Rethinking dementia support at home: bridging gaps between healthcare and the social domain

Abstract

Background

Dementia poses a rapidly increasing global and national challenge, with growing demands on home-based care systems, families, and communities. Although policies encourage people with dementia to remain at home, current support structures remain fragmented, reactive, and overly medicalized. As a result, opportunities to promote autonomy, social participation, and well-being are often missed. This study examines how professionals in healthcare and the social domain experience the organization, collaboration, and quality of home-based dementia support, and identifies ways to improve coordination and awareness of innovative social initiatives.

Methods

A qualitative study design grounded in Interpretative Phenomenological Analysis (IPA) was used. Data were collected through seven focus groups and nine individual interviews with 31 professionals from healthcare, social care, community services, and municipal organizations across the Netherlands. Interviews and focus groups were transcribed and analyzed following Graneheim and Lundman’s six-step qualitative content analysis.

Results

Professionals described dementia support as a “landscape of isolated islands,” marked by minimal interprofessional communication, inconsistent collaboration, and unclear responsibilities. Support often starts too late, focuses predominantly on medical needs, and insufficiently addresses everyday routines, autonomy, and social participation. Limited dementia-specific knowledge across sectors contributes to patronizing communication and reduced involvement of people with dementia in decision-making. Resource constraints—including staff shortages, time pressure, and bureaucratic barriers—further hinder continuity and person-centred support. Participants highlighted the effectiveness of simple, familiar, and inclusive social activities embedded in daily life, and emphasized the need for proactive promotion and a recognizable coordinating professional, such as a practice nurse, case manager, or occupational therapist.

Conclusion

Improving home-based dementia support requires stronger cross-sector collaboration, earlier and more proactive interventions, and enhanced coordination across health, social, and municipal systems. Embedding simple, meaningful, and community-based activities within everyday life, supported by knowledgeable and trusted professionals, is essential to fostering autonomy, participation, and quality of life for people living with dementia at home.

Introduction

Dementia is an umbrella term for conditions that impair memory, cognitive functioning, and the ability to carry out daily activities 1. In the Netherlands, approximately 290,000 people are currently diagnosed with dementia—a number expected to rise to over 500,000 by 2050 2. Worldwide, more than 55 million people suffer from dementia, including about 8 million in Western Europe [1, 3, 4]. Dementia is also one of the leading causes of disability and dependency among older people worldwide.

The global economic cost of dementia is estimated to exceed USD 1.3 trillion annually and is expected to rise sharply in the coming decades 5. These figures likely underestimate the true scale of the challenge. Dementia remains significantly underdiagnosed, particularly in the early stages, when symptoms may be subtle or misinterpreted [6]. As a result, many individuals miss the opportunity for early intervention and appropriate support.

Being diagnosed with dementia profoundly alters an individual’s daily life, as it is a progressive condition that gradually affects memory, independence, and social participation. However, the impact of dementia extends far beyond the individual diagnosis: it affects families, communities, and national health and social systems. As cognitive and functional decline progresses, quality of life decreases not only for people with dementia but also for their informal caregivers, who often experience emotional distress, physical exhaustion, and social isolation [7, 8]. In most Western countries, policy encourages people with dementia to remain at home for as long as possible, placing substantial responsibility on informal caregivers, who are frequently older adults themselves [9, 10].

Although professional care services are available—ranging from nurses and case managers to occupational therapists and social workers—these services are primarily focused on immediate or medical needs. The current landscape of formal and informal support tends to address deficits rather than strengths, with services largely reactive and aimed at managing symptoms instead of promoting the personal well-being, identity, and remaining abilities of the individual [11]. Even valuable offerings, such as day programs, are often rigid in design, medically oriented, and inaccessible without a formal diagnosis or referral [12] . Consequently, they frequently lack the flexibility and person-centered focus needed to respond to the evolving nature of dementia. This misalignment underscores a broader issue: despite the increasing prevalence of dementia, both people living with the condition and professionals in the field often remain unaware of the full range of support and activities available [13, 14].

Current support structures are often limited by bureaucratic barriers, insufficient interdisciplinary collaboration, and a lack of shared understanding regarding the possibilities for non-medical interventions that promote autonomy and social participation [15]. It is therefore crucial to explore how the social domain can better support people living with dementia, particularly those living at home.

In addition, communication between professionals from different care services remains inconsistent, often hindered by institutional silos, differences in language and priorities, and a lack of shared digital infrastructure [16]. These communication and knowledge gaps create barriers to integrated, proactive support and contribute to missed opportunities for enhancing well-being and quality of life, particularly in home-based settings 1.

In this study, we aim to understand how professionals experience collaboration across healthcare and social sectors, identify where communication and knowledge-sharing break down, and explore how awareness of (innovative) support options can be increased [17, 18].

Central research questions

How do professionals in healthcare and the social domain experience the current organization, collaboration, and quality of home-based support for people living with dementia?

What improvements do these professionals identify as necessary to enhance the coordination, communication, and awareness of innovative social initiatives that promote quality of life?

To answer these research questions, we took a qualitative approach and examined in depth the perspectives of professionals across healthcare, social care, and community services. This study aims to uncover systemic shortcomings and identify actionable strategies for improving the coordination, accessibility, and overall quality of support for people living with dementia.

Method

This study is part of a broader project titled Moving Towards a New Practice for People Living with Dementia and Professionals, a professional doctorate trajectory funded by the Taskforce for Applied Research SIA (part of the Netherlands Organisation for Scientific Research, NWO). The overarching aim of this project is to transform and innovate professional practices related to the care and support of people living with dementia in home settings.

Research design

This study adopted a qualitative research approach aimed at exploring the experiences of professionals involved in supporting people with dementia living at home. To capture a range of perspectives and encourage interaction between participants, focus groups were organized 19. Focus groups are particularly suitable for generating rich data through discussion and the exchange of experiences among participants.

In addition, individual interviews were conducted to complement the focus group data, address gaps in the dataset, and allow deeper exploration of personal experiences and reflections. In total, seven focus groups and nine in-depth interviews were conducted with professionals directly or indirectly involved in supporting people with dementia living at home.

Participants and recruitment

To involve a broad range of professional groups, a preparatory field study was conducted prior to recruitment. This exploratory phase included accompanying and observing professionals during home visits, as well as visiting care homes, social organizations, and community services to understand how people with dementia are supported across different settings.

The Dementia Guideline from the Dutch College of General Practitioners 20 was used as a supplementary reference to guide the identification of relevant care providers. This evidence-based guideline (NHG), provides a structured framework for recognizing, diagnosing, managing, and treating people with dementia in primary care. It also outlines the key professional groups involved in home-based dementia care, including general practitioners, practice nurses, community nurses, elderly care physicians, physiotherapists, occupational therapists, social workers, and case managers. This helped determine which professional groups were essential for inclusion in the study.

Directly involved professionals included case managers and general practitioners who provide day-to-day care and support for people living with dementia at home. Indirectly involved professionals included those whose engagement in home-based dementia care is less formal but still relevant, such as religious or cultural social workers, museum-based wellbeing facilitators, nursing home staff, municipal policy officers, and educational or training coordinators. These professionals influence how dementia support is envisioned and organized, for example through policy-making or the development of educational frameworks. Including both direct and indirect perspectives allowed for a comprehensive understanding of the professional ecosystem surrounding home-based dementia care. See Table 1 for the resulting list of involved participants.

Table 1.

Participant characteristics

Participant	Gender	Profession	Years of experience with dementia	Region	Setting
1	Female	District nurse	5—10	North Brabant	Care home
2	Female	District nurse	10—15	North Brabant	Care home
3	Female	District nurse	10—15	North Brabant	Home
4	Female	Primary care practice nurse	15—20	North Brabant	Out-patient
5	Male	Informal care giver	0—5	South Holland	Home
6	Female	Casemanager dementia	0—5	South Holland	Home
7	Female	Geriatrician	15—20	North Brabant	Out-patient
8	Female	Geriatrician	20—25	North Brabant	Out-patient
9	Female	Geriatric nurse	20—25	North Brabant	In-patient
10	Female	Geriatric nurse	5—10	North Brabant	In-patient
11	Female	Geriatric nurse	0—5	North Brabant	In-patient
12	Female	General practitioner	0—5	Limburg	Out-patient
13	Female	General practitioner	0—5	Gelderland	Out-patient
14	Female	Occupational therapist	15—20	North Holland	Home
15	Female	Occupational therapist	20—25	North Brabant	Home
16	Male	Physiotherapist	5—10	North Holland	Care home
17	Female	Physiotherapist	5—10	North Holland	Care home
18	Female	Hostess at a day activity centre	15—20	North Holland	Care home
19	Female	Municipal officer	10—15	Utrecht	Other
20	Male	Religious social worker	20—25	North Brabant	Home
21	Female	Social worker	5—10	Utrecht	Home
22	Female	Social worker	5—10	Utrecht	Care home
23	Female	Social worker	5—10	Utrecht	Care home
24	Female	Social worker	5—10	Utrecht	Home
25	Female	Social worker	0—5	Utrecht	Care home
26	Female	Social worker	0—5	Utrecht	Care home
27	Female	Social worker	10—15	North Brabant	Home
28	Male	Manager Health and innovations	10—15	North Brabant	Other
29	Female	Nursing instructor	5—10	North Brabant	Other
30	Female	Nursing instructor	5—10	North Brabant	Other
31	Female	Social worker museum	5—10	North Brabant	Other

Focus groups consisted of three to five participants and were intentionally composed as mixed groups, bringing together professionals from different backgrounds. All focus groups were conducted in person at the workplaces of the participating organizations. Participants within a focus group were typically employed by the same organization; some were familiar with each other through professional collaboration, while others had not previously worked together. These focus group participants were not acquainted with the study before, except for one focus group that was organized together with one of the co-authors and their network.

In addition to the focus groups, nine in-depth interviews were conducted to further explore individual perspectives. Five of these interviews were conducted online via MS Teams, while the remaining interviews were conducted in person.

The study specifically focused on professionals involved in supporting people with dementia who are living at home. Therefore, professionals whose work primarily focuses on individuals with advanced dementia residing in institutional care settings were not included.

Recruitment was carried out through professional networks, and via contacts available through the authors. These were gained via Fontys University of Applied Sciences, Tilburg University, and the Catharina Hospital Eindhoven. In addition, the first author established connections through national social initiatives Switch2Move [21] and DemenTalent [22], both of which actively involve people with dementia and focus on their talents and abilities rather than their care needs. Initial contact with potential participants was made by phone, email, or through intermediaries from these organizations. The resulting participants were unfamiliar contacts of the first author, ensuring an unbiased involvement. However, these organisations already support an inclusive and active role for people with dementia through their activities, which might have influenced the results.

Focus group topic list and translation to interviews

To collect qualitative data, a semi-structured approach was employed, combining focus group sessions with in-depth interviews guided by an interview protocol. This approach was chosen for practical reasons, as some participants could not attend focus groups but were essential to include for their perspectives on supporting people with dementia at home.

The development of the topic list was informed by two key theoretical frameworks. First, the Person-centred Nursing Framework [23] provided a foundation for exploring professionals’ experiences and reflections across domains such as care prerequisites, the care environment, person-centred processes, and expected outcomes. Second, the Social Health and Dementia framework [24] guided the inclusion of themes related to autonomy, participation, and the ability of people with dementia to live meaningfully and independently within their social environment.

The topic list was further refined through iterative discussions among the co-authors to ensure its relevance, clarity, and grounding in practice. Accordingly, the topic list comprised three central domains: (1) Perceptions of Organization, Collaboration, and Quality of Home-Based Support – professionals’ reflections on how dementia care and support at home are currently organized and experienced, including interprofessional collaboration; (2) Identified Needs and Opportunities for Improvement – perspectives on what is needed to strengthen coordination, communication, and overall quality of life for people with dementia; and (3) Awareness and Applicability of Innovative Social Initiatives – experiences with and assessments of well-being initiatives designed to support home-based dementia care. An overview of the topic list and sample questions used during the focus group sessions is provided in the supplementary material (Topic guide for focus group sessions and semi-structured interviews).

To ensure the clarity and practical feasibility of the questions, a pilot focus group was conducted within a long-term care facility in Amsterdam. Feedback from this pilot informed minor refinements to the phrasing and sequencing of questions. Based on the finalized topic list, the structure and content were translated into individual in-depth interviews to allow for deeper exploration of the same core themes from a personal perspective.

Analysis

The anonymized transcripts of the focus group sessions and in-depth interviews were analyzed using qualitative content analysis, following a six-step procedure based on the methodology of 25. In the first phase, all textual material was carefully reviewed to gain a holistic understanding of the data and to identify the three predefined main topics that served as the foundation for further analysis.

In the second phase, meaningful units of text relevant to the research questions were identified. In the third phase, these units were condensed into concise formulations that closely reflected the original content. Subsequently, in the fourth phase, the condensed units were coded, with each code assigned a conceptual label.

During the fifth phase, the codes were compared for similarities and differences and grouped into subcategories. In the sixth and final phase, these subcategories were further abstracted into broader overarching categories. These categories formed the basis for reflection on the underlying meanings in the data and supported the interpretation of the study findings [25].

To enhance reliability and intersubjective validation, a second student researcher was involved in the coding process. This student researcher contributed to the project as part of her graduation research. She attended the data collection sessions as an observer and was closely involved in both the coding process and the interpretation of the categories.

Data collection and quality assurance

To ensure the accuracy, credibility, and reliability of the research findings, multiple quality strategies were used. Interviews and focus group discussions were audio-recorded using a secure mobile application. Transcriptions were generated using Microsoft OneNote and were manually verified for completeness and accuracy.

Furthermore, data collection continued until thematic saturation was reached. Meaning that no new topics or insights emerged during subsequent interviews or focus groups. This criterion ensured that the thematic scope was sufficiently comprehensive and representative of participants' experiences.

Finally, the principle of thick description was applied. Rather than presenting the experiences of care and welfare professionals as isolated accounts, findings were embedded within the broader social, organizational, and normative contexts in which they occurred. Quotations are presented alongside contextual information to provide a rich and nuanced understanding of everyday professional practices in supporting people living with dementia.

Finally, regarding positionality. The first author, and the main conductor of the research activities, is an experienced geriatric physiotherapist, specialized in older adults. This experience allowed him to engage empathically with the subject with a genuine interest. The researcher did bring the perspective of a professional caregiver, which could influence the results. This was overcome by the iterative involvement of the co-authors in formulating the research set-up and questions.

Ethical considerations

Ethical integrity in this study was maintained through adherence to established guidelines on research involving human participants. Informed consent was obtained from all participants following the distribution of an information letter that clearly described the study’s objectives, procedures, potential risks, and the voluntary nature of participation. Participants were assured of their right to withdraw at any time without consequence.

Data security was rigorously maintained. All personal data were pseudonymised to protect participant identities and were securely stored within the Fontys research drive environment, with access strictly limited to the research team. Data handling and storage practices complied with the General Data Protection Regulation (GDPR; Regulation (EU) 2016/679), as implemented in Dutch law through the Algemene Verordening Gegevensbescherming (AVG). Institutional data-retention policies were followed, stipulating a maximum storage period of fifteen years.

Furthermore, the study was reviewed and approved by the Fontys Committee on Ethics in Research (FCEO) (197aAntonissen24112025), which concluded that the research did not fall under the scope of the Dutch Medical Research Involving Human Subjects Act (WMO). The protocol adheres to the ethical principles outlined in the Declaration of Helsinki. All participants provided informed consent prior to the start of the study.

Results

In total, 31 professionals from 17 different professional practices participated in the study. They represented a diverse range of disciplines within the health and social care sectors, spread across multiple provinces in the Netherlands (Table 1). The focus groups were conducted at the workplace of the professionals in the cities Tilburg, Eindhoven, Hilversum and Dordrecht.

Analysis of the interviews and focus groups yielded four main themes in response to the first research question, which explored how professionals in healthcare and the social domain experience the current organization, collaboration, and quality of home-based support for people living with dementia: (1) Care support as a landscape of isolated islands, (2) Timing and focus of support, (3) Specific knowledge about dementia, and (4) Resource constraints.

For the second research question, which focused on identifying suggested improvements to enhance coordination, communication, and awareness of social initiatives, two themes emerged: (1) Centralized Control and (2) Keep it Simple. These themes build directly on the barriers identified in the first research question, suggesting ways to overcome fragmentation and complexity by providing a clear coordinating role and promoting accessible, user-friendly social initiatives.

Care support as a landscape of Isolated Islands

Conversations with healthcare and social care professionals revealed that support for people with dementia at home is often fragmented. Many described the situation as a landscape of isolated islands, meaning that different initiatives, organizations, and disciplines coexist but remain insufficiently connected.

A social worker from a national organization that empowers people with dementia explained:

“Sometimes it really feels like working on islands, you know. Care institutions often say: ‘Yes, we offer daytime activities,’ but they don’t look beyond that. For example, they’re not even aware of things like the ‘Kwiek route’ [a support route to walk outside].”

Collaboration between healthcare and social care often depends on chance or individual initiative. If a key person leaves, projects can quickly come to a halt. Professionals frequently lack awareness of what others are doing, leading to duplicated efforts or blind spots in support. A Nursing instructor observed:

“The actual collaboration and co-creation often fall short. Someone takes the lead, puts their name on it, and that’s it. The sense of urgency isn’t really felt. It’s all too non-committal.”

The challenge is especially pronounced in large municipalities, where scale and staff turnover complicate cooperation. In smaller towns and villages, by contrast, communication lines are shorter, familiarity is greater, and support is more quickly established. A religious social worker focused on elderly welfare noted:

“What we do—and that’s important—is look at how it works in a village. It’s organized very differently than in a city. In a village, everyone knows each other, and that sense of connection and control has largely been lost in urban areas.”

Across interviews and focus group sessions with different health- and social care professionals, the primary care practice nurse and the dementia case manager were seen by social care workers, occupational therapists, municipal officers and geriatrics as pivotal actors, bridging medical and social support. However, their effectiveness is constrained by limited time, unclear responsibilities, and insufficient overview of the social domain. As one municipality officer noted:

“People with dementia are known to the case managers, and they’re real multitaskers. But because they’re so busy, they invest little in social activities. As a result, people with dementia are often unaware of what social support is available.”

At the same time the interviews and focus groups highlighted that municipalities in the Netherlands play a crucial role in facilitating social activities close to where people live, so that individuals do not have to travel long distances to participate. In practice, however, the scope and nature of this support vary considerably. Some municipalities take an active lead, investing in dementia-friendly initiatives and creating accessible opportunities for social engagement, while others are less involved. Several professionals report that collaboration with municipalities is often hindered by bureaucracy, frequent staff changes, or unclear frameworks. A municipality officer admitted: “We lack collaboration within the municipality itself.”

Timing and focus of support

Professionals emphasized that assistance often begins too late. Early signs of dementia may be masked or minimized, leaving caregivers overwhelmed before formal help arrives. A primary care practice nurse reflected:

“What’s difficult is that people seem fine during consultations, but at home and with their partner, problems arise. The caregiver becomes overwhelmed because they no longer understand their partner. It leads to a lot of conflict. It’s hard to assess and respond to that.”

When support is eventually offered, it tends to focus primarily on medical care and symptom management. Preventive guidance and activities that could enhance quality of life early on—for both the person with dementia and their caregiver—often receive too little attention. Dementia is still too often approached solely as a disease leading to inevitable decline, which means the potential of early interventions aimed at self-reliance, meaning, and social connection remain underused. As a result, valuable opportunities to prevent overburdening and to maintain stability at home for longer, are missed. A nursing instructor comments: “Healthcare could take a step back—it’s not just about healthcare. Social care needs to be more at the forefront.”

Specific knowledge about dementia

According to the participants, a major barrier lies in the limited knowledge of dementia among many professionals, which often results in inappropriate or ineffective action. Healthcare providers, social care workers, and volunteers frequently lack the skills to respond to the specific characteristics of dementia. Communication can easily become unintentionally patronizing: professionals tend to talk about the client rather than with them, and discussions often remain stuck in meetings without leading to concrete action. Many professionals feel insecure, either underestimating or overestimating the abilities of people with dementia, or withdrawing altogether when faced with so-called “difficult behaviour.” The result is little space for autonomy, and people with dementia are seldom involved in decisions about their own lives.

An occupational therapist reflected: "Once the diagnosis is made, a dementia case manager is immediately assigned, and, perhaps somewhat bluntly put, they immediately start directing things toward day care. I think that in this process, what people with dementia and their caregivers often consider important and meaningful is not always properly taken into account."

This connects to another crucial signal: many people with dementia have lost their sense of initiative. This loss of initiative is not only a consequence of the disease itself but is reinforced by several factors. People often lose confidence in their abilities through negative experiences, feel unmotivated when they are not taken seriously, or encounter activities that are too healthcare-focused, insufficiently stimulating, or poorly matched to their interests. As a social worker explains: "There is simply too much—so many initiatives that they overwhelm people, taking away the ordinary rhythm of life and making it harder to maintain natural human behaviour."

As a result, a dependent care relationship can quickly emerge, in which individuals lean heavily on others—especially when family members take over everything. A social worker in a museum offering programmes for people with dementia remarked: “There’s a piece of misunderstanding, being unheard, unseen—and that can result in the feeling that you no longer matter.”

Professionals increasingly highlight the importance of understanding how people with dementia themselves experience their situation. Their emotions, resilience, and coping strategies are often overlooked. Many feel defeated, confused, or ashamed about memory loss, and find it difficult to talk about—or choose denial instead. Some are able to mask their condition for years, especially when family members unconsciously take over daily tasks. As one GP explained:

“No, it really takes many years. First, it takes years before a patient even realizes it. And those years are filled with denial, cover-up, avoidance. And the family doesn’t notice either—because unconsciously, they take over the care.”

This highlights how memory issues often remain hidden in the early stages. It also illustrates that there are significant interindividual differences in how dementia is experienced—for instance, depending on whether cognitive decline progresses gradually or rapidly. Knowledge about these variations is often lacking in professionals, even though understanding them is crucial to fully grasp the lived experience of dementia.

Differences also appear between older and younger people with dementia. Younger individuals are usually more receptive to support, while older people often show more resistance to accepting help and to participating in care programs. A dementia case manager adds: “Whether the help works also depends on the person’s age. Younger people with dementia are more approachable and open to help. Older people often have a heavier care burden, also due to other physical problems.”

Resource constraints

Living at home with dementia often involves high needs but at the same time, there is little structural support. Due to staff shortages in home care, only minimal contact is provided, leaving hardly any room for personalized attention. Case managers and other healthcare professionals report that they simply lack the time to offer tailored care, coordinate care effectively, or pick up on changing needs. A geriatrician remarks:

“Home care is barely available; people get a diagnosis—which feels like an ill fate—and then they’re left to figure things out on their own for a long time.”

Financial barriers add to this challenge. Care covered by insurance is often limited, non-transparent, and difficult to access—especially for people with middle incomes who fall outside the scope of social care support.

The findings from the above themes reveal how professionals experience the current organization, collaboration, and quality of home-based support for people living with dementia, highlighting various gaps and challenges. Building on these insights, the following section focuses on the improvements that health- and social care professionals consider necessary. Specifically, it examines the types of activities available, the key conditions required to ensure their effectiveness and meaningful engagement, and how these activities can best be implemented, evaluated, and delivered.

Aligning activities with everyday life and existing routines

Professionals emphasized that activities for people with dementia should be simple, familiar, and closely aligned with daily routines to prevent participants from feeling overwhelmed. Activities need to connect with participants’ everyday lives and interests without placing excessive demands on cognitive abilities. Complex, fast-paced, or cognitively demanding activities often lead to disengagement, whereas straightforward, routine-based approaches foster familiarity and encourage sustained participation. As one primary care practice nurse explained: “You have to make it super simple—two buttons and you’re done, for example.”

Ensuring that persons living with dementia feel personally addressed and supported, particularly in relation to technology or new initiatives, further enhances engagement and promotes meaningful involvement in daily life. Simplicity also applies to the organization and continuity of activities. Participation should be as normal as possible, often requiring local adaptation and a redefinition of participants’ roles. Activities that rely on a single key person or are located far away frequently fail to maintain engagement over time.

Inclusivity was highlighted as equally important: initiatives should mix people with and without memory problems to reflect everyday social life. As one occupational therapist noted: “It has to be accessible for everyone. Everyone is welcome. The mix of people with and without memory problems—that’s how society is, and that’s how a social activity should be.”

Flexibility and personalization are essential to meet the changing needs of people with dementia. Because dementia is a progressive condition, participants’ roles within activities must be continually reassessed. Activities that foster emotional connection, social participation, and shared experiences are especially beneficial, as they can be adapted to the changing abilities and needs of people with dementia. A social worker concluded: “A client can change, right? A client is no longer who they once were.”

Promotion of activities

The scope of available activities must also include effective communication and promotion. Many people with dementia and their families become lost in the large, municipality-specific offerings. Social activities often receive less attention than medical care, leaving families unsure where to start. As a dementia social worker explained: “It’s very diffuse. There is so much that people can’t see the forest for the trees. If you don’t know something exists, you won’t go looking for it. We still think too often in medical solutions: doctor, pill, done.”

Passive promotion, such as distributing leaflets, is usually insufficient. Personal and proactive approaches via trusted professionals—particularly general practitioners—prove more effective. An informal caregiver emphasized: “GPs should recommend it—if a GP says it, more people will use it.”

A broad range of promotion channels is needed to reach different target groups. Digital tools such as social media, short videos, and neighbourhood apps work well for younger people with dementia, while local, tangible means—such as community newspapers, posters, monthly calendars, handwritten GP referrals, and flyers in GP practices, libraries, or supermarkets—are more suitable for older generations. A geriatrician observed: “I have the feeling—but I haven’t studied it—that handwritten letters make people feel truly heard: this is especially for me, someone has taken the time.”

It is important that logos, visual symbols, and language are inviting and non-stigmatizing, and that communication resonates with the daily lives and interests of the target group. Mobilizing community resources—such as neighbours, volunteers, and church groups—strengthens the sustainability and visibility of activities. Familiar faces and recognizable settings make participation feel like a natural part of daily life rather than a care intervention. An occupational therapist explained: “Introduce social initiatives right away, make sure everything works, and do it immediately. Inform the family in advance—that often works best.”

Central coordination

The fragmented nature of dementia care and the scattered availability of social activities—often described by professionals as “isolated islands”—highlights the need for a trusted and recognizable coordinating actor. Professionals frequently point to the case manager or practice nurse as natural candidates for this role. These coordinators should maintain direct communication channels with both healthcare and social care professionals and have a comprehensive overview of available and appropriate social initiatives. A GP described the role of central coordination: “Then a case manager is brought in, and they monitor the situation together. Step by step, more care forms around the patient.”

Occupational therapists identify themselves as providing added value by bridging the gap between people’s abilities and the support they need, focusing on participation rather than limitations. However, they remain underutilized because their value is not widely recognized, often being introduced too late despite the significant potential benefits in early-stage dementia. An occupational therapist explained: “I would also want the practice nurses and the case managers to play a more active role. Then you’d have a strong network entering people’s homes. We don’t all have to be involved all the time, but if we align who does what, we can act quickly and focus more on preventive care—instead of cleaning up the mess afterward.”

Dutch municipalities also emerge as crucial in creating accessible local initiatives and supporting sustainable collaboration among stakeholders. Yet professionals emphasized that this requires stronger leadership and less bureaucracy. A GP added: “Yes, I believe that municipalities could certainly take more leadership in this. For example, by offering training programs, but also by inviting people who reach a certain age, for instance 75, to come in for a conversation. In this way, they can be involved in a meeting for 75-year-olds, where they can also contribute themselves. It is important that municipalities have a clearer picture of these people, so that they can indicate which matters are relevant to them based on their age. Families should also be involved in this process.”

Discussion

This study explores how professionals in healthcare and the social domain experience the current organization, collaboration, and quality of home-based support for people living with dementia. Findings show that such support remains fragmented and overly medicalized. Professionals described the organization of dementia care as a “landscape of islands,” meaning that communication between professionals is limited, initiatives often exist in isolation, and structural integration is lacking. Participants noted that collaboration is frequently coincidental, easily disrupted, and particularly challenging in large municipalities, whereas smaller communities benefit from shorter lines of communication. Literature suggests that such fragmentation makes care highly dependent on individual initiatives and vulnerable to staff turnover or organizational change [26]. Scarce time, staff shortages, and financial barriers further constrain personalized and continuous care, leaving families to cope largely on their own during the early stages of dementia.

A central challenge in dementia care is the quality of home-based support, which often lacks both timing and focus. Support is frequently initiated too late, partly because early signs of dementia can be subtle, easily masked, or minimized by patients and families. Research indicates that home care services frequently operate according to predetermined routines rather than individualized needs, resulting in care that is insufficiently tailored to the person’s condition or stage of dementia [27]. This routine-based approach can delay recognition of emerging needs, contributing to a lag in appropriate support. Stephan et al. [28] similarly found that people with dementia and carers often struggle to access timely help and feel uncertain about when and how to seek services, underscoring that delays in support are not only organizational but also linked to limited clarity for users themselves. Moreover, systematic reviews show that dementia-specific interventions are limited and poorly integrated with broader health and social care systems [29], which may further exacerbate delays or inadequacies in support.

By the time support is provided, caregivers are often already overwhelmed, and interventions tend to prioritize medical care and symptom management over preventive guidance or social measures that could enhance quality of life, with insufficient emphasis on individuals’ strengths, capabilities, and potential [1, 20] . As a result, opportunities to support autonomy, prevent caregiver burden, and maintain stability at home are often missed [26]. Stephan et al. [28] reinforce this point: their participants repeatedly emphasized that available services are often reactive rather than preventive and that psychosocial or community-based support is insufficiently visible or accessible.

Limited knowledge of dementia among professionals can lead to patronizing communication, which may make people with dementia feel devalued or withdrawn [30]. Our results indicate that discussions are often conducted about rather than with people living with dementia, limiting their involvement in decision-making. This aligns with Alsawy et al. [31], who found that only one of fifteen studies included people with dementia as primary informants. Stephan et al. [28] add an important nuance here: people with dementia in their study reported that feeling excluded from conversations or not being taken seriously acted as a major barrier to seeking formal care. This suggests that communication challenges not only affect relational dynamics but may directly influence whether individuals engage with services at all. Professionals may also over- or underestimate abilities or withdraw in response to challenging behaviours [18, 32], further restricting autonomy and meaningful engagement.

In addition, informal care networks may play a supportive role in communication and service engagement, although this was not explicitly highlighted by respondents. Adult children and other informal caregivers can facilitate communication between people living with dementia and healthcare professionals by supporting information seeking, understanding care options, and encouraging participation in social activities. Research indicates that open and ongoing communication between family or informal caregivers and professional caregivers can contribute to trust, information exchange, and more aligned care delivery, which may enhance the engagement of both caregivers and people living with dementia [33] . In this way, informal caregivers may indirectly contribute to both medical communication and broader engagement in community-based initiatives. Recognizing the potential contribution of informal care networks may therefore strengthen strategies aimed at improving access, participation, and continuity of care, particularly when multi-channel and person-centered communication approaches are used.

The expertise and presence of key professionals, particularly primary care practice nurses and dementia case managers, are critical for improving coordination and supporting people with dementia. Primary care practice nurses often serve as the first point of contact, bridging medical, psychological, and social support, while case managers oversee the care trajectory and coordinate access to services. Previous studies indicate that practice nurses are crucial for early identification and timely interventions [20] and case managers play a central role in maintaining continuity and preventing fragmented care [34]. This study further highlighted occupational therapists as providing valuable support in maintaining daily routines, participation, and autonomy, although participants noted they are often introduced too late, limiting early preventive interventions. Literature confirms the importance of these roles: [7] show that occupational therapy preserves functional abilities, and the [1] recommends embedding such roles in primary care to enhance continuity and proactive, person-centered care.

Building on these insights, we studied what improvements professionals consider necessary to enhance the coordination, communication, and visibility of innovative social initiatives that promote quality of life. Our results indicate that social activities for people with dementia are most effective when they are simple, familiar, and embedded in everyday routines, connecting to participants’ lives and interests without causing overwhelm, and fostering participation, autonomy, and emotional engagement. These findings are reinforced by Alderliesten and Ramaker [12], who show that tailoring activities to individuals’ daily lives and personal preferences enhances engagement and overall well-being, and by Dupuis et al. [32], who emphasize that routine-based and familiar activities help preserve identity, support social inclusion, and maintain meaningful participation.

Professionals emphasized that inclusivity is essential, ensuring that activities accommodate both people with and without dementia, reflecting natural social environments. Flexibility is also critical, as participants’ abilities and needs change over time.

Effective promotion and accessibility of social activities for people with dementia are equally important, as passive approaches, such as leaflets, are insufficient. Personal and proactive communication via trusted professionals, particularly general practitioners and case managers, is essential, a point supported by the research of Sorrentino et al. [26], who found that participation is often hindered by unclear access pathways, fragmented care services, and logistical or cultural barriers. They emphasize that having a single trusted professional — a “key contact person” — can significantly facilitate access and engagement by providing guidance and continuity of care. To reach diverse populations effectively, multiple channels should be used, combining local, personalized methods for older adults with broader community networks to increase visibility and accessibility, while familiar settings and trusted faces help embed participation naturally into daily life.

Central coordination is needed to overcome fragmentation and improve alignment between health and social care. Case managers and practice nurses are seen as natural coordinators, maintaining communication across sectors and ensuring appropriate services are accessible. Municipalities play a critical role in creating accessible initiatives and supporting sustainable collaboration among stakeholders, though their involvement varies. According to Sorrentino et al. [26], stronger leadership, clearer responsibilities, and reduced bureaucratic barriers are necessary to facilitate proactive engagement and coordinated, preventive support.

To translate these insights into practice, a structured co-creation approach is essential. Professionals emphasized that meaningful change requires rethinking how support is organized and aligned. Design-driven approaches—such as living labs or iterative co-creation—can help articulate shared goals, map existing barriers, and prototype new service models across sectors. Importantly, designing the service itself can serve as a research method: by actively creating and testing service prototypes, researchers and practitioners can generate rich insights about what works in real-world contexts, uncover unforeseen challenges, and iteratively refine solutions. Rather than producing isolated interventions, these processes support the emergence of an integrated model that strengthens continuity, clarifies roles, and embeds successful elements such as trusted contact persons, flexible coordination, and everyday meaningful activities. This participatory approach offers a practical mechanism to reduce fragmentation and ensure that innovations genuinely meet the needs and living contexts of people with dementia and their families. The findings of Stephan et al. [28] further support the need for such participatory redesign, as their participants emphasized the importance of being involved, informed, and supported throughout the care journey.

Strengths and limitations of this study also need to be considered when interpreting these findings. Strengths include its qualitative, exploratory design, combining focus groups and interviews to capture in-depth, lived experiences across multiple regions and professional backgrounds. Triangulation and expert validation enhance reliability. Limitations include a relatively small sample and reliance on self-reported experiences, which may limit generalizability. Additionally, the findings are context-specific to the Dutch healthcare system; care structures and professional roles may differ in other countries, which could affect the applicability of the results elsewhere. Future research could benefit from larger, mixed-methods or longitudinal study designs to examine how collaboration and initiatives develop over time.

Strengths and limitations of this study should be considered when interpreting these findings. A major strength of the study is its qualitative, exploratory design, which enabled an in-depth understanding of professionals’ experiences across different regions and occupational backgrounds. The combination of focus groups and individual interviews allowed methodological triangulation, thereby strengthening the reliability of the analysis.

Several limitations should also be acknowledged. The relatively small sample size and the use of self-reported experiences may have contributed to response bias and may limit the generalizability of the findings. In addition, hierarchical relationships within healthcare organizations may have influenced participants’ responses, potentially leading to socially desirable answers. Future research could reduce this risk by conducting focus group sessions within homogeneous professional groups, thereby creating a safer environment for open and authentic expression of experiences.

The findings are context-specific to the Dutch healthcare system, where organizational and professional structures may differ from those in other countries. Caution is therefore warranted when generalizing the results internationally. Comparative cross-country research may provide further insight into how institutional and cultural factors influence collaboration in healthcare.

Although financial aspects and cost-related consequences of this study were out of scope, they play an important role in the future. Additional roles and coordination for care professionals might result in higher costs in the short-term; however, we see many benefits in improving communication and collaboration as presented in this paper. This might even result in a reduction of cost in the long-term. Future research should also integrate health economic perspectives to further explore the relationship between collaborative care models and healthcare expenditures.

Future studies are encouraged to use larger samples, mixed-methods approaches, and longitudinal designs to better understand the development of collaboration, care organization, and financial considerations over time. In addition, intervention-based research may be conducted to evaluate organizational strategies and team-based collaboration in real-world practice.

Conclusion

Professionals perceive dementia care as fragmented, reactive, and overly medicalized but identify clear opportunities for improvement. Strengthening the roles of practice nurses and case managers, introducing occupational therapy earlier, and investing in meaningful, familiar, and inclusive social activities are critical steps. Achieving these improvements requires closer collaboration across healthcare, social care, and municipal systems, supported by proactive, personalized communication. By embedding coordination, preventive interventions, and person-centered approaches, dementia care can evolve into a more integrated system that supports autonomy, participation, and quality of life for people with dementia and their families.

International organizations and reports

WHO

World Health Organization

OECD

Organisation for Economic Co-operation and Development

GBD

Global Burden of Disease

ADI

Alzheimer’s Disease International

Eurostat

Statistical Office of the European Union

Research and educational institutions/funding

SIA

Taskforce for Applied Research SIA (part of NWO)

NOW

Netherlands Organisation for Scientific Research

Methodology and research approaches

IPA

Interpretative Phenomenological Analysis

Healthcare and guidelines (Netherlands)

NHG

Dutch College of General Practitioners

M21

NHG Dementia Guideline (guideline code)

GP

General Practitioner

Legislation/ethics

GDPR

General Data Protection Regulation

AVG

Dutch Implementation of GDPR (Algemene Verordening Gegevensbescherming)

FCEO

Fontys Committee on Ethics in Research

WMO

Dutch Medical Research Involving Human Subjects Act

Appendix

Topic guide for focus group sessions and semi-structured interviews.

Participant characteristics:

• In which region are you currently employed?

• What is your professional role in the provision of care and/or social support for people living with dementia?

• In which care setting do you perform your professional duties (e.g., home-based care or other relevant settings)?

Experiences and perspectives on care provision

• How do you experience the current provision of social care and support for people living with dementia in daily practice?

• What is your perspective on the organisation and delivery of care and social support services for people living with dementia?

• Which aspects of current guidance and support are perceived as insufficient?

• Which elements of care and support are functioning well, and which areas require improvement? Please elaborate and provide examples where possible.

Interprofessional collaboration

• To what extent do you collaborate with other healthcare, social care, or community organisations in supporting people living with dementia?

• How do you experience current interorganisational collaboration within healthcare and social care networks?

• Which additional stakeholders or partners would you consider valuable to involve in the support network for people living with dementia, and why?

Existing social activity initiatives

• Which alternative approaches or social activity initiatives do you encounter in professional practice or learn about through colleagues or other care providers, and how are these initiatives experienced in practice? Please elaborate.

• Several social activity initiatives have been developed for people living with dementia, such as walking and exercise routes in various cities and towns (e.g., Kwiek movement routes), “The Switch”, and “Onvergetelijk van Abbe” in Eindhoven. To what extent do you recommend such initiatives in your professional practice? Are you aware of other similar initiatives?

• What factors influence your decision to recommend or not recommend these initiatives?

• In your opinion, why are such social activity initiatives not sufficiently utilised by people living with dementia?

• How could the accessibility, acceptance, and implementation of these initiatives be improved?

• In what ways could you contribute to increasing awareness, uptake, or implementation of these initiatives?

• What role should other professional sectors and societal actors play in promoting these initiatives (e.g., municipalities, volunteers, healthcare professionals, and other stakeholders)?

• What conditions are required to facilitate broader adoption and sustained use of social activity initiatives among people living with dementia?

Authors’ contributions

All authors conceived and designed the article. FA conducted the qualitative study and analysis. EW, RB, and CL made significant contributions to the theoretical concept and analysis. FA drafted the text, and all authors have read and approved the manuscript.

Funding

Not applicable.

Data availability

The datasets generated and analyzed during the current study consist of qualitative interview and focus group transcripts containing sensitive information about participants’ professional experiences. Due to confidentiality requirements and GDPR/AVG regulations, these data cannot be publicly shared. De-identified excerpts relevant to the findings are included in the article. Additional anonymized materials may be made available upon reasonable request to the corresponding author, provided that such access complies with institutional and legal data protection policies. All data are securely stored on the Fontys Research Drive and retained in accordance with institutional retention guidelines.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.