the person with dementia.For example, one participant explained that the family found formal care environments not suitable to the needs of their relative: "We went to have a look, and we were shocked by the care departments, which was also due to the lack of liveliness, [. ..] that did not match my mother's needs at all.She suffers a lot from dementia but is still very active and full of interaction." [P35D] One participant described how she prevented the hospital from moving her mother to formal residential care: "She really wanted to go home.In the hospital, they wanted to admit her to a closed ward, but I put a stop to that.They really didn't agree at the hospital and told us 'don't bother coming back."' [P16H] Such a comment from a respected medical institute can instill insecurity and uncertainty in informal caregivers.

Acceptance of Fitting Care Environments.
Participants reflected on how they were more at ease after the care transition and, in hindsight, positive about the transition to formal residential care.One participant indicated how the family was: "satisfied with my father's care, so we can let go of that reasonably well." [P27A] Positive experiences with the care home also led to an easier acceptance by the informal caregiver: "She is very comfortable in her place, she is entertained, and she does a lot, and that is very nice for her.And I couldn't have done better." [P25A] However, a participant also shared their feelings of responsibility and duty to care for the person with dementia and stay socially engaged after transitioning to a formal care home: "So she now lives in the care home, but somehow, I still have that feeling that I have to take care of her.I still visit a lot." [P31A] This response also illustrates how informal caregivers aimed to maintain social engagement with the resident after the care home admission.
Participants reported how a care home admission brought them peace of mind but also enhanced their family relationship with the person with dementia: "Now that she's actually admitted, she's so sweet.She hugs, smiles, and is so warm.It's that you almost think she really couldn't have lived at home anymore." [P31A] Therefore, when there is a good fit with the care home, people looking back at the process recommend transitioning to formal residential care earlier: "My father said they [father and mother] should have moved to the care home much sooner while he really didn't want this before.Something bad had to happen to both [father and mother] before they were admitted and then it gets hectic and stressful.It's hard to put pressure on your parents emotionally." [P26A].

DISCUSSION
Our practice-informed research approach uncovered how informal caregivers experience and deal with different phases of the care transition related to the progression of dementia.We discuss these findings considering recent developments in HCI research in dementia, presenting six design opportunities for technology addressing transitions from home to formal residential care.Based on our participant sample, these opportunities largely apply to remote or adult-child caregivers yet do not fully exclude spousal caregivers.Next, we highlight how a practice-informed approach offers value for HCI research beyond designing and evaluating artifacts in care settings, to influencing care processes and practices.

Design Opportunities for Technology to Support Care Transitions
Based on our findings, we identify design opportunities for technology to support decision-making and dynamics in the dementia journey through: (i) dynamic care coordination platforms, (ii) decision support systems for alignment, and (iii) soft landing in residential care.Furthermore, technologies can be employed to support tailored and accessible information through (iv) situational information to manage expectations, (v) personalized information resources, (vi) support from experienced peers.

Decision-Making and Dynamics in the Dementia Journey.
Gradual cognitive decline is an inherent characteristic of dementia and poses challenges for technology to address specific problems of people with dementia in time, resulting in a need for continuous adaptation to current abilities [39,67] or to sensory and motor skills [21].Similarly, our findings indicate that adaptation should also be a characteristic of supportive technology for informal caregivers with continuously changing needs.Existing research has primarily addressed care home transitions at fixed focal points of the transition process, such as after diagnosis [57], during decision-making [47,64], or after placement in residential care [7,74].Therefore, our findings contribute to existing research as our themes cover multiple points in the process, addressing caregiving from the early to late stages of dementia.Based on these findings, we argue that support and technological interventions cannot simply target a single phase in dementia, yet should address dementia as a continuum from diagnosis to formal care home admission.
(i) Dynamic Care Coordination: Our findings reveal across the data sets how informal caregivers gradually get caught up in the increasing challenges of informal caregiving as their relative's dementia progresses.Informal caregivers felt that support systems were not adequately addressing their current needs and stage of the dementia process.Previous HCI work has foregrounded the need for care coordination systems to support informal caregivers CHI '24, May 11-16, 2024, Honolulu, HI, USA of people with chronic diseases to balance care responsibilities with their personal lives [12,59].Enriched by our findings, future HCI research can investigate how such care coordination systems can cater to the changing dynamics in care tasks as dementia progresses.Such systems should automatically monitor caregiving loads and adapt coordination of care tasks and personal life accordingly.As such, support services or applications for informal caregivers can create awareness of the evolving challenges of informal care to offer more grip on managing increasing care needs.
(ii) Decision Support Systems for Alignment: Our findings highlight how the incremental progression of dementia causes informal caregivers to doubt and remain uncertain regarding admission to formal residential care.These findings echo previous work indicating the need for decision aids to support informal caregivers in the transition process [44].The interviews revealed that underestimating the current situation is a reason care transitions often occur too late, when the informal caregiver is overburdened [46] or after a crisis that calls to action [4].Furthermore, informal caregivers had to negotiate complex trade-offs in transitions, as there remains ambiguity about the right time to act.Therefore, we propose using decision support systems to provide more clarity and control during moments of uncertainty in the care transition.Online services and applications offering a clear view of the transition process and objective data stimulate timely preparation and decision-making to avoid sudden moments of disruption [2].However, misalignments can hinder the decision-making process between professionals and informal caregivers, as was illustrated in the findings by the disagreement between the hospital and the family caregiver's decision.Therefore, we identify an opportunity for support systems to assist informal caregivers and healthcare providers in making informed decisions, increase transparency about the transition process, provide recommendations based on the individual's health status, and offer available care options considering the preferences of the person with dementia.
(iii) Soft Landing in Residential Care: Our findings indicate a fit between the formal care environment and the desires or needs of people with dementia is key to accepting care transitions.Furthermore, the informal caregivers expressed having specific preferences and expectations, yet the current waiting list system does not cater to these needs.Based on these insights, we identify an opportunity for technologies to support a soft landing in formal residential care.A strategy reported in literature is bringing familiar objects from home into the care home to provide continuity and comfort during the transition [42].Digital technologies provide flexible, scalable, and personalized solutions to offer a sense of familiarity and increase acceptance of the care home environment [66].For example, sharing and curating cherished digital collections can offer connections to the past to cope with evolving family situations [55].Furthermore, our findings indicate informal caregivers strive to maintain contact with their relatives with dementia after the transition, as caregiving does not stop after admission to formal care [48].Therefore, there is potential for technology to support these remote family relationships.For example, research suggests sharing and capturing photos enhances connections between family and residents in a dementia care home [34].In addition, technology can enable two-way communication channels [40,67] or connect asynchronously through connected tangible devices e.g., connected coffee mugs [19].
5.1.2Tailored and Accessible Information.Our findings illustrate informal caregivers need more information and clarity about the dementia condition and its progression, the care services available in the region, and the administrative tasks involved.To participants, it was unclear what information sources were available, where to find them, and how to apply them to their situation.Literature confirms that informal caregivers need clear information and communication channels regarding care transitions [27,74].Our findings align with HCI research highlighting the lack of credible and accessible online information for people living with dementia [20].
(iv) Situational Information to Manage Expectations: Our results report that informal caregivers needed more information on future steps in the care transition, which does not necessarily relate to their current situation, but offers perspective and allows for timely preparation.These findings imply that a 'just-in-case' strategy for information finding provides more comfort than 'justin-time' strategies to support smooth care transitions [50].Future HCI research can explore how websites, mobile apps, or chatbots provide individuals with dementia and their caregivers with accessible and reliable information, incorporating expectations and informing on possible future needs to support a timely preparation for the next steps.This information can include overviews of local support groups, available care options, legal and financial advice, and educational materials about dementia.
(v) Personalized Information Resources: Our findings reveal that participants actively searched online for information, yet the abundance of information online is often overwhelming, inaccessible, and difficult to interpret.Therefore, online services or applications should offer clear information channels fitted to the specific situations and needs of informal caregivers and the person with dementia.Personalization and customization are crucial in addressing these unique needs in complex care contexts [60].Furthermore, our data shows that the information needs of a spousal caregiver may differ significantly from the needs of adult-child caregivers.Therefore, personalized information resources can tailor information delivery based on the stage of dementia, individual preferences, and specific concerns, ensuring that the information is relevant and understandable.In addition, emergent conversational technologies, such as chatbots or other interactive agents, can support personalized information finding and delivery [75] and support informal caregivers to formulate specific queries related to their current situation and needs.However, such systems must provide credibility, compassion, and a sense of control regarding information shared [18].More research is needed into how informal caregivers and people with dementia are willing to exchange personal and health-related information with such systems [54].
(vi) Support from Experienced Peers: Informal caregivers expressed the need for learning from the experiences of other informal caregivers and preferred receiving information in person.Connecting informal caregivers is an effective strategy for coping and putting the difficulties of caregiving in perspective [43].In previous work, informal caregivers expressed the need to learn from people in similar situations [51].Based on our findings, we suggest that such services and systems provide novel opportunities to connect informal caregivers new to the role with peers who have more experience in the dementia care process.More experienced peers can provide emotional support and share relevant information on best practices in care transitions.For example, social media platforms or online spaces can be cultivated to facilitate such exchanges [37].

Bridging Care Practice and HCI
This paper presents the findings from a study executed in close collaboration between professionals from care practice and HCI researchers from academia.This practice-informed approach [15] rooted our methodology in real-life scenarios and challenges present in current care practice.The collaboration with care professionals steered the interviews and enriched the data gathered as this approach led to a large and diverse participant sample of informal caregivers providing meaningful and in-depth responses to their current experiences and reflections on caregiving for a relative with dementia.Each interview set contained different participants, each in a different phase reflecting on one point in the dementia journey but may not yet have experienced the transition into residential care.Future research addressing care transitions could enhance these findings by following informal caregivers through the entire care pathway of progressive or chronic diseases.
Our practice-based approach reveals concrete experiences of caregiving in dementia to inspire and motivate future HCI research in health-related settings to be grounded in existing care practices.We build on work in HCI that aims to go beyond designing and evaluating artifacts in care settings to identifying care processes and systems where technology can meaningfully contribute [73].For example, joint collaborations between academics and care practice can result in long-term impact of research outputs [32].As dementia is a continuum that covers many different phases, perspectives, and stakeholders over time [8], we see an important role for HCI in targeting and embracing these complexities.By adopting practice-based approaches, future HCI research can support reshaping policies, improving care systems, and elevating care standards and quality of life for people with dementia.

CONCLUSION
This paper reports on an interview study that investigated the experiences and reflections of 42 informal caregivers of people with dementia before, during and after a transition of their relative with dementia to formal residential care.We adopted a transdisciplinary practice-informed approach to steer the research question and methodology.This approach led to insights into how informal caregivers need to navigate hurdles of information finding, get caught up in the evolving challenges of informal caregiving, and shift from uncertainty in decision-making to acceptance of admission to formal care.Based on these findings, we propose six opportunities for technology to support decision-making and dynamics in dementia and to provide tailored and accessible information.We aim to motivate future HCI research to address transitions in care and collaborate with care practice to effectively influence care processes and the quality of life of those with dementia.

Figure 1 :
Figure 1: Based on the intermediate results and initial coding, the focus on waiting lists was expanded towards different moments of the transition from after the diagnosis to care at home, and eventually admission to formal residential care.
Now I know that you can get very far with humor.Our mom can't help it [having dementia].That change [using humor] also creates a nicer atmosphere." [P37D] In addition, participants seek information about leisure activities to do with the person with dementia: "I would like to know what else I can do with my mother.Kinds of dementia-proof activities." [P42D] 3. Progression Dementia.Participants wanted a more realistic picture early on of what to expect from the progression of dementia and how to recognize the different stages: "How does the disease develop?What's coming your way in the following years?Recognize the phases so you know how to deal with them." [P40D] Similarly, participants stressed the value of having the right information at the right time: "You are in such a bad situation that you do not have the ability to find information." [P34D]

Table 1 :
42informal caregivers were interviewed in four sets as the interview questions were adapted based on the initial coding of the previous set.

Table 2 :
The 42 informal caregivers consisted of 14 spouses, 26 adult-child caregivers, and two adult children-in-law.