Navigating Support Together: A Meaning-Oriented Dyadic Understanding of Daily Life With Young-Onset Dementia

Abstract

Young-onset dementia occurs during life stages when work and family responsibilities may still be present. These circumstances mean that persons with young-onset dementia often face support systems that are not fully adapted to their age, needs, or daily life. Although family-centred approaches are increasingly recognised in dementia care, limited knowledge exists about how couples living with young-onset dementia understand and make use of support in daily life. This study explores how support is experienced and integrated into the shared lifeworld of couples, focusing on practical, emotional, and existential aspects of daily living. Eleven couples participated in dyadic, semi-structured interviews. A meaning-oriented thematic analysis, guided by lifeworld research, was used to explore how support is understood and incorporated into daily life. Three themes emerged. Negotiating independence and support in daily life describes how couples balance emerging needs with daily routines and autonomy. Navigating complex systems in search of adequate support highlights the challenges of encountering fragmented structures and unclear responsibilities, often requiring persistence to identify relevant services. Experiencing a balance between expectations and daily support shows how support becomes meaningful when it aligns with the couple’s daily life and current needs. Overall, the themes demonstrate how couples work together to maintain daily life while managing emerging needs and navigating fragmented systems, and how support is most helpful when it fits their life situation. The findings underscore the importance of support that matches the life circumstances of couples living with young-onset dementia and the ways they make sense of their daily lives.

Introduction

Young-onset dementia, defined by symptom onset before age 65 (Veen et al., 2022), affects persons in midlife, many of whom combine employment, family life, and responsibilities towards ageing parents (Cui et al., 2024; Gelman & Rhames, 2020). These overlapping responsibilities can make the diagnosis particularly disruptive, as it occurs during a period of life often characterised by multiple roles and ongoing commitments. Experiencing dementia in midlife also challenges prevailing social expectations of when illness or dependency is expected to occur. From a life-course perspective, it represents an off-time event that disrupts anticipated trajectories of work, family and ageing (Elder, 1994; Neugarten, 1970).

A diagnosis of dementia at a younger age often brings profound emotional and practical strain for both persons with young-onset dementia and their families. Partners may juggle employment, caregiving, and household duties while experiencing anxiety, grief and loneliness (Cabote et al., 2015; Håkansson et al., 2024; Kokorelias et al., 2024). Persons with young-onset dementia describe losses of identity and autonomy, as dependence increases (Bannon, Grunberg, et al., 2021; Spreadbury & Kipps, 2019). Such experiences are further complicated by support systems that are often not coordinated or adapted to the needs and life situation of younger persons (Cations et al., 2017).

Previous research has shown that persons with young-onset dementia often face fragmented support services, insufficient follow-up, and limited opportunities for meaningful activities (Carter et al., 2018; Cations et al., 2017). Because dementia is commonly assumed to be a condition of old age, community services often follow a model designed for older users, which means they are rarely tailored to the circumstances of younger persons and are therefore underused (Cations et al., 2017; Cations et al., 2021; Spreadbury & Kipps, 2019). While most diagnoses of young-onset dementia in Sweden occur in specialist services (Kårelind et al., 2024), it remains unclear how couples navigate available support. A recent review highlighted the importance of age-appropriate services and targeted policy actions (Zhang et al., 2025) (Zhang et al., 2025) emphasising that current support systems still fall short of meeting the everyday needs of persons with young-onset dementia.

For couples living with young-onset dementia, the structural gaps of support become evident in daily life, as they navigate services and activities that are seldom meaningful for their age group. Studies have shown that opportunities for participation are often limited due to age, interests, or physical activity level (Carter et al., 2018). This illustrates a gap between everyday realities and the ideals of care for persons with dementia. According to Swedish national guidelines, support should be person-centred and individually tailored, regardless of age (Socialstyrelsen, 2017). Person-centred care emphasises the importance of recognising each person’s unique preferences, needs, and identity (Kitwood, 1997). International frameworks, such as the WHO Global Action Plan on the Public Health Response to Dementia (2017), make the same call for equitable, person-centred access.

Most research on young-onset dementia has focused on formal support services or on individual reactions to the diagnosis, often described in terms of problems or a burden. Despite repeated calls for family-centred approaches (Hutchinson et al., 2020; Yang & Song, 2025), few studies explore the relational perspective of living with young-onset dementia. There is growing recognition that dementia reshapes couples’ shared lives and relationships, including when it occurs at a younger age (Bannon et al., 2022; Bielsten & Hellström, 2019; Larochette et al., 2020; Popok et al., 2022). However, little is known about how couples make sense and respond to support together. To address this gap, this study examines how couples living with young-onset dementia experience support in the everyday context. Rather than reviewing existing support services, we explore how support is interpreted and made meaningful within the couple’s shared world.

This study adopts a meaning-oriented approach (Lindberg et al., 2024) grounded in lifeworld research, which originates from phenomenological philosophy. The lifeworld perspective emphasises how lived experiences and meanings develop in everyday life, highlighting openness to participants’ views and the importance of context (Dahlberg & Dahlberg, 2019). In dementia research, lifeworld perspectives have been used to illuminate how persons with dementia perceive their daily experiences and relationships (Eriksen et al., 2022). Such an approach helps uncover experiential and relational aspects that are often overlooked in more problem- or symptom-focused research. This perspective underpins the meaning-oriented thematic analysis employed in the present study, which aims to understand how couples experience and make sense of support within their shared, real-life experiences.

Method

Design

The chosen qualitative exploratory design employed dyadic, semi-structured interviews to best capture the couple’s experiences of support in daily life.

Definitions

Support is defined broadly in this study. It encompasses healthcare related to diagnosis and follow-up, as well as formal services such as daycare programmes and structured interventions. And informal support from the partner, family and friends, including emotional and practical aspects of daily life.

Recruitment and Participants

Inclusion criteria required one partner to be diagnosed with young-onset dementia before age 65, at least six months prior. Couples could not be receiving ongoing Swedish LSS support (the Swedish Act Concerning Support and Service for Persons with Certain Functional Impairments) at diagnosis to ensure comparable starting points, as it can affect early access to support and create differences unrelated to dementia. Couples also had to be living together.

Eleven couples were recruited for the study through memory clinics (n = 9) and an advertisement on the Swedish Dementia Association’s website (n = 2). Ages ranged from 54 to 68 for persons with young-onset dementia and 54 to 65 for partners. Seven with young-onset dementia were men, four women; seven partners were women, four men. The sample included persons with diverse educational backgrounds, from basic to higher education. Some were working, others were on sick leave, and some with young-onset dementia had retired. Relationship durations ranged from 10 to 43 years. Couples lived in urban or rural areas across three Swedish regions. Dementia diagnoses included Alzheimer’s disease (n = 8), frontotemporal dementia (n = 1), Lewy body dementia (n = 1), and unspecified dementia (n = 1). Time since diagnosis ranged from 6 months to 4 years.

Data Collection

Data were collected between April 2022 and October 2023 through dyadic semi-structured interviews. Each couple participated once. An open-ended guide (Appendix 1) was used to explore daily life and support after diagnosis. Interviews began with, “Can you describe your daily life?” and later addressed support, for example, “What kind of support do you currently receive?” Interviews lasted 33-102 minutes (median 63), were audio-recorded and transcribed verbatim, with unrelated segments omitted. One participant did not speak either Swedish or English, so a professional interpreter was used. Another participant preferred to answer in English, despite being asked (and understanding) the questions in Swedish.

Because the interviews included persons with dementia, the interviewer used flexible, supportive communication strategies when needed. These strategies included allowing extra time for responses, repeating or rephrasing questions when necessary, and adapting the pace and complexity of questions to the participant’s communicative abilities. The dyadic format supported interaction when communication was affected, as partners may help with clarification and shared recollections (Morgan et al., 2013; Szulc & King, 2022).

Data Analysis

The analysis was guided by a meaning-oriented perspective grounded in lifeworld research, which emphasises lived experience and a reflective approach. Rather than a fixed method, meaning-oriented thematic analysis provides a philosophical and methodological framework based on lifeworld theory (Lindberg et al., 2024).

The lifeworld refers to the world as subjectively encountered and given meaning in daily life, covering both practical and existential concerns (Dahlberg & Dahlberg, 2019). In this study, the phenomenon investigated was defined as the support experienced by couples where one person had young-onset dementia, with a focus on how it is integrated into practical and emotional aspects of daily life.

The analysis focused on identifying clusters and themes of meaning, situating the process within an understanding of the lifeworld and lived meaning of support. Analysis began with repeated readings for immersion. Meaning units were clustered into preliminary patterns of meaning, then developed into themes through a reflective movement between whole and parts, while remaining open to alternative interpretations. Themes were refined in relation to the phenomenon and research aims. The aim was to show not only what couples described but also how they gave meaning to support. The analysis was carried out collaboratively by the authors, involving multiple discussions to refine interpretations, ensure consistent understanding, and prevent premature conclusions.

The analysis was conducted in Swedish. For publication, participant responses were translated into English by the first author and reviewed jointly with English-speaking co-authors to ensure clarity and consistency. No back-translation was undertaken, but translations were discussed to maintain meaning and prevent mistranslation of culturally specific expressions.

The process of developing a theme, beginning with meaning units and progressing through clusters, is illustrated in Figure 1–3.

Figure 1.

Example of moving from meaning units through clusters to the theme “Navigating complex systems in search of adequate support.”

Figure 2.

Example of moving from meaning units through clusters to the theme “Negotiating independence and support in daily life.”

Figure 3.

Example of moving from meaning units through clusters to the theme “Experiencing a balance between expectations and daily support”

Preunderstanding and Reflexivity

The first author, a registered nurse with experience in home healthcare and dementia care, conducted all interviews and was primarily responsible for data analysis. The research team combined expertise in gerontology, psychology, and nursing with extensive work in dementia care, qualitative interviews with persons with dementia and their partners, and studies on ageing and care trajectories. Different professional perspectives fostered a reflective approach to the material and helped maintain an openness to how experiences were expressed and understood throughout the research.

Results

The findings reveal how couples experience support in their daily lives. Three interconnected themes emerged: negotiating independence and support in daily life, navigating complex systems in the search for adequate support, and experiencing a balance between expectations and daily support. These experiences reflect emotional responses to both formal and informal support, as well as ongoing efforts to manage daily life.

Negotiating Independence and Support in Daily Life’

Young-onset dementia deeply affected couples by forcing adjustments in routines and relationship dynamics. Couples balanced independence and support, shaping tasks and social interactions. Support was key to their sense of autonomy and stability.

Persons with young-onset dementia described relying on partners for daily tasks, reflecting shifts in roles within the couple’s relationship. While they wished to remain active and independent, they saw their partners increasingly taking on the planning and organisation. This shift was not only practical but also created emotional friction, showing how support could become a source of tension.

Partner: You don't dare take on a project or responsibility like you have done before. […] I’ve had to take on more of the contacts and planning — things you used to do […]I have to remember a lot more. Did you do it? Did you buy it? It's something that's a bit annoying for both you and me.

(Couple 3)

Changing dynamics shaped both task division and the emotional atmosphere. Some persons with young-onset dementia worried about partners feeling overwhelmed, while still wanting to contribute meaningfully:

Person with dementia: Sometimes, maybe you take on too much responsibility […] I do have things under control, but we don’t know what tomorrow will bring. It might be good that you get more involved in different things, but I don’t want you to be burdened so heavily. Then we have to start considering other living arrangements…

(Couple 3)

In other cases, persons with young-onset dementia felt their partners underestimated what they could still manage. Well-intentioned support could feel overwhelming or restrictive of autonomy:

Person with dementia: “I still believe I can manage a little more than she says. She has set the limit. [...] I’ve been granted mobility services (special transport for persons with functional impairments). [...] But she wants to drive me to the gym, the doctor, and things like that”

(Couple 1)

Work was another major adjustment. Some partners left their jobs to become full-time caregivers, while others adjusted their schedules to be more present at home. Communication was not only coordinating but also coping with constant worry, making it difficult to disconnect or concentrate:

Partner: “ I had gone to work… and you sent several messages and called, and that day I didn’t look at my phone. I got really worried that you thought I was coming home for coffee or lunch, wondering where I was. I started thinking, maybe I should quit my job. But now I make sure to check my phone during lunch, at least. That situation really shook me. I need to be able to reach him, or he me, if something like that happens again.”

(Couple 3)

Couples described how the condition also affected their major life choices. Access to adequate support services sometimes led couples to relocate — or cancel a planned move — influencing not only their support situation, but also their autonomy in deciding where to live:

Partner: “There were several reasons (to move) — one was the proximity to regional healthcare, but also because we felt there was such a big difference in the quality of municipal support. In (former municipality), they hadn’t even hired a dementia nurse, and we had no contact. Here in (new municipality), we were met by two people from the municipality before we had even moved in.”

(Couple 5)

In the broader context of balancing support and independence, support from family, friends, and neighbours shaped couples’ daily lives. While support could ease practical challenges, it also created new relational dynamics. In some cases, involving family members raised doubts about boundaries and expectations:

Partner: “Adult children have their lives. But in this situation, we need them. […] I feel that they probably need to be more involved and understand more. And, where’s the limit for how much they should get involved?”

(Couple 3)

Emotional support from friends helped couples feel less isolated and made daily life easier to manage. Small, regular acts — like a weekly phone call — fostered a sense of connection and exchange that mattered deeply in their daily lives:

Person with dementia: “I have a pretty good social network, and it means a lot. I’m friends with a widower, and he calls every week. At first, I thought it was mostly for him, but now I realise I need it just as much. We talk every week, and it gives something back — when it’s good for someone else, it becomes a good experience for me too.”

(Couple 3)

At the same time, some couples discovered that their social networks struggled to understand the realities of the condition. Instead of providing support, these interactions could leave them feeling misunderstood or isolated:

Partner: “Some friends don’t Understand Anything.”

Person with dementia: “You struggle with something, and then suddenly it works. People don’t get that. Either you can or you can’t — but that’s not how it works. People really don’t understand the shifts in this. I think some just don’t want to. Their lives are going fine, so they don’t want to deal with it.”

(Couple 11)

These reflections illustrate how couples continually adapted to shifting needs and responsibilities while striving to maintain independence, normalcy, and a sense of mutual connection. Support was not just something they received; it was actively negotiated together, both practically and emotionally.

Navigating Complex Systems in Search of Adequate Support

Receiving a dementia diagnosis did not immediately result in coordinated support. Instead, couples reported the period following the diagnosis as characterised by confusion, uncertainty, and limited access to services tailored to their age and life situation. Without clear pathways or financial support, they were left to navigate a fragmented and often unresponsive system on their own.

Couples described uncertainty about the types of formal support available and when or how they could access it. They also described the lack of clear guidelines or a designated contact person to whom to turn when questions arose. There was a shared perception that the system expected them to know what to ask for and when, despite their limited experience with young-onset dementia:

Partner: “She (the physician) just looked at me and said, Well, we are a diagnostic service, so we usually refer people back to primary care. And I said to her, 'You can’t mean that? Is primary care supposed to handle this? Really?!' [...] They told us, 'Come back in six months.' That’s it.”

(Couple 10)

The uncertainty about the support that would follow the diagnosis was reflected in couples’ real experiences when the need for support eventually arose. Couples described being promised coordinated support but ultimately having to manage independently during a critical period:

Partner: “They promised us everything when he was discharged from the hospital—that the municipality would call, that someone would help. But no one ever contacted us. We had to handle everything ourselves during the worst time [...] No one has explained to us what to do — how to handle someone who is sick like this [...] No one told us. We had to figure everything out ourselves.”

(Couple 8)

Some couples reflected on broader structural challenges. The absence of a shared national framework and differences across local systems were highlighted as barriers to consistency and clarity. One partner expressed frustration that each professional appeared to start from scratch, without shared tools or guidelines:

Partner: It shouldn’t be the case that every new patient, every new doctor, every new nurse has to reinvent the wheel each time. There has to be some kind of structure; there have to be guidelines. There has to be something that makes this work.

(Couple 5)

Alongside difficulties in navigating the system, couples described a lack of meaningful and age-appropriate activities for persons with young-onset dementia. Existing activity initiatives were often seen as unhelpful or alienating because they primarily catered to the needs and lifestyles of older adults. Some activities seemed so unrelated to couples’ previous interests that they worsened the feeling of not belonging. One participant, reflecting on a day program, explained:

Person with dementia: “And the worst thing was, when we were supposed to exercise, we did chair gymnastics. And sure, that might be fun, but for me? I’ve played sports all my life — it felt like an insult. [...] I sat there and saw all the old people, and I thought: What am I doing here?”

(Couple 7)

Beyond feeling mismatched with their interests, couples discovered that visiting day care programmes also brought them face-to-face with the visible progression of the illness in others, prompting complex reflections on their own future and the emotional burden of witnessing advanced decline:

Person with dementia: When you see someone who can’t chew or anything… it was awful. I started thinking, how will I become?

(Couple 7)

It was not just the content of the activities but also more profound questions about what makes support socially meaningful. There was discomfort with the idea that sharing a diagnosis should be enough to foster connections with others:

Person with dementia: “I think the people you spend time with are usually those who enjoy the same things you do […] To me, it feels a bit strange to spend time with people just because we have the same disease. […] It’s not an interest, it’s a diagnosis. […] What are we supposed to sit and talk about—our problems? […] It’s not the same as meeting a friend.”

(Couple 11)

These reflections demonstrate how activities that do not align with couples’ identities or interests can create a sense of exclusion rather than support. For some, they also heightened feelings of vulnerability and raised questions about the future.

In addition to challenges related to tailored support services, couples faced practical concerns about financial support and the economic impact of caregiving. They reported difficulties in accessing financial aid when caregiving responsibilities interfered with their ability to work:

Partner: “Economically, if you have to reduce work hours as a family caregiver, there’s no support at all. I’ve called around — it just doesn’t exist. And that’s pretty bad, because it can get really heavy [...] Should you have to work full-time to make ends meet, even though you’re basically on your knees?”

(Couple 11)

Alongside handling immediate financial difficulties, some couples also worried about how ongoing caregiving responsibilities might impact their future finances. These worries were often based on their current experience of balancing work and caregiving, as well as the lack of formal support available to ease that pressure. There was also uncertainty about what could happen if support needs increased further:

Partner: “My most important question when I think about the future — either far ahead or maybe not that far — is what financial support exists, for example, for families who decide not to place their loved one in a care home? So, I stop working and become a full-time carer. Can I even do that? Maybe I can’t. Or can I?”

(Couple 10)

Couples’ reflections reveal that questions about financial security and future caregiving are not merely abstract concerns but are integral to how couples perceive the potential support available—and what life might look like—as the condition progresses.

In conclusion, the narratives demonstrate how couples facing young-onset dementia often fall through the cracks of a system mainly designed for older adults, missing out on support that is not only tailored to their needs but also reliably available. This is true for both the person with young-onset dementia and their partner, where coordinated, practical, and emotional support can be vital in maintaining daily life.

Experiencing a Balance Between Expectations and Daily Support

While couples acknowledged challenges in navigating support systems, they also felt a sense of balance when support matched their daily lives and felt suitable for their current situation. Experiences were not always described in lengthy or detailed ways, but they reflected quiet confidence in the support available. It was not the amount of support that mattered most, but whether it aligned with their stage in the condition and their sense of independence. Feeling seen, heard, and supported without pressure fosters emotional security and a sense of ease in daily life. In these cases, support was less about adding more services and more about fostering stability and trust in daily routines.

Couples reported contentment with the support they currently receive. Instead of requesting additional help, they emphasised the importance of support that feels suitable for their current circumstances, neither excessive nor insufficient. The key was to ensure their daily needs were fulfilled, and that support matched their actual circumstances and requirements.

For some, life felt stable and manageable, to the point where the idea of receiving further support seemed unnecessary or even abstract. They had not actively looked for help and, when asked, found it challenging to determine what kind of support could be relevant to them at this point:

Partner: No, as things are now, it’s okay

Person with dementia: “I don’t think we need it yet.[…] I don’t know what kind of support that would even be”

(Couple 8)

The quality of interactions within support contexts could sometimes be even more important to couples than the practical support itself. Beyond simply describing support as effective or respectful, couples highlighted experiences of genuine warmth, collaboration, and affirmation. Being treated as part of a shared effort, where success and well-being are mutually encouraged, fostered a strong sense of belonging:

Person with dementia: “They are... it feels like a family. It’s not like someone comes in acting important about this and that — about who is the doctor and who is the nurse. They all work in the same way. You sit with one person for a while, then with another, doing different things together. All the time, they encourage you to succeed, to find solutions, to see what went right.”

(Couple 2)

Reassurance sometimes did not come from direct action but from quiet confidence that support would be available if needed. This sense of anticipated help—knowing that support would be accessed if conditions changed—provided stability and peace of mind without being intrusive. It was not about constant monitoring or frequent contact but about feeling assured that support would be accessible if the situation shifted:

Partner: “It’s not like we’re in a support group or anything. However, if needed, it would be available. We know that. You feel safe with them — that they would, you know… be there if needed. The greatest support is probably that things can just stay the way they are.”

(Couple 4)

These reflections demonstrate that support was meaningful when it aligned with couples’ practical needs and emotional realities. When expectations matched reality, support fostered stability, trust, and a sense of space for daily life. Recognition of shifting needs helped maintain this balance.

Discussion

This study examined how couples living with young-onset dementia experience support in daily life. A meaning-oriented thematic analysis identified three themes: Negotiating independence and support in daily life, Navigating complex systems in the search for adequate support, and Experiencing a balance between expectations and daily support. Findings suggest that support is shaped within relationships and grounded in the couple’s shared lifeworld.

The findings indicate that support in couples living with young-onset dementia is not fixed but continually negotiated within the couple. This corresponds with earlier work that describes how partners gradually assume increasing or altered responsibilities within the relationship (Bannon et al., 2022; Sanders & PowerRoles, 2009). Other studies have emphasised emotional interdependence and mutual adjustment as central features of couple relationships in dementia (Bielsten et al., 2018; Wawrziczny et al., 2016). Findings from this study show that such adjustments were integrated into daily routines and emotions, demonstrating the close connection between practical and emotional aspects of support. Similar to Bannon, Grunberg, et al. (2021), the couples in this study navigated psychosocial demands by adjusting their responsibilities and sharing them, which resonates with the concept of couplehood described by Hellström et al. (2007), and views dementia as lived jointly and continually negotiated within the relationship.

Support was experienced as helpful when enabling activity and participation, but felt intrusive if offered too early or in forms that did not match current needs. Comparable observations have been made by Cations et al. (2017), who found that persons with young-onset dementia and their families sometimes declined or withdrew from services that felt premature or irrelevant. Popok et al. (2022) likewise describe that persons with young-onset dementia can feel resentment when their independence is restricted, while partners may experience strain as responsibilities become unevenly distributed. Together, these insights suggest that forming support that considers both partners’ perspectives may be a complex process; yet, understanding how couples navigate this balance can inform the development of support that feels relevant and attuned to their lives.

The couple’s experiences also need to be understood within a broader support system. In this study, young-onset dementia affected fundamental life choices, including work and housing. Partners sometimes reduced hours or left employment entirely to remain available, taking on both daily responsibilities and the emotional weight of the situation. These decisions reflect dementia’s influence on routines and long-term planning, a pattern also noted in earlier studies (Cui et al., 2024; Gelman & Rhames, 2020). Housing decisions were sometimes influenced by the availability and perceived reliability of support, showing how fragmented systems can affect couples’ sense of security. A recent literature review (Giebel et al., 2025) identified substantial differences in health and social care for persons with dementia between urban and rural areas. Our findings suggest that such inequalities may also affect couples living with young-onset dementia, warranting further investigation.

Efforts to secure adequate support unfolded within a fragmented and unresponsive system, where couples were often left to piece together information and responsibilities across different services. This challenge mirrors international observations of gaps in continuity, particularly regarding the division of responsibilities among memory clinics, primary care, and municipal support (Kilty et al., 2019; Cations et al., 2017). Limited collaborations between institutions have similarly been shown to place additional strain on families who must navigate support structures without clear guidance (Cui et al., 2024). Zhang et al., 2025 Even though most persons with young-onset dementia in Sweden are diagnosed within specialised dementia healthcare settings (Kårelind et al., 2024; Kårelind et al., 2025), the couples described limited follow-up, unclear contact points, and few age-appropriate services. This echoes earlier findings showing that receiving a diagnosis within memory clinics (Kårelind et al., 2025) does not necessarily lead to earlier access to support services, suggesting that specialist involvement alone may not be sufficient to ensure continuity or relevance in post-diagnostic support.

The concerns about the lack of age-appropriate options were also reflected in how couples experienced group-based support services. When post-diagnostic group activities mainly catered to older persons or to those further along in the condition, the settings often felt mismatched with the circumstances of younger couples. Encounters with older participants or those experiencing more advanced symptoms made it difficult to identify with the group, reinforcing a sense of not quite belonging. These experiences highlight the importance of support that is not only diagnosis-specific but also sensitive to life stage, creating environments where couples can feel recognised and where the relevance of support fosters their sense of belonging.

Viewed more broadly, this study highlights a broader tension between the everyday lifeworld of couples and the system structures surrounding young-onset dementia support. Drawing on Habermas’s distinction between lifeworld and system (Habermas, 1987), it becomes evident that couples navigated dementia as part of their daily routines and relationships, while simultaneously encountering support shaped by bureaucratic procedures and organisational boundaries. Such misalignments can leave couples feeling unsure of how to proceed or less able to influence their situation. A lifeworld-centred approach would instead emphasise relational continuity and support grounded in everyday meaning, rather than relying on rigid structures.

Across the couple’s accounts, it became clear that support was shaped within the relationship and interpreted through shared meaning. Understanding support in this way calls for a dyadic perspective that considers couples’ experiences and interdependence (Håkansson et al., 2024; Hutchinson et al., 2020). Similar patterns have been noted in early-stage Alzheimer’s, where the perceived responsiveness of support influences how couples experience care (Huo et al., 2024). These insights resonate with earlier conceptualisations of caregiving as a dyadic, interdependent process (Lyons et al., 2002; Lyons & Lee, 2018), reinforcing this perspective. The Theory of Dyadic Illness Management (Lyons & Lee, 2018) further highlights how couples jointly appraise the illness and engage in shared management behaviours, positioning support as something developed within their ongoing relationship. Taken together with our findings, this suggests that practice should ensure both partners have space to express their perceptions, recognising that support can either strengthen or unsettle the couple’s balance.

Professionals’ engagement played an important role in how couples experienced support in daily life. What mattered was not the amount of support but whether interactions felt attentive, warm, and respectful. This aligns with research showing that the quality of interaction can be as meaningful as practical support (Quinn et al., 2022). In this study, a sincere and collaborative atmosphere fostered trust and emotional security, reinforcing that “good support” is not solely defined by services provided but by whether couples feel recognised—both as individuals and as a unit. This resonates with accounts of positive post-diagnostic support emphasising how services are delivered, where supportive practices are described in terms of maintaining autonomy, selfhood and togetherness (Stamou et al., 2024) These findings can be understood through perspectives that view experiences of support as shaped within relational processes (Lyons et al., 2002; Lyons & Lee, 2018). Such experiences also reflect the principles of both person-centred care and family-centred care. Although these approaches differ in how they conceptualise the family’s role, both emphasise involvement in care planning and recognition of relationships as central to well-being. In family-centred care, family members are explicitly viewed as partners in care (Feinberg, 2014), a perspective particularly relevant for couples whose daily lives remain closely intertwined.

The findings in this study suggest that professional encounters are generally warm and respectful, indicating that interactional tone is not the main barrier. Instead, the challenges couples experienced seem to originate from systemic features of support provision - particularly fragmentation and a lack of coordinated pathways - rather than from the quality of individual encounters. Taken together, the findings show that support is more than just a resource; it becomes meaningful within the couple’s daily life. When support aligns with their everyday realities—emotionally, practically, and socially —it fosters continuity and a sense of security. When it does not, couples must bridge the gap between their needs and the system’s demands, navigating support as an ongoing and situational aspect of daily life.

Limitations

The sample included couples willing to participate in joint interviews, possibly causing selection bias. Couples with severe relational issues, language barriers, or advanced cognitive symptoms might have been less likely to join, a self-selection common in dementia research, leading to overrepresentation of resourceful or communicatively able participants (Bouranis et al., 2023). The study may therefore underrepresent contexts where support is more challenging or communication is severely affected. In some interviews, the person without a diagnosis led the conversation, which may have influenced what was shared and what was omitted. Such dynamics affect what is expressed and how it is negotiated (Morgan et al., 2013; Szulc & King, 2022). Such dynamics were considered in the analysis, but underline the need for methodological awareness when interpreting joint narratives.

The analysis was guided by lifeworld theory, although the interviews were not initially structured around its principles. This means the study incorporates lifeworld perspectives into its analysis without employing a comprehensive lifeworld methodological framework.

Conclusion

This study shows that support for couples living with young-onset dementia did not always match the conditions under which they lived. Couples worked continuously to maintain a sense of normal life, but partners carried substantial responsibilities. Moreover, economic strain shaped what support felt possible.

Moments of understanding were valued, yet they could not replace support that did not fit their life situation or the timing of their needs. These insights may inform practice by drawing attention to the need for support that aligns with the situations of younger couples and the ways they make sense of their daily lives. What remains less understood is how experiences unfold over time; longitudinal research could deepen knowledge of shifting support needs and how couples’ ways of navigating young-onset dementia develop across the trajectory.