"The Only Thing Certain About This is Uncertainty": Exploring Informal Care Coordination Practices Among Older Adults with Mild Cognitive Impairment

1 Introduction

• MCI can affect memory, executive function, and language, while support needs often concern cognitively demanding routines such as medication and financial management.Many people with MCI retain independence in basic activities of daily living, making this a potential period to support autonomy.Source: §1 · p. 2
• Less is known about how informal care for MCI is structured and how care partners and tools support everyday coordination.The study asks who coordinates, what activities need coordination, which tools are used, and where those tools fall short.Source: §1 · pp. 2–3

1.1 Contributions

• The study frames coordination across three dimensions: the activities coordinated, the tools used, and the people involved.It considers both analog and digital tools and the stakeholders in informal care networks.Source: §1.1 · p. 3
• The paper characterizes informal MCI care as orchestration by a primary care partner who arranges supports and mediates participation by the broader care network.This orchestration includes practical support and attention to the diagnosed person’s emotional needs, including autonomy and independence.Source: §1.1 · p. 3
• The authors offer lived-experience accounts and design insights for future socio-technical systems supporting collaborative care coordination at home.Their stated design aim is to support successful aging in place for older adults with MCI.Source: §1.1 · p. 3

2.1 Informal Care Coordination

• Care-coordination frameworks often center clinical tasks and formal-care systems, leaving everyday functioning, anticipation, and relational negotiation less accounted for.Informal caregiving research also describes cognitive and emotional labor, including the cared-for person’s daily and socio-emotional needs.Source: §2.1 · p. 4
• Although informal care involves distributed coordination through communication and tools, studies often treat caregiving generally and may miss MCI-specific needs and changing roles.The cited gap includes tools that reflect changing cognitive and functional abilities and care roles shaped by cultural expectations.Source: §2.1 · p. 4

2.2 Care Coordination for MCI

• MCI progression varies, requiring care to adapt as abilities change; primary care partners are often older spouses facing unfamiliar responsibilities and their own aging-related challenges.Some couples hesitate to seek outside help because they perceive MCI as less serious than dementia or other chronic illnesses.Source: §2.2 · pp. 4–5

2.3 Cognitive Decline and the Role of Technology

• Dementia technologies have addressed memory, sequencing, social connection, and coordination, but often focus on more advanced decline rather than MCI’s subtle progression.Research on MCI has examined separate facets or constrained interventions, leaving everyday coordination across people, tools, relationships, and routines less integrated.Source: §2.3 · pp. 5–6
• This study uses qualitative inquiry into people, activities, and tools to characterize MCI care coordination as relational, evolving, and orchestrated by a primary care partner.The authors frame MCI as a distinct design space for systems that scaffold autonomy, adapt to shifting capacities, and foster collaborative caregiving.Source: §2.3 · p. 6

3 Study Method

• The study used hour-long semi-structured interviews about daily supports, routines, coordination approaches, tools, and participants’ lived experiences.The qualitative approach was chosen to provide a broad overview and inform more targeted future inquiry.Source: §3 · p. 6

3.1 Participant Recruitment

• Participants came from a clinical program with a year-long curriculum, and the analyzed interviews represented 6 people with MCI and 10 care partners.Seven people with MCI and 11 care partners participated, but one transcript was unavailable; some care partners chose not to include the person with MCI in an interview.Source: §3.1 · p. 7

3.2 Qualitative Interviews

• Interview questions used “who, what, how” to examine involved people, supported activities, and analog or digital tools and their uses.Separate scripts accommodated interviews with both members of a dyad or with a care partner alone.Source: §3.2 · p. 7

3.3 Data Analysis

• The team developed three coding schemes for activities, tools, and people, with multiple coders reviewing schemes and resolving disagreements through group consensus.Activity coding included facilitators and barriers; tool coding tracked object and function; people coding distinguished individual, dyadic, and network involvement.Source: §3.3 · pp. 8–9
• Cross-cutting analysis mapped relationships among the codes and identified care partners’ orchestration of activities, tools, and network participation.The team used relational mapping to support discussion of how coordination happens day to day.Source: §3.3 · pp. 8–9

4 Results

• The analysis identifies three themes: care partners orchestrate activities, manage MCI’s transition and uncertainty, and expand and calibrate caregiving networks for future needs.The themes connect experiences across the people, activities, and tools of informal care coordination.Source: §4 · pp. 9–10

4.1 Theme 1: Informal CPs as Orchestrators of Care Activities

• Primary care partners centrally coordinate support for the person with MCI and mediate how the broader care network participates in daily activities.Orchestration may be direct, through planning and executing tasks, or indirect, through behind-the-scenes arrangements that account for autonomy and emotional needs.Source: §4.1 · p. 10

4.1.1 Direct and indirect orchestration of activities within the dyad.

• Care partners use direct arrangements and behind-the-scenes scaffolds, including technology and outside help, to support activities while preserving the person’s independence and engagement.Examples include paired appointments, reminders, remote check-ins, and coordinated living support; indirect orchestration also attends to emotional needs and quality of life.Source: §4.1.1 · pp. 10–12

4.1.2 Care partners as mediators between and across the broader care network.

• Care partners mediate communication and support across family and outside caregivers, bearing substantial work to keep information coordinated and choose tools suited to the network.Digital tools can span time and distance but require follow-up to keep information current; handwritten diaries could be easier for multiple outside caregivers to use, while tools generally track outside support.Source: §4.1.2 · p. 13

4.2 Theme 2: Managing the Transitional Nature of MCI and Uncertainty About Future Cognitive Decline

• MCI makes care coordination a moving target: care partners monitor changing cognitive and functional abilities and continually adjust supports, tools, and others’ involvement.Participants’ accounts reflected differing timepoints in the diagnosis and stage-by-stage similarities in the amount and type of support needed.Source: §4.2 · p. 14, §4.2.1 · p. 14

4.2.1 Learning how to coordinate for MCI at each progressive stage of care.

• Coordination needs shift across MCI stages, from early self-support to greater care-partner involvement, and effective supports must fit the person’s current abilities and preferences.The accounts describe reduced awareness and capacity in middle stages and extensive support needs in later stages; progression varies, making longitudinal adaptation important.Source: §4.2.1 · pp. 14–15

4.2.2 Navigating uncertainty about future care needs.

• Care partners face uncertainty about future living arrangements, caregiving roles, and technology, and struggle to turn anticipated needs into solutions suited to their daily lives.They may recognize the value of future supports yet lack confidence about decisions and find available technologies too boilerplate for their lifestyles, preferences, and needs.Source: §4.2.2 · pp. 15–16
• Technology that failed to fit current needs was seen as insufficient for daily activities, making its future usefulness feel potentially futile and emotionally weighty for care partners.These concerns were shared across all dyads.Source: §4.2.2 · pp. 16–17

4.3 Theme 3: Expanding and Calibrating the Caregiving Network in Anticipation of Future Care Needs

• Care partners considered expanding support networks for future physical and daily-care needs, drawing on their own preferences and capacities to guide decisions.Some considered live-in or hired help as needs increased, while others looked to existing social contacts or gig workers.Source: §4.3 · p. 17
• Hired help could provide social enrichment for people with MCI while giving care partners respite from coordination responsibilities.Examples included a cleaner staying with a person while the care partner was away and paid help enabling outings with friends.Source: §4.3 · p. 17
• Care partners had to balance anticipated support needs with the person with MCI’s discomfort about others’ involvement, prompting efforts to ease them into outside help.Ad hoc, context-aware social engagement could offer a way to broaden support while considering the person’s comfort and preferences.Source: §4.3 · pp. 17–18
• Every dyad expressed uncertainty about future support, with limited family help, resources, finances, or trust making network expansion confusing and difficult.The authors conclude there is no single correct approach; suitable options depend on each dyad’s needs and context.Source: §4.3 · p. 18

5 Discussion

• Care partners’ coordination spans daily activities, social engagement, entertainment, healthcare, and socio-emotional needs, while they also support their own wellbeing.The work corroborates prior findings about the growing responsibilities and mental, emotional, and physical challenges faced by care partners.Source: §5 · pp. 18–19
• Orchestration describes care partners’ direct and indirect arrangements of support and their mediation of the wider care network.It includes identifying needed supports, how they are delivered, and the roles others will play, with emotional awareness of autonomy and quality-of-life needs.Source: §5 · p. 19
• These orchestration activities provide practical and socio-emotional benefits that help people with MCI continue supporting themselves when care partners deem it feasible.The authors argue that this context warrants consideration of technologies addressing informal-care orchestration needs.Source: §5 · p. 19

5.1 Coordination as Orchestration Across the Care Networks

• Orchestration is a primary care partner’s effortful role of arranging supports within the dyad and across the network, including emotionally attuned scaffolding that can preserve participation and autonomy.Care partners may involve a person with MCI in a task for cognitive stimulation even when their help is not necessary to complete it.Source: §5.1 · p. 19

5.1.1 Informal orchestration as a gateway to formal support.

• Care partners act as gateways to formal support, negotiating how it is introduced and balancing family members’ expectations, preferences, and capacity to help.Support may need to feel familiar and non-threatening to the person with MCI, while some relatives need substantial scaffolding to participate.Source: §5.1.1 · p. 20, §5.1.2 · p. 20

5.1.2 Balancing day-to-day needs with involvement from outside the dyad.

• Care partners plan thoughtfully for day-to-day support regardless of MCI severity, while distributed caregiving can bring mismatched expectations and coordination tensions even before dementia.The authors suggest systems make expectations visible, allow roles to be reassigned flexibly, and reduce hidden mediation work.Source: §5.1.2 · pp. 20–21
• MCI can shift responsibilities to care partners, who must find ways to keep the person involved; the authors also identify gendered coordination dynamics that warrant further study.Examples include supporting communication with speech-to-text and adult children taking on coordination when a wife’s MCI disrupts household routines she had managed.Source: §5.1.3 · p. 21

5.1.3 Establishing a “new normal” that maximizes the dyad’s autonomy and wellbeing.

• As abilities and support needs change, care partners adapt coordination while managing grief, fatigue, and uncertainty that can constrain their capacity to experiment, involve others, or revise routines.The authors call for support that eases both the logistical and emotional burden of longitudinal care.Source: §5.1.3 · pp. 21–22

5.2 Design Opportunities for Future Technology for Orchestrating Informal Care

• Available technologies often fail to support the evolving orchestration work of MCI dyads, leaving care partners to plan, repurpose tools, or perform extra emotional labor.Every interviewed dyad described gaps between their coordination practices and the digital or analog tools they relied on.Source: §5.2 · p. 22

5.2.1 Adapting non-specific technology mediums to support specific coordination needs.

• Generic tools only partly support fragile routines dependent on timing, presence, or reassurance, so care partners anticipate failure and scaffold workarounds.The authors propose contextual input about what support is needed and when, alongside a platform integrating multiple functions.Source: §5.2.1 · pp. 22–23

5.2.2 Designing for Trust and Progressive Adoption of Support for the “New Normal”.

• Distrust, unfamiliarity, and complexity can limit technology use, motivating familiar, easy-to-use supports that can be adopted early and remain usable as needs evolve.Suggested directions include progressive disclosure, redundant multimodal prompts, and configurable sharing with family or formal providers.Source: §5.2.2 · p. 23

5.2.3 From Manual Workarounds to Hybrid Care Coordination Tools.

• Participants often found analog methods more efficient and trustworthy when digital tools created confusion or extra effort, and they moved between modalities according to task and context.Paper calendars and whiteboards could anchor routines while digital tools added reminders, remote access, or backup tracking; fully automated systems could add oversight and troubleshooting burden.Source: §5.2.3 · pp. 23–24
• Systems should accommodate transitions in cognitive ability by allowing agency to shift gradually from the person with MCI to the care partner without abrupt tool replacement.A system may foreground familiar participation initially, then serve as background infrastructure for care-partner-led monitoring or coordination.Source: §5.2.3 · p. 24
• The authors recommend hybrid designs that integrate with rather than replace analog scaffolds, such as digitizing handwritten notes or syncing wall calendars with shared reminders.These designs are intended to preserve familiarity and autonomy while reducing care partners’ redundant coordination work.Source: §5.2.3 · pp. 24–25

6 Limitations

• The study could not always capture people with MCI’s perspectives directly, as some care partners spoke for them and some participants offered little commentary.The authors suggest mixed methods or in-the-moment ethnographic approaches to give people with MCI greater opportunity to contribute.Source: §6 · p. 25
• The study’s findings come from dyads with a primary care partner who was a spouse, adult child, or other family member, so they may not generalize to people with MCI living alone or lacking regular dedicated support.The authors identify more fragmented and decentralized care networks as a future research direction.Source: §6 · p. 25
• The analysis presents high-level themes but does not quantify how care partners successfully or unsuccessfully use technology for emotionally aware coordination.The authors call for further exploration of these practices.Source: §6 · p. 25

• Informal MCI caregiving seeks to maximize independence and quality of life through daily supports and emotionally attuned care.Source: §7 · p. 25
• Interview data unpack current informal coordination practices and offer insights for technology supporting care partners as they orchestrate daily supports.Source: §7 · p. 25
• The study lays groundwork for future exploration of informal MCI care coordination and human-centric support systems for informal care networks.Source: §7 · p. 25