Facilitators and Barriers to Early-Stage Dementia Care: A Qualitative Study on the Perspectives of Persons with Dementia, Informal Caregivers, and Healthcare Professionals

Facilitators and Barriers to Early-Stage Dementia Care: A Qualitative Study on the Perspectives of Persons with Dementia, Informal Caregivers, and Healthcare Professionals | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Facilitators and Barriers to Early-Stage Dementia Care: A Qualitative Study on the Perspectives of Persons with Dementia, Informal Caregivers, and Healthcare Professionals Sanne C.E. Balvert, Romano D. Vries, Rose Marie Dröes, Leonie N. C. Visser, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6863817/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background: While timely support can benefit persons with dementia (PwD) and their informal caregivers, the period between recognizing the first symptoms and receiving a formal diagnosis is often prolonged. Barriers like stigma, denial, and symptom misinterpretation hinder the acceptance of care, leaving many without adequate support. Identifying strategies to reach PwD earlier and overcome these barriers is crucial. This study aimed to (i) explore the needs of community-dwelling PwD and informal caregivers; (ii) gain insight into facilitators and barriers for support; and (iii) identify strategies used by healthcare professionals to improve early-stage care acceptance, and whether geographical context influenced this. Therefore, we explored the perspectives of all stakeholders involved. Methods: This qualitative study used a cross-sectional design. We recruited 35 dyads of PwD (mean age 77.7±7 years; 51% female) and informal caregivers (70.0±14 years; 60% female) through daycare centres and memory clinics in the Netherlands. Healthcare professionals (N=47; 87% female; 38% dementia case manager) were contacted via regional dementia networks. Open-ended questionnaires were used to assess dyads’ experiences and needs. Healthcare professionals participated in semi-structured interviews on how to effectively reach dyads. Audio-recorded interviews were transcribed. Thematic content analysis was used on all data by two independent coders to identify key themes. Results: Retrospectively, dyads indicated a strong need for timely knowledge, practical resources, and peer support in the early-stage. Dementia case managers were considered crucial for accessing support. Effective strategies for professionals to improve early-care acceptance included: community engagement and accessibility, increasing visibility through education and awareness, a personal approach based on patience and trust, and better collaboration with other organisations to maintain short lines of communication. Barriers to help-seeking included stigma, lack of awareness, misalignment of services and needs, bureaucratic complexity, and difficulty navigating the healthcare system. Professionals stressed the need for tailored outreach strategies, because of perceived differences between city and rural regions in effectiveness of strategies as well as dyads’ needs. Conclusion: Early-stage support should be made more visible in communities and tailored to individual needs. Reducing stigma and bureaucratic complexity, while strengthening local facilitators, may improve access to timely and meaningful support. dementia early-stage dementia care informal caregivers healthcare professionals facilitators barriers qualitative content-analysis Introduction As the global population ages, the prevalence of dementia is rising at an alarming rate. The number of people with dementia is projected to nearly triple to 152 million by 2050 ( 1 ). An early diagnosis of dementia enables timely access to information, support, services, and appropriate care. It provides clarity for persons with dementia and their families, and more importantly, allows persons with dementia to participate in informed decision-making while they still can ( 2 , 3 ). People with dementia often express a desire to preserve their autonomy and remain independent and in control for as long as possible ( 4 , 5 ). Receiving a timely diagnosis gives persons with dementia and their families the opportunity to plan for the future, seek legal and financial advice, and to receive timely support ( 2 ). An earlier diagnosis can also enable the person with dementia to adopt healthier lifestyle changes, potentially delaying symptom progression ( 6 ). Timely use of community-services and support can also help delay the institutionalization of the person with dementia ( 4 , 7 ). Early recognition of dementia thus offers several advantages that can improve the quality of life of persons with dementia, as well as of their informal caregivers and relatives ( 2 ). Previous research has shown that support provided at an early stage was more effective in improving well-being of the caregiver than support offered at a later stage of dementia ( 8 ). Moreover, the timing of when people with dementia and their informal caregivers accept professional support and care is crucial, as it can influence the trajectory of the caregiving situation ( 4 ). Early-stage intervention may better equip all parties involved to cope with dementia progression and adapt to changes in family dynamics at home, as persons with dementia at this stage can still fully contribute and express their needs and preferences ( 2 , 9 ). Healthcare professionals recognize the importance of timely support in dementia care and employ various strategies to facilitate the acceptance of care ( 4 ). Nevertheless, these efforts are not always successful, and professionals often express concerns that support is provided too late to be truly effective. There is often a prolonged period between recognizing the first symptoms and receiving a formal diagnosis, which can range from several months to several years, also known as the diagnostic delay ( 10 ). Several factors contribute to this delay in diagnosis, including individuals being reluctant to seek help due to barriers such as stigma, denial or fear ( 4 , 5 , 11 ), insufficient knowledge about dementia, and a lack of awareness of available services ( 4 , 11 ). There is still a lack of knowledge about how to overcome these barriers effectively. Early symptoms can also frequently be mistaken for normal aging, which can lead to misinterpretation by general practitioners, resulting in a high rate of underdiagnosis in primary care ( 2 , 12 ). Research has shown that while people with dementia frequently report needing help in coming to terms with their situation or finding strategies to cope with their difficulties, they often do not have a clear idea of how these needs should be met, which may further complicate timely help-seeking and support ( 13 ). Consequently, the pre-diagnostic and help-seeking period in dementia can be a long and challenging experience. Even after receiving a diagnosis, informal caregivers may postpone or avoid the use of formal care, because they do not feel the support is necessary, even when experiencing significant burden ( 4 , 14 ). Additionally, informal caregivers may refrain from seeking help because they believe that caring for a family member with dementia is their personal or family responsibility ( 11 ). The non-utilisation of services is further influenced by the reluctance of the person with dementia to accept care, fear of losing autonomy, and lack of awareness of the existing services available to them ( 4 , 5 , 15 , 16 ). Furthermore, people with dementia and their caregivers residing in more disadvantaged regions often have less awareness of, and fewer options for, available support ( 17 ). As a result, by the time a person with dementia or their informal caregiver seeks or receives formal care, it is often too late for optimal support ( 4 ). By that time, the difficulties at home may already be so severe that community-based care has limited effectiveness, and admission to residential care may soon follow ( 7 ). To improve the timing and acceptance of care, it is essential to better understand the needs of people in the early stages of dementia and the barriers that prevent them from seeking or accepting help. Developing strategies to facilitate earlier diagnosis and intervention is crucial for improving symptom management, decreasing caregiver burden, reducing costs, and delaying institutional care. However, active involvement of the person with dementia in designing early-stage interventions is limited, despite its potential to enhance acceptance and uptake ( 18 ). For this reason, we explored the perspectives of all stakeholders involved: people with dementia, their informal caregivers, and healthcare professionals. The goals of this study were to explore the experiences of community-dwelling persons with dementia and their informal caregivers in the early stages of the disease to examine their needs regarding early-stage support, and what hindered or enabled their access to care. We also examined how healthcare professionals try to reach people with dementia and their caregivers, by collecting information on both successful and unsuccessful strategies employed by healthcare and welfare organizations to facilitate timely use of available services. By addressing these goals, this study sought to provide valuable insights that could contribute to the improvement of early-stage dementia care, and ultimately enhance the quality of life for those affected and their informal caregivers, while reducing the long-term burden on healthcare systems. Methods Design This qualitative study was part of a larger research project called “Eerder Erbij” (ZonMw grant number: 852002106). The current study used a cross-sectional design and collected information on: (i) the needs of community-dwelling persons with dementia and their informal caregivers in the early stages of dementia; (ii) the facilitators and barriers for support; and (iii) strategies used by healthcare professionals to improve the acceptance of early-stage care. Open-ended questionnaires were used to assess the perspectives of the person with dementia and their informal caregiver, hereinafter referred to as dyad, and semi-structured interviews were held to examine the perspectives of healthcare professionals. Ethical approval The “Eerder Erbij” study was conducted according to the principles of Helsinki and all participants gave informed consent. No interview was conducted before obtaining written informed consent. The study was declared by the Medical Ethics Committee of the Amsterdam University Medical Centre (METC-2021.0295) as research not subjected to the Medical Research Involving Human Subjects Act. Participants and Procedure All participants were recruited between July 2021 and June 2022, which coincided with the global pandemic caused by COVID-19. Due to the restrictions on physical and social contact, data were collected either through postal questionnaires or through semi-structured interviews conducted online. People with dementia and informal caregivers The persons with dementia and caregivers were recruited through elderly care organisations, such as dementia daycare centres and memory clinics. They were approached by healthcare professionals, who informed potential participants of the study and provided more information on what participation entailed. When interested, dyads received written information explaining the study and an informed consent form. Upon receival of a signed informed consent form, a questionnaire was sent. Due to COVID-19 restrictions at the time of data collection, participants were asked to complete the questionnaires at home. We informed them that they could contact the research team by phone if they had any questions or required assistance. To map out the wishes and needs of the persons with dementia and their caregivers as broadly as possible, the aim was to recruit around 36 dyads. To be eligible for the study, the person with dementia had to live at home, and had to have a dementia diagnosis or experience severe cognitive impairment suggesting dementia and had to be able to give informed consent. The informal caregiver could be the partner, a child or someone else close to the person with dementia. If the caregiver did not live with the person with dementia, they had to care for the person with dementia at least three times a week without receiving payment. Participants were recruited as dyads and were asked to fill out the questionnaire together. Healthcare professionals Healthcare professionals were recruited through regional dementia networks and a network of daycare- and healthcare organizations that had been involved in a previous study (19) and through snowball sampling. After giving informed consent, each professional was invited to participate in an interview. The interviews were conducted online by two members of the research team (SB and HdV; researcher and research assistant, both female). All interviews were audio-recorded, and lasted approximately one hour on average. If healthcare professionals were unable to participate in an interview due to time- or other constraints, they were asked to complete a survey containing the same questions as the interview. The aim was to approach 30 healthcare professionals from different occupational backgrounds in order to capture a broad range of perspectives regarding support in early-stage dementia. Inclusion criteria for the healthcare professionals were that they had to work for an elderly care organization, e.g., dementia daycare centre, district nurse or domestic care, because they had to have experience in working with community-dwelling persons with dementia and informal caregivers. Healthcare professionals whose only experience with persons with dementia was in residential care were not included in the study. Materials Surveys for people with dementia and informal caregivers Dyads completed a structured survey including sociodemographic characteristics, such as age, gender, educational level and relationship to each other. The person with dementia provided additional information regarding their diagnosis, while the informal caregiver was asked about other responsibilities in addition to caregiving (e.g., work or family obligations). The survey further addressed needs for support when symptoms first emerged and at the time of diagnosis, including the type of help that would have been useful in the early stages, preferred timing of support throughout the course of the disease, and the type of services actually used at that time. Participants were also asked how healthcare professionals could have assisted them in the early stages, and whether they encountered difficulties in finding help during that time. All survey questions are available in Supporting Information: Appendix A. Semi-structured interviews with healthcare professionals Healthcare professionals were interviewed using a semi-structured guide. Initial questions addressed socio-demographic and work-related characteristics, including the region where they worked, their professional role, and years of experience in elderly care. Subsequently, questions focused on strategies to reach persons with dementia and their informal caregivers at an early stage, collaborations with other organizations to support these efforts, and ways to identify care needs upon initial contact. Professionals were also asked to reflect on barriers and facilitators to early engagement, as well as to evaluate which strategies were considered successful or unsuccessful in promoting early-stage care acceptance. See Supporting Information: Appendix B for all interview questions. Data analysis The audio-recorded interviews were transcribed by research assistants, who were not involved in the data collection. All transcripts were subsequently checked for accuracy by SB. To support the analysis, the qualitative analysis software MAXQDA (VERBI Software, 2024) was used to assist in the coding process and identification of themes. An inductive, thematic content analysis was conducted, following the approach of Vears and Gillam (20), in which codes and categories are derived directly from the data. Two independent coders (SB: researcher, female; and RdV; research assistant, male) analysed the transcripts and identified preliminary codes. The coders had regular meetings to compare and refine the codes, discuss interpretations, and reach consensus on the broader coding categories and subcategories. In case of disagreement, a third person (MM; lead researcher, male) was involved to reach consensus. The data of the dyads and healthcare professionals were first analysed separately, but were also compared to explore differences and similarities between the participant groups. This allowed us to identify overlapping themes as well as group-specific perspectives. To explore contextual differences, each participant was assigned a colour indicating whether they lived or worked in a rural or city area. This supported our analysis of how geographical location may have shaped participants’ experiences and whether certain themes were more prominent in specific geographical contexts. Finally, all categories were reviewed and grouped into overarching themes to capture the most relevant findings, resulting in the key themes reported in this paper. Results Participant Characteristics Thirty-five dyads participated in the study. About half of the persons with dementia were female (18/35, 51%) and the average age was 77.7 years (SD = 7.0). Type of dementia varied: most people were diagnosed with Alzheimer’s disease (11/35, 31%) or Dementia Not Otherwise Specified (11/35, 31%), and received the diagnosis 2 to 4 years before enrolling in this study. The majority of the informal caregivers were female (21/35, 60%). The average age of the caregivers was 70.0 years (SD = 14.0). Most dyads were spouses (29/35, 83%), the rest were adult-children (6/35, 17%). An overview of the dyads’ characteristics can be found in Table 1. We included 47 healthcare professionals, where most worked as a dementia case manager (18/47, 38%). On average, healthcare professionals had 17 years of working experience in elderly care, which ranged from 1 to 41 years. The working area of the professionals covered rural as well as city areas throughout the Netherlands. Further characteristics can be found in Table 2. Table 1. Background characteristics of the persons with dementia and informal caregivers (N = 35) Characteristic Overall sample (N=35) Persons with dementia Informal caregivers Gender (female) 18 (51%) 21 (60%) Age (in y) 77.7(7.0) [60 - 92] 70.0(14.0) [23 – 87] Educational level Low education 5 (14%) 3 (9%) Mid education 14 (40%) 12 (34%) High education 16 (46%) 20 (57%) Relationship to PwD Spouse 29 (83%) Child 6 (17%) Cohabiting 27 (77%) Living area City 19 (54%) Rural 16 (46%) Type of dementia Alzheimer’s disease 11 (31%) Dementia Not Otherwise Specified 11 (31%) Vascular dementia 5 (14%) Lewy body dementia 2 (6%) Frontotemporal dementia 2 (6%) Mild Cognitive Impairment 2 (6%) Other 1 (3%) Unknown at time of assessment 1 (3%) Time since diagnosis 0 – 24 months 13 (37%) 24 – 48 months 14 (40%) 48+ months 7 (20%) No official diagnosis 1 (3%) Note: Data depicted as n (%) or mean(standard deviation) and [range]. Table 2. Background characteristics of the healthcare professionals (N = 47) Characteristic Overall sample (N=47) Female 41 (87.2%) Educational level Mid education (10 years) 3 (6%) High education (11 years or more) 44 (94%) Function in elderly care Dementia casemanager 18 (38%) District nurse 6 (13%) Dementia daycare centre coordinator 6 (13%) Dementia walk in centre coordinator 4 (8%) Advisor in informal care 5 (11%) General practitioner 3 (6%) Other 5 (11%) Work experience in elderly care (in y) 17 [1 – 42] Work area City 21 (45%) Rural 17 (36%) Both 9 (19%) Note: Data depicted as n (%) or mean [range]. Themes Data analysis resulted in 13 themes, which we could group into three main categories (see Table 3 for details): Early-stage needs of people with dementia and their informal caregivers : This category included themes related to the specific support deemed most helpful during this period, the best way that healthcare professionals could have provided assistance, and what particular type of support was valued most by the dyads. Facilitators for support: This category included all themes focussing on approaches currently implemented by healthcare professionals which were perceived as successful, with particular attention to possible distinctions between city and rural settings. Barriers for support: This category comprised themes that addressed the perceived challenges in finding help, and the type of support that the dyads did not find useful, as well as ineffective strategies used by healthcare professionals. Table 3. Overview of the themes divided over three main categories and their related sources. Category Themes Source Needs in the early stage More information on dementia and practical guidance D Navigating resources D Someone who listens D Availability of a case manager D Facilitators Collaborating with other organisations and maintaining short lines of communication H Community engagement and accessibility D + H Increasing visibility through education and awareness H A personal approach by being patient and building trust H Barriers Fear and reluctance in seeking help D + H Negative perceptions and stigma surrounding dementia D + H Lack of awareness and accessibility of services D + H Bureaucratic hurdles and complex procedures D + H One size fits all approaches do not work H Note: Themes were based on data of people with dementia and their informal caregiver, indicated by D for dyad, or data of healthcare professionals, indicated by H. 3.1 Early-stage needs of people with dementia and their informal caregivers We asked participants to reflect on their experiences during the early stages of dementia. Most informal caregivers reported an increasing need for assistance as the cognitive and behavioural symptoms of dementia progressed in the person for whom they cared. However, approximately half the caregivers indicated that at that time they did not seek professional support, as the caregivers believed they could manage the situation on their own. Practical support, such as assistance with daily activities (ADL), and domestic help, was often the first type of assistance informal caregivers were willing to accept. Theme 1: More information on dementia and practical guidance The majority of the caregivers reported a lack of knowledge and awareness of dementia at the time of the early stages, and emphasized the importance of receiving more information about dementia symptoms, the expected progression of the disease, and practical guidance for finding their way in the healthcare system. “[I needed] someone who understands what you are going through, and who is there for you. [I needed more] information about the disease, the possible course, how to communicate with my partner. Someone to guide us both, so that my partner also understands to some extent what it would mean for him and me.” (D_7/informal caregiver/62 years old/Female) “After the diagnosis, I was immediately assigned a case manager, and that support has been invaluable to me – especially the help with arranging everything I wouldn’t have thought of myself!” (D_35 /informal caregiver/67 years old/Female) Theme 2: Navigating resources More than half of the participants reported that they had experienced no difficulties in finding support. Many, especially those living in rural areas, described a well-coordinated healthcare network, where healthcare professionals in the area would collaborate to help the dyad with access to support. Additionally, some dyads reported having prior experience with dementia within their family or surroundings, which provided them with the necessary knowledge and confidence to navigate the healthcare system independently, without requiring additional external assistance. Those participants who did report challenges in accessing appropriate support around the time of diagnosis, most frequently reported a lack of knowledge regarding available services, which was often attributed to limited information provision by healthcare professionals. Many informal caregivers felt that healthcare professionals could have played a more proactive role in facilitating case management and other services, such as navigating available dementia daycare centres, and providing assistance with applications to access such resources. General practitioners and neurologists, in particular, were perceived as playing a passive role in facilitating access to support, with some being unaware of existing resources such as newly founded walk-in centres. “I found it strange that neither my general practitioner nor my dementia case manager was aware of the existence of the Odensehuis [walk-in centre for persons in early-stage dementia].” (D_1/person with dementia/77/M) Theme 3: Someone who listens Across the sample, case management and access to more information were identified as critical needs. Participants stressed the importance for healthcare professionals to establish trust through active listening and providing accessible and readily understandable information about the disease. Participants highlighted the importance of peer support and joint activities with other informal caregivers to reduce feelings of isolation and strengthen social connections. “Occasionally, I just needed a break—a chance to step away from the home situation, knowing that someone else could take over the responsibility and care for my husband.” (D_8 /informal caregiver/79/F) Theme 4: Availability of a case manager Several participants described difficulties in establishing contact with dementia case managers or care consultants, while others reported frequent changes in the case managers assigned to them. Such disruptions were perceived as confusing, particularly for the person with dementia, and contributed to a sense of discontinuity in care. 3.2 Facilitators for support Theme 1: Collaborating with other organizations and maintaining short lines of communication Healthcare professionals emphasized the importance of establishing strong communication with those responsible for referrals, such as general practitioners. Some organizations facilitate this by organizing information sessions not only for care recipients, but also for the healthcare professionals involved, helping to raise awareness of available support sources. Collaboration with domestic care or home help services is also crucial, as these professionals are often the first to interact with care recipients and can help identify dementia symptoms and potential issues early on. “Inform GPs that I will take on a case without this being extra work for the GP.” (P_15/coordinator walk in centre/city) “[…] maintaining short lines of communication is crucial, because then the general practice professional (“POH”) can call me immediately if something seems off [with the patient]. There is a strong sense of mutual involvement, and everyone has to set aside their organizational roles – we work together as one, for the people.” (P_22/informal care advisor/rural) Healthcare professionals also stressed the need to actively expand their professional network by attending community events like information sessions, workshops and working groups in elderly care. Maintaining a visible presence in the community ensures that the professionals are aware of available services, while also ensuring easier referral pathways. Professionals indicated that it is important to stay informed about local resources and to make regular efforts to engage with the community to make sure they are well known by other healthcare professionals as well as by informal caregivers. Theme 2: Community engagement and accessibility Healthcare professionals emphasized the importance of a visible presence within the community to facilitate access to support for people with dementia and their caregivers. Active participation in local initiatives, such as Alzheimer cafés or meetups, was recognized as an effective strategy for initiating early conversations about care options. The accessibility of the support service locations was also highlighted, underscoring the need for healthcare centres and walk-in facilities to be situated in easily identifiable and accessible areas, thereby reducing barriers for those seeking help. “Working from community centres allows for earlier detection through activities, making it easier to identify emerging issues. The threshold for seeking support is lower, because you’re already a familiar face [to them]. [...] Many people initially joined as volunteers at the community centre and later became clients or took on a dual role as both volunteer and client. Being visible as much as possible within the neighbourhood remains essential.” (P_43/social district support team/city) Continuous outreach efforts were deemed crucial, as healthcare professionals noted that people with dementia and caregivers typically seek support only when they feel ready. Consistent communication and visibility of resources increase the likelihood of timely engagement. However, flyers and websites appear to be less effective in reaching people. Healthcare professionals rely more on word-of-mouth referrals to encourage people with dementia and their families to seek support. “And you have to continuously work towards raising awareness – it is not enough to do it once or twice a year. You really have to keep it on people’s radar. In my experience, people eventually take notice but they often think information is not relevant to them at that moment. Then, a few months later, they become more receptive.” (P_42/case manager/both city and rural) Theme 3: Increasing visibility through education and awareness Healthcare professionals are actively working to raise awareness of dementia to make it more visible and, ultimately, more accepted. In both city and rural areas, professionals give presentations to a variety of groups, including local religious communities, migrant populations, bus and supermarket staff, schoolchildren, and pharmacists. These efforts aim to enhance awareness so that people can recognize dementia symptoms earlier and provide or seek help when needed. It is also crucial to inform older adults themselves about the various options of care available once a dementia diagnosis is made. By engaging diverse communities and spreading knowledge, healthcare professionals are working towards a greater understanding of dementia, encouraging earlier intervention and reducing stigma. “We try to raise as much awareness as possible to the fact that help [for someone dealing] with dementia exists. We give talks to a broad audience and give guest lectures at secondary schools. We also provide education to bus drivers and people in the neighbourhood, aiming to increase awareness in an accessible way for everyone in society. We contribute to creating dementia-friendly municipalities.” (P_42/case manager/both city and rural) Theme 4: A personal approach by being patient and building trust Healthcare professionals emphasized the importance of reducing barriers to accessing support by ensuring that individuals can reach out without unnecessary formalities. No official registration or referral should be required to initiate contact, allowing people to walk in and express their concerns without feeling pressured to take immediate steps. Providing a welcoming environment where people can freely express concerns, even before an official diagnosis, is key to facilitating early engagement. Engaging informally, such as over coffee or during a walk, was highlighted as an effective way to build trust and encourage early interactions. In addition, professionals emphasized the need for having patience and an empathetic approach. Instead of immediately offering solutions or advice, professionals should prioritize actively listening to the concerns of the dyads. This approach helps create a safe and non-judgemental environment, encouraging people to seek help when they are ready. “Being accessible – [that people are able to] just drop by for a cup of coffee. Freedom is also important: the freedom to participate without having an official diagnosis or feeling obligated to take certain steps. The fact that people can come to the Odensehuis together also helps. Some couples deliberately visit as a pair simply because they enjoy spending a pleasant morning together.” (P_23/coordinator dementia walk in centre/rural) 3.3 Barriers for support Theme 1: Fear and reluctance in seeking help Healthcare professionals indicated that informal caregivers must first come to terms with their role as caregivers before they can start seeking help. Many caregivers feel that it is their responsibility to manage the situation on their own, as part of their familial role, whether as spouse or as child. Especially in rural areas, healthcare professionals indicated that caregivers often do not wish to disclose their struggles, aiming to maintain a positive and capable image to the outside world. This unwillingness to accept the situation, meaning the recognition that they need help to prevent that the demands of caregiving might exceed their resources, typically results in postponing the diagnosis, which in turn delays the start of support services, leaving little time for the healthcare professional to build trust or properly address the needs and preferences of the dyads. “The partner does not see themselves as caregiver. Caregivers often feel they must handle [the situation] on their own. The boundaries [of caregiving] keep shifting, and they only realize there is a problem once they have already gone too far. By then, the situation has escalated.” (P_2/coordinator dementia daycare centre/city) Additionally, healthcare professionals observed that caregivers were often hesitant to seek help due to concerns that it may lead to immediate and significant changes in their life. Some caregivers worry that once help is sought, the person with dementia may no longer be able to live at home or be allowed to drive. Caregivers were often unaware of what services are available, but were also reluctant to ask for help because they fear that seeking assistance might lead to the involvement of numerous external agencies. Theme 2: Negative perceptions and stigma surrounding dementia Some people with dementia were aware that they might have dementia, but hesitated to disclose this due to concerns of societal reactions and fear of the stigma associated with the dementia label. People with dementia expressed an unwillingness in seeking out a diagnosis, as they often experience that people talk about a person with dementia rather than addressing them directly. This shift in social interactions can lead to a feeling of isolation and contributes to a loss of self-worth in the person with dementia, making people more afraid of seeking out a diagnosis. “When Piet and Jan go to the Odensehuis together, and Piet has dementia, people will ask Jan how Piet is doing. You are no longer included in the conversation, they stop seeing you as a person. But that is not true – you simply have dementia.” (P_12/coordinator dementia walk in centre/rural) As a result of the stigma, healthcare professionals noted lower attendance at events explicitly labelled with the terms “dementia” or “Alzheimer”, as it can be discouraging. This was also seen at the national initiative of Alzheimer cafés/Alzheimer meet ups, again reflecting the stigma and misunderstanding surrounding dementia. “In [our region], for example, support is provided in the community centre where we use the term “struggling brain” instead of “dementia”.” (P_43/social district support team/city) Theme 3: Lack of awareness and accessibility of services Healthcare professionals in both city and rural areas reported significant challenges in reaching people in need of support. A key issue is the lack of awareness regarding available services among persons with dementia and informal caregivers, which is partly due to inadequate information provision. Many older adults struggle to access information because it is primarily available online and the application to access support requires digital skills. This presents a barrier for a generation that did not grow up with modern technology. Additionally, the language used in the information provided is often too complex or acts as a deterrent. Language should be more accessible and simpler to ensure that the information reaches those who need it most. “Highly educated older adults – or their well-educated children – are often able to find support. However, those with lower educational backgrounds find it much more complicated. I believe this is the group that should be prioritized, and information should be provided in much simpler language.” (P_21/coordinator dementia daycare centre/city) Theme 4: Bureaucratic hurdles and complex procedures Healthcare professionals indicated that administrative burdens and the complexity of applying for services, such as the WMO (“Social Support Act”) or WLZ (“Long-Term Care Act”), deter people with dementia or caregivers from seeking support. Long waiting lists for case management, especially in city areas, further complicate access to timely support. Frequent policy changes within healthcare legislation and organisation and the shifting of responsibilities between professionals create unnecessary complexity for both care providers and recipients. These challenges are particularly pronounced in city areas, where dementia case managers reported high caseloads that limit their capacity for additional activities or personalized care. As a result, interactions with care recipients remain superficial. Moreover, if a dementia case manager is not immediately assigned to the dyad, the only contact with a healthcare professional after diagnosis is typically a brief check-in from the general practitioner twice a year. In contrast, healthcare professionals expressed a preference for a multidisciplinary approach that would provide continuous support from the initial signs of concern (“niet-pluis”) through to end-of-life care. In rural areas, collaboration between various organizations appears to be better established, whereas professionals in the city noted a fragmented system where different providers often operate in isolation, almost fostering competition between healthcare professionals rather than cooperation. “If you look at the Dementia Care Standard, support should already begin when there is a feeling that something is not right (“niet-pluis”). It is frustrating to witness the [personnel] shortages in the workplace, as we want to help everyone who needs it, but that it simply not possible due to overwhelming waiting lists.” (P_46/dementia case manager/city) Theme 5: One-Size-Fits-All approaches do not work Healthcare professionals, particularly in city areas, highlighted the limitations of standardized support programs. For example, a pre-designed approach at dementia daycare centres, often fails to meet the diverse needs of the dyads. In such cases, a mismatch between the needs of the dyad and healthcare professionals can hinder further access to support. The professionals also noted that if a dyad feels pressured, it tends to be counterproductive for accepting care or support. Therefore, professionals need to be flexible and creative in order to engage people, for example by starting with informal activities like a walk, gradually building up trust, and introducing support in a way that aligns with the dyad’s preference and readiness. However, this requires sufficient time and financial resources, which are often lacking. Additionally, care professionals noted that the current approach of providing care is focussed too much on what the person with dementia can no longer do, rather than exploring their remaining strengths and abilities. As a result, care recipients may feel compelled to present themselves as more capable than they actually are, further delaying access to the necessary support. “Providing something that is meant for everyone often means it works for no one – support should be tailored to individual needs and capabilities.” (P_32/informal care advisor/city) Discussion This study explored the needs of people with dementia and their informal caregivers in the early stages of dementia, and focused on how to reach this group more effectively as well as the practical challenges professionals face in providing support. By including participants from both rural and city areas, we also aimed to explore how geographical context influenced the accessibility of services and the ways in which support is sought and offered. Our findings indicate that in the early stages of dementia, informal caregivers often underestimated their need for professional support, despite facing increasing challenges in caring for their loved ones. Practical assistance, such as domestic help or support with daily tasks, often appeared to be the first form of support caregivers were willing to accept. This is consistent with earlier findings, where caregivers retrospectively indicated they would have benefited from someone to talk to and from earlier recognition of their problems (14, 21). This phenomenon has been labelled as the early stage needs paradox: caregivers in the early phase struggle to acknowledge their need for care due to difficulties in accepting changes and fear of stigma, as well as a preference to resolve matters independently. In our study, dyads emphasized the importance of timely, clear information on dementia, particularly regarding symptom progression, available services and navigating care. Healthcare professionals similarly noted that inadequate information provision and complicated procedures for accessing care hindered awareness of available services, especially among people with lower literacy or limited digital skills, which tend to be more prevalent in the current older population (22, 23). Earlier research has found that limited knowledge of and the complexity of the healthcare system can delay help-seeking (21). Consequently, we observed that support-seeking behaviour was frequently delayed due to a lack of tailored information. Dyads expressed a need for emotional support and a sense of being heard, and case management was identified as a critical need across our sample. This finding aligns with the latest report on the wishes and needs of people with dementia and their caregivers in the Netherlands (24), where case management was viewed as the most important type of professional dementia care. Healthcare professionals in our study emphasized the importance of strong collaboration with other healthcare organizations and maintaining clear lines of communication, particularly with general practitioners and community-based services. In both rural and city areas, participants described being visible in the community, through walk-in centres, local events, or informal networks, as crucial for lowering the threshold for contact. They also recommended educational efforts aimed at increasing awareness, such as presentations to diverse community groups, in order to improve recognition and acceptance of dementia. These findings suggest that professionals believe that pro-active, community-based strategies are key for engaging dyads in early-stage care. These perspectives align with previous research, which found that public education to reduce stigma and raise awareness has been found to be a key strategy in creating inclusive, dementia-friendly communities (25). Similarly, raising public awareness of dementia and fostering positive attitudes toward available interventions may reduce stigma and lower the threshold for seeking an early diagnosis (26) . Professionals in our study described low-threshold strategies that prioritize a personal approach based on patience and trust-building, such as informal conversations over coffee or during a walk, as essential for establishing trust. This approach mirrors caregivers’ preferences for informal, non-judgemental contact that does not immediately imply a transition to formal care. Embedding these facilitators into policy and care pathways may help bridge the gap between the current system and the needs of the dyad. While these strategies show promise for improving timely acceptance of dementia care, several barriers for early engagement were still identified. Both professionals and dyads described practical and organizational challenges that complicated early engagement in care and support. They emphasized that bureaucratic procedures, frequent policy changes, and long waiting lists deter people with dementia and their caregivers from seeking support. Dyads, especially in the city area, often struggled to navigate the healthcare system, where the absence of a familiar face or central point of contact led to delayed engagement (21). Furthermore, professionals in the city noted that high caseloads limited their ability to provide personalized or continuous support, sometimes resulting in brief and superficial interactions with dyads, as was also found in earlier research (27). Healthcare professionals also expressed concerns about one-size-fits-all approaches, which often failed to meet the specific needs of the dyad and could hinder their acceptance of support (28). Municipalities and healthcare organisations should consider how care infrastructures can better support professionals in building familiarity and trust in flexible and creative ways. Professionals stressed that such efforts require time, resources, and continuity: conditions not always met within the current care infrastructure (27). Despite a growing emphasis on early intervention, many dyads in our sample still postponed seeking support, not solely due to a lack of knowledge, but also due to personal values concerning role identity, independence, fear, and stigma. Previous research has identified emotional denial as an important barrier for seeking help in early-stage dementia (29). In the current sample, caregivers similarly expressed hesitation in seeking help, fearing it might result in immediate and substantial changes to their lives. However, earlier research has shown that when help is sought at a later stage, the person with dementia was less involved in decision-making concerning daily support (3). Healthcare professionals highlighted the impact of stigma and societal perceptions, echoing what caregivers and persons with dementia described as changes in social interactions and a fear of being labelled following a diagnosis (30). Consequently, a vicious cycle appears to emerge, where limited awareness of services and the stigma surrounding dementia contribute to fear of seeking help or even seeking out a diagnosis. Strengths and limitations Among the strengths of this study is the inclusion of multiple perspectives from informal caregivers, people with dementia, and healthcare professionals. This approach provides a comprehensive understanding of the needs and challenges in early-stage dementia from both care recipients and providers. The study looked at the everyday strategies professionals use to engage people with dementia and informal caregivers, as well as systemic barriers, offering practical insights for improving outreach and accessibility of care. Furthermore, the inclusion of participants from both city and rural areas strengthens the transferability of our findings. Comparing city and rural areas is a novel contribution to the literature, which showed how geographical context influences access to care, support-seeking behaviour, and availability of services. By focusing explicitly on the early stages of dementia, this study addressed a phase that is often underrepresented in dementia research, despite its significance for timely intervention and quality of life of the target group. Some limitations should be noted. There may have been a potential recall bias (31), as the dyads who agreed to participate might have been more proactive and had more engagement with healthcare professionals. This could have possibly led to an underrepresentation of those who were more isolated or harder to reach, potentially resulting in differences in reported needs or barriers. Additionally, reflecting retrospectively on the early stage may have been influenced by the current experiences and hindsight of the dyads, shaping how they remember their earlier experiences (14, 31). Lastly, we did not return the interview transcripts to the healthcare professionals for comments or feedback, in order to not further burden them during the COVID-19 pandemic, which means our interpretations of their answers may differ from their intended meanings. Scientific and clinical relevance of the study This study found that delays in seeking support during the early stages of dementia are not solely due to a lack of information, but arise from hesitation due to role identity, independence, and stigma, and from system barriers such as complex bureaucratic procedures and fragmented services. While informal caregivers may experience significant burden, they tend to underestimate their own support needs, favouring practical, low-threshold help like domestic help over interventions explicitly labelled as dementia care. This preference might be a promising entry point for early engagement that is perceived as less intrusive, and better collaboration with these services might lead to earlier symptom recognition. Both caregivers and healthcare professionals emphasized the need for timely emotional support and a consistent point of contact to build trust, but the current healthcare system might offer support in ways that do not fully align with the needs and preferences of people with dementia and their caregivers. Effective early-stage strategies might work better if support is reframed as a way to maintain agency and control during a challenging life phase, particularly for caregivers who feel responsible to handle the situation on their own. To facilitate this shift, it may be beneficial to adopt a more positive perspective of dementia, recognising the abilities of people with dementia in addition to their losses. Our findings confirm the relevance of several innovative forms of support for people with dementia and their caregivers that have been developed and positively evaluated over the past decades. In the Netherlands, these include Meeting Centres (32-34), Odensehuizen, the Social Approach to Dementia (35), DemenTalent (36), and individual or telephone-based coaching by, for example, case managers (28, 37, 38). These person-centred approaches aim to inform caregivers and provide practical, emotional, and social support. Moreover, the combined Meeting Centres Support Program has been shown to be more effective than traditional daycare centres in improving the well-being of the person with dementia and informal caregiver, and are now widely implemented in the Netherlands and disseminated in other parts of Europe and beyond. Such initiatives exemplify how community-based, low-threshold forms of support can effectively lower barriers to care, promote earlier engagement, and focus on the remaining strengths and preferences of people with dementia. By framing support as a way to continue engaging in meaningful activities and maintaining quality of life, we may therefore encourage people to seek support at an earlier stage. Future directions for research and practice In city areas, care structures tend to be fragmented, resulting in limited continuity and longer waiting times for case management. In contrast, dyads in rural areas frequently described a proactive and well-connected network of healthcare professionals that facilitated smoother access to services. These insights highlight the importance of local context in designing interventions and implementing these in dementia care pathways. Future research should explore whether interventions can be better aligned with their geographical infrastructure. It would also be beneficial to investigate how collaboration across disciplines and organizations could be enhanced to promote continuity and accessibility in early-stage dementia care. Additionally, outreach strategies tailored to underrepresented groups should be examined. For example, individuals with low literacy or limited digital access may struggle to obtain the support they need. Future research should assess whether more diverse populations, also including migrants, socially isolated caregivers, or people with dementia lacking a support network, can be reached more effectively. We must also be mindful of the role of language and labelling, as the stigma associated with a dementia diagnosis may influence uptake and engagement in the early phases of care. Conclusion This study explored how to effectively reach people with dementia and their informal caregivers during the early stages of the disease by looking at perceived needs, facilitators and barriers. Our findings indicate that a delay in seeking support is often related to limited awareness of services, emotional readiness, and stigma surrounding dementia. Practical access is frequently obstructed by bureaucratic procedures and fragmented care systems, especially in city settings. Dyads emphasized the need for timely information, emotional support, and the availability of a case manager, while professionals stressed the importance of informal, proactive engagement strategies. Regional variations in healthcare professional networks and outreach methods suggest that local context can significantly influence access to care. These insights may help the further development and dissemination of person-centred, context-sensitive approaches to support people in the early stages of dementia. Early-stage care acceptance may improve quality of life for the person with dementia, alleviate caregiver burden, and reduce long-term healthcare costs. Abbreviations ADL: Algemeen Dagelijkse Levensverrichtingen (translated: Activities of Daily Living); COVID-19: Coronavirus Disease 2019; D: Dyad; F: Female; GP: General Practitioner; H: Healthcare Professional; M: Male; MAXQDA: Max Weber Qualitative Data Analysis; METC: Medisch Ethische Toetsingscommissie (translated: Medical Ethics Review Committee); POH: Praktijkondersteuner Huisartsenzorg (translated: General Practice Professional); PwD: Person with Dementia; WLZ: Wet Langdurige Zorg (translated: Long-Term Care Act); WMO: Wet Maatschappelijke Ondersteuning (translated: Social Support Act); ZonMw: ZorgOnderzoek Nederland / Medische Wetenschappen (translated: Dutch Organization for Health Research and Care Innovation). Declarations Ethical approval and consent to participate This study was performed in accordance with the Declaration of Helsinki. Ethical approval for this study was obtained by the Medical Ethics Committee of the Amsterdam University Medical Centre (METC-2021.0295). All participants in this study have provided written informed consent. Consent for publication Not applicable. Availability of data The datasets generated and/or analysed during the current study will not be shared due to privacy reasons. Competing Interests The authors declare to have no conflict of interest related to the content of this study. Funding Sanne Balvert is supported by ZonMw, the Dutch Organization for Health Research and Care Innovation (grant number Eerder Erbij: 852002106). The sponsor had no role in the design, methods, analysis, or preparation of the paper. The content is solely the responsibility of the authors. Authors’ contributions SB and MM designed and acquired funding for the Eerder Erbij study, where SB was the principal investigator. SB and MM were responsible for the conceptualization of this study. SB collected the data, carried out the analysis and wrote the paper. RdV assisted with the analysis and with writing the paper. MM, RMD, and LV made substantial suggestions to earlier versions of the manuscript. All authors have read and approved this final manuscript. Acknowledgements We would like to thank all healthcare professionals involved for their time, valuable insights, and their help with participant recruitment. We are also grateful for the caregivers and persons with dementia who participated in this study, and for the research assistants for their invaluable help with transcribing the data. A special thank you for Hendrika de Vries for her help with data collection, and to Joziene Teeuwsen, Eveline Bersma, Mirjam Valk, and Sjef van Bommel for their contributions to the development of the interview guide. Clinical Trial Number Clinical trial number: not applicable. References World Health Organization. Global action plan on the public health response to dementia 2017–2025. World Health Organization; 2017. Report No.: 9241513489. Giezendanner S, Monsch AU, Kressig RW, Mueller Y, Streit S, Essig S, et al. General practitioners’ attitudes towards early diagnosis of dementia: a cross-sectional survey. BMC family practice. 2019;20:1-9. Moon H, Townsend AL, Whitlatch CJ, Dilworth-Anderson P. Quality of life for dementia caregiving dyads: Effects of incongruent perceptions of everyday care and values. The Gerontologist. 2017;57(4):657-66. Stephan A, Bieber A, Hopper L, Joyce R, Irving K, Zanetti O, et al. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC geriatrics. 2018;18:1-16. Parker M, Barlow S, Hoe J, Aitken L. Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia. International psychogeriatrics. 2020;32(5):611-34. Nasreddine Z, Garibotto V, Kyaga S, Padovani A. The early diagnosis of Alzheimer’s disease: A patient-centred conversation with the care team. Neurology and Therapy. 2023;12(1):11-23. Gaugler JE, Kane RL, Kane RA, Newcomer R. Early community-based service utilization and its effects on institutionalization in dementia caregiving. The Gerontologist. 2005;45(2):177-85. Bayly M, Morgan D, Elliot V, Kosteniuk J, Froehlich Chow A, Peacock S, et al. Does early-stage intervention improve caregiver well-being or their ability to provide care to persons with mild dementia or mild cognitive impairment? A systematic review and meta-analysis. Psychology and Aging. 2021;36(7):834. Van Vliet D, de Vugt ME, Bakker C, Koopmans RT, Pijnenburg YA, Vernooij-Dassen MJ, et al. Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics. 2011;23(9):1393-404. Woods B, Arosio F, Diaz A, Gove D, Holmerová I, Kinnaird L, et al. Timely diagnosis of dementia? Family carers' experiences in 5 European countries. International Journal of Geriatric Psychiatry. 2019;34(1):114-21. Ng CK, Leung DK, Cai X, Wong GH. Perceived help-seeking difficulty, barriers, delay, and burden in carers of people with suspected dementia. International Journal of Environmental Research and Public Health. 2021;18(6):2956. Connolly A, Gaehl E, Martin H, Morris J, Purandare N. Underdiagnosis of dementia in primary care: variations in the observed prevalence and comparisons to the expected prevalence. Aging & mental health. 2011;15(8):978-84. Van Der Roest HG, Meiland FJ, Maroccini R, Comijs HC, Jonker C, Dröes R-M. Subjective needs of people with dementia: a review of the literature. International Psychogeriatrics. 2007;19(3):559-92. Boots LM, Wolfs CA, Verhey FR, Kempen GI, de Vugt ME. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. International psychogeriatrics. 2015;27(6):927-36. Wolfs CA, de Vugt ME, Verkaaik M, Verkade PJ, Verhey FR. Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments. International journal of geriatric psychiatry. 2010;25(10):1006-12. Van der Roest HG, Meiland FJ, Comijs HC, Derksen E, Jansen AP, Van Hout HP, et al. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International psychogeriatrics. 2009;21(5):949-65. Giebel C, Hanna K, Watson J, Faulkner T, O’Connell L, Smith S, et al. A systematic review on inequalities in accessing and using community-based social care in dementia. International Psychogeriatrics. 2024;36(7):540-63. Wang G, Marradi C, Albayrak A, van der Cammen TJ. Co-designing with people with dementia: A scoping review of involving people with dementia in design research. Maturitas. 2019;127:55-63. Balvert S, Milders M, Bosmans J, Heymans M, van Bommel S, Dröes R-M, et al. The MOMANT study, a caregiver support programme with activities at home for people with dementia: a study protocol of a randomised controlled trial. BMC geriatrics. 2022;22(1):295. Vears DF, Gillam L. Inductive content analysis: A guide for beginning qualitative researchers. Focus on Health Professional Education: A Multi-Professional Journal. 2022;23(1):111-27. Gregg JE, Simpson J, Nilforooshan R, Perez-Algorta G. What is the relationship between people with dementia and their caregiver’s illness perceptions post-diagnosis and the impact on help-seeking behaviour? A systematic review. Dementia. 2021;20(7):2597-617. Vercruyssen A, Schirmer W, Geerts N, Mortelmans D, editors. How “basic” is basic digital literacy for older adults? Insights from digital skills instructors. Frontiers in Education; 2023: Frontiers Media SA. Bialik K, Fry R. Millennial life: How young adulthood today compares with prior generations. Pew Research Center. 2019;14. van der Heide I, de Graaff M, van den Buuse S, Rikkers-Pluijlaar I, Bos N. Dementiemonitor 2024. 2024. Hung L, Hudson A, Gregorio M, Jackson L, Mann J, Horne N, et al. Creating dementia-friendly communities for social inclusion: A scoping review. Gerontology and Geriatric Medicine. 2021;7:23337214211013596. De Vugt ME, Verhey FR. The impact of early dementia diagnosis and intervention on informal caregivers. Progress in neurobiology. 2013;110:54-62. Reinhoudt‐den Boer L, van Wijngaarden J, Huijsman R. Coproducing care and support delivery in healthcare triads: Dutch case managers for people with dementia at home using strategies to handle conflict in the healthcare triad. Health & Social Care in the Community. 2022;30(5):e1560-e9. Van Mierlo L, Meiland F, Van Hout H, Dröes R. Toward an evidence-based implementation model and checklist for personalized dementia care in the community. International Psychogeriatrics. 2016;28(5):801-13. Jeyagurunathan A, Yuan Q, Samari E, Zhang Y, Goveas R, Ng LL, et al. Facilitators and barriers of help-seeking for persons with dementia in Asia—findings from a qualitative study of informal caregivers. Frontiers in Public Health. 2024;12:1396056. Herrmann LK, Welter E, Leverenz J, Lerner AJ, Udelson N, Kanetsky C, et al. A systematic review of dementia-related stigma research: Can we move the stigma dial? The American Journal of Geriatric Psychiatry. 2018;26(3):316-31. Hunger M, Schwarzkopf L, Heier M, Peters A, Holle R, Group KS. Official statistics and claims data records indicate non-response and recall bias within survey-based estimates of health care utilization in the older population. BMC health services research. 2013;13:1-11. Dröes R-M, Breebaart E, Meiland F, Van Tilburg W, Mellenbergh G. Effect of Meeting Centres Support Program on feelings of competence of family carers and delay of institutionalization of people with dementia. Aging & mental health. 2004;8(3):201-11. Dröes RM, Meiland F, Schmitz M, Van Tilburg W. Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi‐centre implementation study. International journal of geriatric psychiatry. 2004;19(7):673-84. Brooker D, Evans S, Evans S, Bray J, Saibene FL, Scorolli C, et al. Evaluation of the implementation of the Meeting Centres Support Program in Italy, Poland, and the UK; exploration of the effects on people with dementia. International Journal of Geriatric Psychiatry. 2018;33(7):883-92. van Wijngaarden E, Alma M, The A-M. ‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective. PLoS One. 2019;14(4):e0214724. van Rijn A, Meiland F, Dröes R-M. Linking DemenTalent to Meeting Centers for people with dementia and their caregivers: a process analysis into facilitators and barriers in 12 Dutch Meeting Centers. International Psychogeriatrics. 2019;31(10):1433-45. Boots LM, de Vugt ME, Kempen GI, Verhey FR. Effectiveness of a blended care self-management program for caregivers of people with early-stage dementia (partner in balance): randomized controlled trial. Journal of medical Internet research. 2018;20(7):e10017. Dröes R-M, van Rijn A, Rus E, Dacier S, Meiland F. Utilization, effect, and benefit of the individualized meeting centers support program for people with dementia and caregivers. Clinical interventions in aging. 2019:1527-53. Additional Declarations No competing interests reported. Supplementary Files BalvertetalFacilitatorsandBarriersSupplementaryFileAppendixA.doc BalvertetalFacilitatorsandBarriersSupplementaryFileAppendixB.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6863817","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":495082174,"identity":"ee6ecfa0-e4f6-4cc5-9814-f30eb06358d2","order_by":0,"name":"Sanne C.E. Balvert","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA0klEQVRIie2RsQrCMBRFbwnEJTgHVPoLka4Vv6UU+g0dHCJCXARXB/EzOjcEOhX8gQ4VwVnp4uBg6+TUxs0hZ7gPHu/AhQc4HP9LjvFnpl0QaafQzyi79H5RtLJQfElq3FH5lMdF8ziZSE7W/YrIqfAOuM0VT+KDzlplqgcUMBAG4ylWBtBZEkkeDRVrlRfMUrFzA320UJC3CmAiNdoRaBkOK8JQoXfiFquRClAWYaAGi203l/qZVos9IVekKz7b8zjvL0a6p4ivBe2/dzgcDocNb94RQ1QdUxmvAAAAAElFTkSuQmCC","orcid":"","institution":"Vrije Universiteit Amsterdam","correspondingAuthor":true,"prefix":"","firstName":"Sanne","middleName":"C.E.","lastName":"Balvert","suffix":""},{"id":495082175,"identity":"43def57f-3f9b-4a5e-9422-f272cce852fd","order_by":1,"name":"Romano D. Vries","email":"","orcid":"","institution":"Vrije Universiteit Amsterdam","correspondingAuthor":false,"prefix":"","firstName":"Romano","middleName":"D.","lastName":"Vries","suffix":""},{"id":495082177,"identity":"975068fb-f1ec-44db-a827-30a99ca9ba18","order_by":2,"name":"Rose Marie Dröes","email":"","orcid":"","institution":"Amsterdam UMC Location VUmc","correspondingAuthor":false,"prefix":"","firstName":"Rose","middleName":"Marie","lastName":"Dröes","suffix":""},{"id":495082178,"identity":"361d4b29-e8d2-402d-93cf-f6b538fa86a0","order_by":3,"name":"Leonie N. C. Visser","email":"","orcid":"","institution":"Utrecht University","correspondingAuthor":false,"prefix":"","firstName":"Leonie","middleName":"N. C.","lastName":"Visser","suffix":""},{"id":495082179,"identity":"140b203c-be58-415a-9e25-80913b9b98aa","order_by":4,"name":"Maarten V. Milders","email":"","orcid":"","institution":"Vrije Universiteit Amsterdam","correspondingAuthor":false,"prefix":"","firstName":"Maarten","middleName":"V.","lastName":"Milders","suffix":""}],"badges":[],"createdAt":"2025-06-10 13:53:37","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6863817/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6863817/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":108082510,"identity":"09ef7a28-746e-4ff5-a923-ddc93fe9ae4f","added_by":"auto","created_at":"2026-04-29 07:57:01","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":393189,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6863817/v1/b84b39b1-d6e3-400e-b81b-08050026c17f.pdf"},{"id":91698122,"identity":"c61d022b-12d3-4344-9754-cf7e50e34b93","added_by":"auto","created_at":"2025-09-19 09:57:48","extension":"doc","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":79360,"visible":true,"origin":"","legend":"","description":"","filename":"BalvertetalFacilitatorsandBarriersSupplementaryFileAppendixA.doc","url":"https://assets-eu.researchsquare.com/files/rs-6863817/v1/878a3517c11a3009a988b402.doc"},{"id":91697134,"identity":"0cf0cc07-0f11-4b77-a569-83db3c890025","added_by":"auto","created_at":"2025-09-19 09:49:48","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":29782,"visible":true,"origin":"","legend":"","description":"","filename":"BalvertetalFacilitatorsandBarriersSupplementaryFileAppendixB.docx","url":"https://assets-eu.researchsquare.com/files/rs-6863817/v1/b8f7cbf6223a7482bc4cd0b1.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Facilitators and Barriers to Early-Stage Dementia Care: A Qualitative Study on the Perspectives of Persons with Dementia, Informal Caregivers, and Healthcare Professionals","fulltext":[{"header":"Introduction","content":"\u003cp\u003eAs the global population ages, the prevalence of dementia is rising at an alarming rate. The number of people with dementia is projected to nearly triple to 152\u0026nbsp;million by 2050 (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). An early diagnosis of dementia enables timely access to information, support, services, and appropriate care. It provides clarity for persons with dementia and their families, and more importantly, allows persons with dementia to participate in informed decision-making while they still can (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). People with dementia often express a desire to preserve their autonomy and remain independent and in control for as long as possible (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Receiving a timely diagnosis gives persons with dementia and their families the opportunity to plan for the future, seek legal and financial advice, and to receive timely support (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). An earlier diagnosis can also enable the person with dementia to adopt healthier lifestyle changes, potentially delaying symptom progression (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Timely use of community-services and support can also help delay the institutionalization of the person with dementia (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Early recognition of dementia thus offers several advantages that can improve the quality of life of persons with dementia, as well as of their informal caregivers and relatives (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Previous research has shown that support provided at an early stage was more effective in improving well-being of the caregiver than support offered at a later stage of dementia (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Moreover, the timing of when people with dementia and their informal caregivers accept professional support and care is crucial, as it can influence the trajectory of the caregiving situation (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Early-stage intervention may better equip all parties involved to cope with dementia progression and adapt to changes in family dynamics at home, as persons with dementia at this stage can still fully contribute and express their needs and preferences (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Healthcare professionals recognize the importance of timely support in dementia care and employ various strategies to facilitate the acceptance of care (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Nevertheless, these efforts are not always successful, and professionals often express concerns that support is provided too late to be truly effective.\u003c/p\u003e\u003cp\u003eThere is often a prolonged period between recognizing the first symptoms and receiving a formal diagnosis, which can range from several months to several years, also known as the diagnostic delay (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Several factors contribute to this delay in diagnosis, including individuals being reluctant to seek help due to barriers such as stigma, denial or fear (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), insufficient knowledge about dementia, and a lack of awareness of available services (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). There is still a lack of knowledge about how to overcome these barriers effectively. Early symptoms can also frequently be mistaken for normal aging, which can lead to misinterpretation by general practitioners, resulting in a high rate of underdiagnosis in primary care (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Research has shown that while people with dementia frequently report needing help in coming to terms with their situation or finding strategies to cope with their difficulties, they often do not have a clear idea of how these needs should be met, which may further complicate timely help-seeking and support (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Consequently, the pre-diagnostic and help-seeking period in dementia can be a long and challenging experience. Even after receiving a diagnosis, informal caregivers may postpone or avoid the use of formal care, because they do not feel the support is necessary, even when experiencing significant burden (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Additionally, informal caregivers may refrain from seeking help because they believe that caring for a family member with dementia is their personal or family responsibility (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). The non-utilisation of services is further influenced by the reluctance of the person with dementia to accept care, fear of losing autonomy, and lack of awareness of the existing services available to them (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Furthermore, people with dementia and their caregivers residing in more disadvantaged regions often have less awareness of, and fewer options for, available support (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). As a result, by the time a person with dementia or their informal caregiver seeks or receives formal care, it is often too late for optimal support (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). By that time, the difficulties at home may already be so severe that community-based care has limited effectiveness, and admission to residential care may soon follow (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eTo improve the timing and acceptance of care, it is essential to better understand the needs of people in the early stages of dementia and the barriers that prevent them from seeking or accepting help. Developing strategies to facilitate earlier diagnosis and intervention is crucial for improving symptom management, decreasing caregiver burden, reducing costs, and delaying institutional care. However, active involvement of the person with dementia in designing early-stage interventions is limited, despite its potential to enhance acceptance and uptake (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). For this reason, we explored the perspectives of all stakeholders involved: people with dementia, their informal caregivers, and healthcare professionals. The goals of this study were to explore the experiences of community-dwelling persons with dementia and their informal caregivers in the early stages of the disease to examine their needs regarding early-stage support, and what hindered or enabled their access to care. We also examined how healthcare professionals try to reach people with dementia and their caregivers, by collecting information on both successful and unsuccessful strategies employed by healthcare and welfare organizations to facilitate timely use of available services. By addressing these goals, this study sought to provide valuable insights that could contribute to the improvement of early-stage dementia care, and ultimately enhance the quality of life for those affected and their informal caregivers, while reducing the long-term burden on healthcare systems.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eDesign\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis qualitative study was part of a larger research project called “Eerder Erbij” (ZonMw grant number: 852002106).\u0026nbsp;The current study used a cross-sectional design and collected information on: (i) the needs of community-dwelling persons with dementia and their informal caregivers in the early stages of dementia; (ii) the facilitators and barriers for support; and (iii) strategies used by healthcare professionals to improve the acceptance of early-stage care. Open-ended questionnaires were used to assess the perspectives of the person with dementia and their informal caregiver, hereinafter referred to as dyad, and semi-structured interviews were held to examine the perspectives of healthcare professionals.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe “Eerder Erbij” study was conducted according to the principles of Helsinki and all participants gave informed consent. No interview was conducted before obtaining written informed consent. The study was declared by the Medical Ethics Committee of the Amsterdam University Medical Centre (METC-2021.0295) as research not subjected to the Medical Research Involving Human Subjects Act.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipants and Procedure\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll participants were recruited between July 2021 and June 2022, which coincided with the global pandemic caused by COVID-19. Due to the restrictions on physical and social contact, data were collected either through postal questionnaires or through semi-structured interviews conducted online.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePeople with dementia and informal caregivers\u003c/p\u003e\n\u003cp\u003eThe persons with dementia and caregivers were recruited through elderly care organisations, such as dementia daycare centres and memory clinics. They were approached by healthcare professionals, who informed potential participants of the study and provided more information on what participation entailed. When interested, dyads received written information explaining the study and an informed consent form. Upon receival of a signed informed consent form, a questionnaire was sent. Due to COVID-19 restrictions at the time of data collection, participants were asked to complete the questionnaires at home. We informed them that they could contact the research team by phone if they had any questions or required assistance. To map out the wishes and needs of the persons with dementia and their caregivers as broadly as possible, the aim was to recruit around 36 dyads.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo be eligible for the study, the person with dementia had to live at home, and had to have a dementia diagnosis or experience severe cognitive impairment suggesting dementia and had to be able to give informed consent. The informal caregiver could be the partner, a child or someone else close to the person with dementia. If the caregiver did not live with the person with dementia, they had to care for the person with dementia at least three times a week without receiving payment. Participants were recruited as dyads and were asked to fill out the questionnaire together.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHealthcare professionals\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals were recruited through regional dementia networks and a network of daycare- and healthcare organizations that had been involved in a previous study (19) and through snowball sampling. After giving informed consent, each professional was invited to participate in an interview. The interviews were conducted online by two members of the research team (SB and HdV; researcher and research assistant, both female). All interviews were audio-recorded, and lasted approximately one hour on average. If healthcare professionals were unable to participate in an interview due to time- or other constraints, they were asked to complete a survey containing the same questions as the interview. The aim was to approach 30 healthcare professionals from different occupational backgrounds in order to capture a broad range of perspectives regarding support in early-stage dementia.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eInclusion criteria for the healthcare professionals were that they had to work for an elderly care organization, e.g., dementia daycare centre, district nurse or domestic care, because they had to have experience in working with community-dwelling persons with dementia and informal caregivers. Healthcare professionals whose only experience with persons with dementia was in residential care were not included in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMaterials\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSurveys for people with dementia and informal caregivers\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDyads completed a structured survey including sociodemographic characteristics, such as age, gender, educational level and relationship to each other. The person with dementia provided additional information regarding their diagnosis, while the informal caregiver was asked about other responsibilities in addition to caregiving (e.g., work or family obligations). The survey further addressed needs for support when symptoms first emerged and at the time of diagnosis, including the type of help that would have been useful in the early stages, preferred timing of support throughout the course of the disease, and the type of services actually used at that time. Participants were also asked how healthcare professionals could have assisted them in the early stages, and whether they encountered difficulties in finding help during that time. All survey questions are available in Supporting Information: Appendix A.\u003c/p\u003e\n\u003cp\u003eSemi-structured interviews with healthcare professionals\u003c/p\u003e\n\u003cp\u003eHealthcare professionals were interviewed using a semi-structured guide. Initial questions addressed socio-demographic and work-related characteristics, including the region where they worked, their professional role, and years of experience in elderly care. Subsequently, questions focused on strategies to reach persons with dementia and their informal caregivers at an early stage, collaborations with other organizations to support these efforts, and ways to identify care needs upon initial contact. Professionals were also asked to reflect on barriers and facilitators to early engagement, as well as to evaluate which strategies were considered successful or unsuccessful in promoting early-stage care acceptance. See Supporting Information: Appendix B for all interview questions.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe audio-recorded interviews were transcribed by research assistants, who were not involved in the data collection. All transcripts were subsequently checked for accuracy by SB. To support the analysis, the qualitative analysis software MAXQDA (VERBI Software, 2024) was used to assist in the coding process and identification of themes. An inductive, thematic content analysis was conducted, following the approach of Vears and Gillam (20), in which codes and categories are derived directly from the data. Two independent coders (SB: researcher, female; and RdV; research assistant, male) analysed the transcripts and identified preliminary codes.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe coders had regular meetings to compare and refine the codes, discuss interpretations, and reach consensus on the broader coding categories and subcategories. In case of disagreement, a third person (MM; lead researcher, male) was involved to reach consensus. The data of the dyads and healthcare professionals were first analysed separately, but were also compared to explore differences and similarities between the participant groups. This allowed us to identify overlapping themes as well as group-specific perspectives. To explore contextual differences, each participant was assigned a colour indicating whether they lived or worked in a rural or city area. This supported our analysis of how geographical location may have shaped participants’ experiences and whether certain themes were more prominent in specific geographical contexts. Finally, all categories were reviewed and grouped into overarching themes to capture the most relevant findings, resulting in the key themes reported in this paper.\u0026nbsp;\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eParticipant Characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThirty-five dyads participated in the study. About half of the persons with dementia were female (18/35, 51%) and the average age was 77.7 years (SD = 7.0). Type of dementia varied: most people were diagnosed with Alzheimer\u0026rsquo;s disease (11/35, 31%) or Dementia Not Otherwise Specified (11/35, 31%), and received the diagnosis 2 to 4 years before enrolling in this study. The majority of the informal caregivers were female (21/35, 60%). The average age of the caregivers was 70.0 years (SD = 14.0). Most dyads were spouses (29/35, 83%), the rest were adult-children (6/35, 17%). An overview of the dyads\u0026rsquo; characteristics can be found in Table 1.\u003c/p\u003e\n\u003cp\u003eWe included 47 healthcare professionals, where most worked as a dementia case manager (18/47, 38%). On average, healthcare professionals had 17 years of working experience in elderly care, which ranged from 1 to 41 years. The working area of the professionals covered rural as well as city areas throughout the Netherlands. Further characteristics can be found in Table 2.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1.\u0026nbsp;\u003c/strong\u003e\u003cem\u003eBackground characteristics of the persons with dementia and informal caregivers (N = 35)\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"81%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCharacteristic\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eOverall sample (N=35)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePersons with dementia\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInformal caregivers\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender (female)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e18 (51%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e21 (60%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge (in y)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e77.7(7.0)\u003c/p\u003e\n \u003cp\u003e[60 - 92]\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e70.0(14.0)\u003c/p\u003e\n \u003cp\u003e[23 \u0026ndash; 87]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducational level\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eLow education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e5 (14%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e3 (9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eMid education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e14 (40%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e12 (34%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eHigh education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e16 (46%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e20 (57%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelationship to PwD\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eSpouse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e29 (83%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eChild\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e6 (17%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCohabiting\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e27 (77%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLiving area\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eCity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e19 (54%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eRural\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e16 (46%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eType of dementia\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eAlzheimer\u0026rsquo;s disease\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e11 (31%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eDementia Not Otherwise Specified\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e11 (31%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eVascular dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e5 (14%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eLewy body dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e2 (6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eFrontotemporal dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e2 (6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eMild Cognitive Impairment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e2 (6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e1 (3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eUnknown at time of assessment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e1 (3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTime since diagnosis\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e0 \u0026ndash; 24 months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e13 (37%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e24 \u0026ndash; 48 months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e14 (40%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003e48+ months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e7 (20%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 44px;\"\u003e\n \u003cp\u003eNo official diagnosis\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 30px;\"\u003e\n \u003cp\u003e1 (3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 25px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eNote:\u003c/em\u003e Data depicted as n (%) or mean(standard deviation) and [range].\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"68%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 2.\u0026nbsp;\u003c/strong\u003e\u003cem\u003eBackground characteristics of the healthcare professionals (N = 47)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCharacteristic\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eOverall sample (N=47)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFemale\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e41 (87.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducational level\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eMid education (10 years)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e3 (6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eHigh education (11 years or more)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e44 (94%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFunction in elderly care\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eDementia casemanager\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e18 (38%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eDistrict nurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e6 (13%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eDementia daycare centre coordinator\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e6 (13%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eDementia walk in centre coordinator\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e4 (8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eAdvisor in informal care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e5 (11%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eGeneral practitioner\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e3 (6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e5 (11%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eWork experience in elderly care (in y)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e17 [1 \u0026ndash; 42]\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eWork area\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eCity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e21 (45%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eRural\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e17 (36%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003eBoth\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43px;\"\u003e\n \u003cp\u003e9 (19%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eNote:\u003c/em\u003e Data depicted as n (%) or mean [range].\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThemes\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData analysis resulted in 13 themes, which we could group into three main categories (see Table 3 for details):\u003c/p\u003e\n\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003e\u003cstrong\u003eEarly-stage needs of people with dementia and their informal caregivers\u003c/strong\u003e: This category included themes related to the specific support deemed most helpful during this period, the best way that healthcare professionals could have provided assistance, and what particular type of support was valued most by the dyads.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eFacilitators for support:\u0026nbsp;\u003c/strong\u003eThis category included all themes focussing on approaches currently implemented by healthcare professionals which were perceived as successful, with particular attention to possible distinctions between city and rural settings.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eBarriers for support:\u003c/strong\u003e This category comprised themes that addressed the perceived challenges in finding help, and the type of support that the dyads did not find useful, as well as ineffective strategies used by healthcare professionals.\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3.\u003c/strong\u003e \u003cem\u003eOverview of the themes divided over three main categories and their related sources.\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"663\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 141px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCategory\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eThemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSource\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 141px;\"\u003e\n \u003cp\u003eNeeds in the early stage\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eMore information on dementia and practical guidance\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eNavigating resources\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eSomeone who listens\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eAvailability of a case manager\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 141px;\"\u003e\n \u003cp\u003eFacilitators\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eCollaborating with other organisations and maintaining short lines of communication\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eCommunity engagement and accessibility\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD + H\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eIncreasing visibility through education and awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eA personal approach by being patient and building trust\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 141px;\"\u003e\n \u003cp\u003eBarriers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eFear and reluctance in seeking help\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD + H\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eNegative perceptions and stigma surrounding dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD + H\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eLack of awareness and accessibility of services\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD + H\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eBureaucratic hurdles and complex procedures\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eD + H\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 141px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 454px;\"\u003e\n \u003cp\u003eOne size fits all approaches do not work\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 68px;\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eNote:\u003c/em\u003e Themes were based on data of people with dementia and their informal caregiver, indicated by D for dyad, or data of healthcare professionals, indicated by H.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.1 Early-stage needs of people with dementia and their informal caregivers\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe asked participants to reflect on their experiences during the early stages of dementia. Most informal caregivers reported an increasing need for assistance as the cognitive and behavioural symptoms of dementia progressed in the person for whom they cared. However, approximately half the caregivers indicated that at that time they did not seek professional support, as the caregivers believed they could manage the situation on their own. Practical support, such as assistance with daily activities (ADL), and domestic help, was often the first type of assistance informal caregivers were willing to accept.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 1: More information on dementia and practical guidance\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe majority of the caregivers reported a lack of knowledge and awareness of dementia at the time of the early stages, and emphasized the importance of receiving more information about dementia symptoms, the expected progression of the disease, and practical guidance for finding their way in the healthcare system.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;[I needed] someone who understands what you are going through, and who is there for you. [I needed more] information about the disease, the possible course, how to communicate with my partner. Someone to guide us both, so that my partner also understands to some extent what it would mean for him and me.\u0026rdquo; (D_7/informal caregiver/62 years old/Female)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;After the diagnosis, I was immediately assigned a case manager, and that support has been invaluable to me \u0026ndash; especially the help with arranging everything I wouldn\u0026rsquo;t have thought of myself!\u0026rdquo; (D_35 /informal caregiver/67 years old/Female)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 2: Navigating resources\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMore than half of the participants reported that they had experienced no difficulties in finding support. Many, especially those living in rural areas, described a well-coordinated healthcare network, where healthcare professionals in the area would collaborate to help the dyad with access to support. Additionally, some dyads reported having prior experience with dementia within their family or surroundings, which provided them with the necessary knowledge and confidence to navigate the healthcare system independently, without requiring additional external assistance.\u003c/p\u003e\n\u003cp\u003eThose participants who did report challenges in accessing appropriate support around the time of diagnosis, most frequently reported a lack of knowledge regarding available services, which was often attributed to limited information provision by healthcare professionals. Many informal caregivers felt that healthcare professionals could have played a more proactive role in facilitating case management and other services, such as navigating available dementia daycare centres, and providing assistance with applications to access such resources. General practitioners and neurologists, in particular, were perceived as playing a passive role in facilitating access to support, with some being unaware of existing resources such as newly founded walk-in centres.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I found it strange that neither my general practitioner nor my dementia case manager was aware of the existence of the Odensehuis [walk-in centre for persons in early-stage dementia].\u0026rdquo; (D_1/person with dementia/77/M)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 3: Someone who listens\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAcross the sample, case management and access to more information were identified as critical needs. Participants stressed the importance for healthcare professionals to establish trust through active listening and providing accessible and readily understandable information about the disease. Participants highlighted the importance of peer support and joint activities with other informal caregivers to reduce feelings of isolation and strengthen social connections.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Occasionally, I just needed a break\u0026mdash;a chance to step away from the home situation, knowing that someone else could take over the responsibility and care for my husband.\u0026rdquo; (D_8 /informal caregiver/79/F)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 4: Availability of a case manager\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSeveral participants described difficulties in establishing contact with dementia case managers or care consultants, while others reported frequent changes in the case managers assigned to them. Such disruptions were perceived as confusing, particularly for the person with dementia, and contributed to a sense of discontinuity in care.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.2 Facilitators for support\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 1: Collaborating with other organizations and maintaining short lines of communication\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals emphasized the importance of establishing strong communication with those responsible for referrals, such as general practitioners. Some organizations facilitate this by organizing information sessions not only for care recipients, but also for the healthcare professionals involved, helping to raise awareness of available support sources. Collaboration with domestic care or home help services is also crucial, as these professionals are often the first to interact with care recipients and can help identify dementia symptoms and potential issues early on.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Inform GPs that I will take on a case without this being extra work for the GP.\u0026rdquo; (P_15/coordinator walk in centre/city)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;[\u0026hellip;] maintaining short lines of communication is crucial, because then the general practice professional (\u0026ldquo;POH\u0026rdquo;) can call me immediately if something seems off [with the patient]. There is a strong sense of mutual involvement, and everyone has to set aside their organizational roles \u0026ndash; we work together as one, for the people.\u0026rdquo; (P_22/informal care advisor/rural)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals also stressed the need to actively expand their professional network by attending community events like information sessions, workshops and working groups in elderly care. Maintaining a visible presence in the community ensures that the professionals are aware of available services, while also ensuring easier referral pathways. Professionals indicated that it is important to stay informed about local resources and to make regular efforts to engage with the community to make sure they are well known by other healthcare professionals as well as by informal caregivers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 2: Community engagement and accessibility\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals emphasized the importance of a visible presence within the community to facilitate access to support for people with dementia and their caregivers. Active participation in local initiatives, such as Alzheimer caf\u0026eacute;s or meetups, was recognized as an effective strategy for initiating early conversations about care options. The accessibility of the support service locations was also highlighted, underscoring the need for healthcare centres and walk-in facilities to be situated in easily identifiable and accessible areas, thereby reducing barriers for those seeking help.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Working from community centres allows for earlier detection through activities, making it easier to identify emerging issues. The threshold for seeking support is lower, because you\u0026rsquo;re already a familiar face [to them]. [...] Many people initially joined as volunteers at the community centre and later became clients or took on a dual role as both volunteer and client. Being visible as much as possible within the neighbourhood remains essential.\u0026rdquo; (P_43/social district support team/city)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eContinuous outreach efforts were deemed crucial, as healthcare professionals noted that people with dementia and caregivers typically seek support only when they feel ready. Consistent communication and visibility of resources increase the likelihood of timely engagement. However, flyers and websites appear to be less effective in reaching people. Healthcare professionals rely more on word-of-mouth referrals to encourage people with dementia and their families to seek support.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;And you have to continuously work towards raising awareness \u0026ndash; it is not enough to do it once or twice a year. You really have to keep it on people\u0026rsquo;s radar. In my experience, people eventually take notice but they often think information is not relevant to them at that moment. Then, a few months later, they become more receptive.\u0026rdquo; (P_42/case manager/both city and rural)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 3: Increasing visibility through education and awareness\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals are actively working to raise awareness of dementia to make it more visible and, ultimately, more accepted. In both city and rural areas, professionals give presentations to a variety of groups, including local religious communities, migrant populations, bus and supermarket staff, schoolchildren, and pharmacists. These efforts aim to enhance awareness so that people can recognize dementia symptoms earlier and provide or seek help when needed. It is also crucial to inform older adults themselves about the various options of care available once a dementia diagnosis is made. By engaging diverse communities and spreading knowledge, healthcare professionals are working towards a greater understanding of dementia, encouraging earlier intervention and reducing stigma.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We try to raise as much awareness as possible to the fact that help [for someone dealing] with dementia exists. We give talks to a broad audience and give guest lectures at secondary schools. We also provide education to bus drivers and people in the neighbourhood, aiming to increase awareness in an accessible way for everyone in society. We contribute to creating dementia-friendly municipalities.\u0026rdquo; (P_42/case manager/both city and rural)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 4: A personal approach by being patient and building trust\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals emphasized the importance of reducing barriers to accessing support by ensuring that individuals can reach out without unnecessary formalities. No official registration or referral should be required to initiate contact, allowing people to walk in and express their concerns without feeling pressured to take immediate steps. Providing a welcoming environment where people can freely express concerns, even before an official diagnosis, is key to facilitating early engagement. Engaging informally, such as over coffee or during a walk, was highlighted as an effective way to build trust and encourage early interactions. In addition, professionals emphasized the need for having patience and an empathetic approach. Instead of immediately offering solutions or advice, professionals should prioritize actively listening to the concerns of the dyads. This approach helps create a safe and non-judgemental environment, encouraging people to seek help when they are ready.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Being accessible \u0026ndash; [that people are able to] just drop by for a cup of coffee. Freedom is also important: the freedom to participate without having an official diagnosis or feeling obligated to take certain steps. The fact that people can come to the Odensehuis together also helps. Some couples deliberately visit as a pair simply because they enjoy spending a pleasant morning together.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P_23/coordinator dementia walk in centre/rural)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.3 Barriers for support\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 1: Fear and reluctance in seeking help\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals indicated that informal caregivers must first come to terms with their role as caregivers before they can start seeking help. Many caregivers feel that it is their responsibility to manage the situation on their own, as part of their familial role, whether as spouse or as child. Especially in rural areas, healthcare professionals indicated that caregivers often do not wish to disclose their struggles, aiming to maintain a positive and capable image to the outside world. This unwillingness to accept the situation, meaning the recognition that they need help to prevent that the demands of caregiving might exceed their resources, typically results in postponing the diagnosis, which in turn delays the start of support services, leaving little time for the healthcare professional to build trust or properly address the needs and preferences of the dyads.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;The partner does not see themselves as caregiver. Caregivers often feel they must handle [the situation] on their own. The boundaries [of caregiving] keep shifting, and they only realize there is a problem once they have already gone too far. By then, the situation has escalated.\u0026rdquo; (P_2/coordinator dementia daycare centre/city)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAdditionally, healthcare professionals observed that caregivers were often hesitant to seek help due to concerns that it may lead to immediate and significant changes in their life. Some caregivers worry that once help is sought, the person with dementia may no longer be able to live at home or be allowed to drive. Caregivers were often unaware of what services are available, but were also reluctant to ask for help because they fear that seeking assistance might lead to the involvement of numerous external agencies.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 2: Negative perceptions and stigma surrounding dementia\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSome people with dementia were aware that they might have dementia, but hesitated to disclose this due to concerns of societal reactions and fear of the stigma associated with the dementia label. People with dementia expressed an unwillingness in seeking out a diagnosis, as they often experience that people talk about a person with dementia rather than addressing them directly. This shift in social interactions can lead to a feeling of isolation and contributes to a loss of self-worth in the person with dementia, making people more afraid of seeking out a diagnosis.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;When Piet and Jan go to the Odensehuis together, and Piet has dementia, people will ask Jan how Piet is doing. You are no longer included in the conversation, they stop seeing you as a person. But that is not true \u0026ndash; you simply have dementia.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P_12/coordinator dementia walk in centre/rural)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAs a result of the stigma, healthcare professionals noted lower attendance at events explicitly labelled with the terms \u0026ldquo;dementia\u0026rdquo; or \u0026ldquo;Alzheimer\u0026rdquo;, as it can be discouraging. This was also seen at the national initiative of Alzheimer caf\u0026eacute;s/Alzheimer meet ups, again reflecting the stigma and misunderstanding surrounding dementia.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;In [our region], for example, support is provided in the community centre where we use the term \u0026ldquo;struggling brain\u0026rdquo; instead of \u0026ldquo;dementia\u0026rdquo;.\u0026rdquo; (P_43/social district support team/city)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 3: Lack of awareness and accessibility of services\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals in both city and rural areas reported significant challenges in reaching people in need of support. A key issue is the lack of awareness regarding available services among persons with dementia and informal caregivers, which is partly due to inadequate information provision. Many older adults struggle to access information because it is primarily available online and the application to access support requires digital skills. This presents a barrier for a generation that did not grow up with modern technology. Additionally, the language used in the information provided is often too complex or acts as a deterrent. Language should be more accessible and simpler to ensure that the information reaches those who need it most.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Highly educated older adults \u0026ndash; or their well-educated children \u0026ndash; are often able to find support. However, those with lower educational backgrounds find it much more complicated. I believe this is the group that should be prioritized, and information should be provided in much simpler language.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P_21/coordinator dementia daycare centre/city)\u003c/em\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 4: Bureaucratic hurdles and complex procedures\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals indicated that administrative burdens and the complexity of applying for services, such as the \u003cem\u003eWMO\u003c/em\u003e (\u0026ldquo;Social Support Act\u0026rdquo;) or \u003cem\u003eWLZ\u003c/em\u003e (\u0026ldquo;Long-Term Care Act\u0026rdquo;), deter people with dementia or caregivers from seeking support. Long waiting lists for case management, especially in city areas, further complicate access to timely support. Frequent policy changes within healthcare legislation and organisation and the shifting of responsibilities between professionals create unnecessary complexity for both care providers and recipients.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThese challenges are particularly pronounced in city areas, where dementia case managers reported high caseloads that limit their capacity for additional activities or personalized care. As a result, interactions with care recipients remain superficial. Moreover, if a dementia case manager is not immediately assigned to the dyad, the only contact with a healthcare professional after diagnosis is typically a brief check-in from the general practitioner twice a year. In contrast, healthcare professionals expressed a preference for a multidisciplinary approach that would provide continuous support from the initial signs of concern (\u0026ldquo;niet-pluis\u0026rdquo;) through to end-of-life care. In rural areas, collaboration between various organizations appears to be better established, whereas professionals in the city noted a fragmented system where different providers often operate in isolation, almost fostering competition between healthcare professionals rather than cooperation.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;If you look at the Dementia Care Standard, support should already begin when there is a feeling that something is not right (\u0026ldquo;niet-pluis\u0026rdquo;). It is frustrating to witness the [personnel] shortages in the workplace, as we want to help everyone who needs it, but that it simply not possible due to overwhelming waiting lists.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P_46/dementia case manager/city)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme 5: One-Size-Fits-All approaches do not work\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHealthcare professionals, particularly in city areas, highlighted the limitations of standardized support programs. For example, a pre-designed approach at dementia daycare centres, often fails to meet the diverse needs of the dyads. In such cases, a mismatch between the needs of the dyad and healthcare professionals can hinder further access to support. The professionals also noted that if a dyad feels pressured, it tends to be counterproductive for accepting care or support. Therefore, professionals need to be flexible and creative in order to engage people, for example by starting with informal activities like a walk, gradually building up trust, and introducing support in a way that aligns with the dyad\u0026rsquo;s preference and readiness. However, this requires sufficient time and financial resources, which are often lacking. Additionally, care professionals noted that the current approach of providing care is focussed too much on what the person with dementia can no longer do, rather than exploring their remaining strengths and abilities. As a result, care recipients may feel compelled to present themselves as more capable than they actually are, further delaying access to the necessary support.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Providing something that is meant for everyone often means it works for no one \u0026ndash; support should be tailored to individual needs and capabilities.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003cem\u003e(P_32/informal care advisor/city)\u003c/em\u003e\u003cstrong\u003e\u003cbr\u003e\u003c/strong\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study explored the needs of people with dementia and their informal caregivers in the early stages of dementia, and focused on how to reach this group more effectively as well as the practical challenges professionals face in providing support. By including participants from both rural and city areas, we also aimed to explore how geographical context influenced the accessibility of services and the ways in which support is sought and offered.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur findings indicate that in the early stages of dementia, informal caregivers often underestimated their need for professional support, despite facing increasing challenges in caring for their loved ones. Practical assistance, such as domestic help or support with daily tasks, often appeared to be the first form of support caregivers were willing to accept. This is consistent with earlier findings, where caregivers retrospectively indicated they would have benefited from someone to talk to and from earlier recognition of their problems (14, 21). This phenomenon has been labelled as the early stage needs paradox: caregivers in the early phase struggle to acknowledge their need for care due to difficulties in accepting changes and fear of stigma, as well as a preference to resolve matters independently.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn our study, dyads emphasized the importance of timely, clear information on dementia, particularly regarding symptom progression, available services and navigating care. Healthcare professionals similarly noted that inadequate information provision and complicated procedures for accessing care hindered awareness of available services, especially among people with lower literacy or limited digital skills, which tend to be more prevalent in the current older population (22, 23). Earlier research has found that limited knowledge of and the complexity of the healthcare system can delay help-seeking (21). Consequently, we observed that support-seeking behaviour was frequently delayed due to a lack of tailored information. Dyads expressed a need for emotional support and a sense of being heard, and case management was identified as a critical need across our sample. This finding aligns with the latest report on the wishes and needs of people with dementia and their caregivers in the Netherlands (24), where case management was viewed as the most important type of professional dementia care.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHealthcare professionals in our study emphasized the importance of strong collaboration with other healthcare organizations and maintaining clear lines of communication, particularly with general practitioners and community-based services. In both rural and city areas, participants described being visible in the community, through walk-in centres, local events, or informal networks, as crucial for lowering the threshold for contact. They also recommended educational efforts aimed at increasing awareness, such as presentations to diverse community groups, in order to improve recognition and acceptance of dementia. These findings suggest that professionals believe that pro-active, community-based strategies are key for engaging dyads in early-stage care. These perspectives align with previous research, which found that public education to reduce stigma and raise awareness has been found to be a key strategy in creating inclusive, dementia-friendly communities (25). Similarly, raising public awareness of dementia and fostering positive attitudes toward available interventions may reduce stigma and lower the threshold for seeking an early diagnosis (26)\u003cstrong\u003e.\u003c/strong\u003e Professionals in our study described low-threshold strategies that prioritize a personal approach based on patience and trust-building, such as informal conversations over coffee or during a walk, as essential for establishing trust. This approach mirrors caregivers’ preferences for informal, non-judgemental contact that does not immediately imply a transition to formal care. Embedding these facilitators into policy and care pathways may help bridge the gap between the current system and the needs of the dyad.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWhile these strategies show promise for improving timely acceptance of dementia care, several barriers for early engagement were still identified. Both professionals and dyads described practical and organizational challenges that complicated early engagement in care and support. They emphasized that bureaucratic procedures, frequent policy changes, and long waiting lists deter people with dementia and their caregivers from seeking support. Dyads, especially in the city area, often struggled to navigate the healthcare system, where the absence of a familiar face or central point of contact led to delayed engagement (21). Furthermore, professionals in the city noted that high caseloads limited their ability to provide personalized or continuous support, sometimes resulting in brief and superficial interactions with dyads, as was also found in earlier research (27). Healthcare professionals also expressed concerns about one-size-fits-all approaches, which often failed to meet the specific needs of the dyad and could hinder their acceptance of support (28). Municipalities and healthcare organisations should consider how care infrastructures can better support professionals in building familiarity and trust in flexible and creative ways. Professionals stressed that such efforts require time, resources, and continuity: conditions not always met within the current care infrastructure (27).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDespite a growing emphasis on early intervention, many dyads in our sample still postponed seeking support, not solely due to a lack of knowledge, but also due to personal values concerning role identity, independence, fear, and stigma. Previous research has identified emotional denial as an important barrier for seeking help in early-stage dementia (29). In the current sample, caregivers similarly expressed hesitation in seeking help, fearing it might result in immediate and substantial changes to their lives. However, earlier research has shown that when help is sought at a later stage, the person with dementia was less involved in decision-making concerning daily support (3). Healthcare professionals highlighted the impact of stigma and societal perceptions, echoing what caregivers and persons with dementia described as changes in social interactions and a fear of being labelled following a diagnosis (30). Consequently, a vicious cycle appears to emerge, where limited awareness of services and the stigma surrounding dementia contribute to fear of seeking help or even seeking out a diagnosis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStrengths and limitations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAmong the strengths of this study is the inclusion of multiple perspectives from informal caregivers, people with dementia, and healthcare professionals. This approach provides a comprehensive understanding of the needs and challenges in early-stage dementia from both care recipients and providers. The study looked at the everyday strategies professionals use to engage people with dementia and informal caregivers, as well as systemic barriers, offering practical insights for improving outreach and accessibility of care. Furthermore, the inclusion of participants from both city and rural areas strengthens the transferability of our findings. Comparing city and rural areas is a novel contribution to the literature, which showed how geographical context influences access to care, support-seeking behaviour, and availability of services. By focusing explicitly on the early stages of dementia, this study addressed a phase that is often underrepresented in dementia research, despite its significance for timely intervention and quality of life of the target group.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSome limitations should be noted. There may have been a potential recall bias (31), as the dyads who agreed to participate might have been more proactive and had more engagement with healthcare professionals. This could have possibly led to an underrepresentation of those who were more isolated or harder to reach, potentially resulting in differences in reported needs or barriers. Additionally, reflecting retrospectively on the early stage may have been influenced by the current experiences and hindsight of the dyads, shaping how they remember their earlier experiences (14, 31). Lastly, we did not return the interview transcripts to the healthcare professionals for comments or feedback, in order to not further burden them during the COVID-19 pandemic, which means our interpretations of their answers may differ from their intended meanings.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eScientific and clinical relevance of the study\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study found that delays in seeking support during the early stages of dementia are not solely due to a lack of information, but arise from hesitation due to role identity, independence, and stigma, and from system barriers such as complex bureaucratic procedures and fragmented services. While informal caregivers may experience significant burden, they tend to underestimate their own support needs, favouring practical, low-threshold help like domestic help over interventions explicitly labelled as dementia care. This preference might be a promising entry point for early engagement that is perceived as less intrusive, and better collaboration with these services might lead to earlier symptom recognition. Both caregivers and healthcare professionals emphasized the need for timely emotional support and a consistent point of contact to build trust, but the current healthcare system might offer support in ways that do not fully align with the needs and preferences of people with dementia and their caregivers. Effective early-stage strategies might work better if support is reframed as a way to maintain agency and control during a challenging life phase, particularly for caregivers who feel responsible to handle the situation on their own. To facilitate this shift, it may be beneficial to adopt a more positive perspective of dementia, recognising the abilities of people with dementia in addition to their losses.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur findings confirm the relevance of several innovative forms of support for people with dementia and their caregivers that have been developed and positively evaluated over the past decades. In the Netherlands, these include Meeting Centres (32-34), Odensehuizen, the Social Approach to Dementia (35), DemenTalent (36), and individual or telephone-based coaching by, for example, case managers (28, 37, 38). These person-centred approaches aim to inform caregivers and provide practical, emotional, and social support. Moreover, the combined Meeting Centres Support Program has been shown to be more effective than traditional daycare centres in improving the well-being of the person with dementia and informal caregiver, and are now widely implemented in the Netherlands and disseminated in other parts of Europe and beyond. Such initiatives exemplify how community-based, low-threshold forms of support can effectively lower barriers to care, promote earlier engagement, and focus on the remaining strengths and preferences of people with dementia. By framing support as a way to continue engaging in meaningful activities and maintaining quality of life, we may therefore encourage people to seek support at an earlier stage. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFuture directions for research and practice\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn city areas, care structures tend to be fragmented, resulting in limited continuity and longer waiting times for case management. In contrast, dyads in rural areas frequently described a proactive and well-connected network of healthcare professionals that facilitated smoother access to services. These insights highlight the importance of local context in designing interventions and implementing these in dementia care pathways. Future research should explore whether interventions can be better aligned with their geographical infrastructure. It would also be beneficial to investigate how collaboration across disciplines and organizations could be enhanced to promote continuity and accessibility in early-stage dementia care. Additionally, outreach strategies tailored to underrepresented groups should be examined. For example, individuals with low literacy or limited digital access may struggle to obtain the support they need. Future research should assess whether more diverse populations, also including migrants, socially isolated caregivers, or people with dementia lacking a support network, can be reached more effectively. We must also be mindful of the role of language and labelling, as the stigma associated with a dementia diagnosis may influence uptake and engagement in the early phases of care.\u0026nbsp;\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study explored how to effectively reach people with dementia and their informal caregivers during the early stages of the disease by looking at perceived needs, facilitators and barriers. Our findings indicate that a delay in seeking support is often related to limited awareness of services, emotional readiness, and stigma surrounding dementia. Practical access is frequently obstructed by bureaucratic procedures and fragmented care systems, especially in city settings. Dyads emphasized the need for timely information, emotional support, and the availability of a case manager, while professionals stressed the importance of informal, proactive engagement strategies. Regional variations in healthcare professional networks and outreach methods suggest that local context can significantly influence access to care. These insights may help the further development and dissemination of person-centred, context-sensitive approaches to support people in the early stages of dementia. Early-stage care acceptance may improve quality of life for the person with dementia, alleviate caregiver burden, and reduce long-term healthcare costs.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eADL: Algemeen Dagelijkse Levensverrichtingen (translated: Activities of Daily Living); COVID-19: Coronavirus Disease 2019; D: Dyad; F: Female; GP: General Practitioner; H: Healthcare Professional; M: Male; MAXQDA: Max Weber Qualitative Data Analysis; METC: Medisch Ethische Toetsingscommissie (translated: Medical Ethics Review Committee); POH: Praktijkondersteuner Huisartsenzorg (translated: General Practice Professional); PwD: Person with Dementia; WLZ: Wet Langdurige Zorg (translated: Long-Term Care Act); WMO: Wet Maatschappelijke Ondersteuning (translated: Social Support Act); ZonMw: ZorgOnderzoek Nederland / Medische Wetenschappen (translated: Dutch Organization for Health Research and Care Innovation).\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was performed in accordance with the Declaration of Helsinki. Ethical approval for this study was obtained by the Medical Ethics Committee of the Amsterdam University Medical Centre (METC-2021.0295). All participants in this study have provided written informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated and/or analysed during the current study will not be shared due to privacy reasons.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare to have no conflict of interest related to the content of this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSanne Balvert is supported by ZonMw, the Dutch Organization for Health Research and Care Innovation (grant number Eerder Erbij: 852002106).\u0026nbsp;The sponsor had no role in the design, methods, analysis, or preparation of the paper. The content is solely the responsibility of the authors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSB and MM designed and acquired funding for the Eerder Erbij study, where SB was the principal investigator. SB and MM were responsible for the conceptualization of this study. SB collected the data, carried out the analysis and wrote the paper. RdV assisted with the analysis and with writing the paper. MM, RMD, and LV made substantial suggestions to earlier versions of the manuscript. All authors have read and approved this final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to thank all healthcare professionals involved for their time, valuable insights, and their help with participant recruitment. We are also grateful for the caregivers and persons with dementia who participated in this study, and for the research assistants for their invaluable help with transcribing the data.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA special thank you for Hendrika de Vries for her help with data collection, and to Joziene Teeuwsen, Eveline Bersma, Mirjam Valk, and Sjef van Bommel for their contributions to the development of the interview guide.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical Trial Number\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eClinical trial number: not applicable.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eWorld Health Organization. Global action plan on the public health response to dementia 2017\u0026ndash;2025. World Health Organization; 2017. Report No.: 9241513489.\u003c/li\u003e\n\u003cli\u003eGiezendanner S, Monsch AU, Kressig RW, Mueller Y, Streit S, Essig S, et al. General practitioners\u0026rsquo; attitudes towards early diagnosis of dementia: a cross-sectional survey. BMC family practice. 2019;20:1-9.\u003c/li\u003e\n\u003cli\u003eMoon H, Townsend AL, Whitlatch CJ, Dilworth-Anderson P. Quality of life for dementia caregiving dyads: Effects of incongruent perceptions of everyday care and values. The Gerontologist. 2017;57(4):657-66.\u003c/li\u003e\n\u003cli\u003eStephan A, Bieber A, Hopper L, Joyce R, Irving K, Zanetti O, et al. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC geriatrics. 2018;18:1-16.\u003c/li\u003e\n\u003cli\u003eParker M, Barlow S, Hoe J, Aitken L. Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia. International psychogeriatrics. 2020;32(5):611-34.\u003c/li\u003e\n\u003cli\u003eNasreddine Z, Garibotto V, Kyaga S, Padovani A. The early diagnosis of Alzheimer\u0026rsquo;s disease: A patient-centred conversation with the care team. Neurology and Therapy. 2023;12(1):11-23.\u003c/li\u003e\n\u003cli\u003eGaugler JE, Kane RL, Kane RA, Newcomer R. Early community-based service utilization and its effects on institutionalization in dementia caregiving. The Gerontologist. 2005;45(2):177-85.\u003c/li\u003e\n\u003cli\u003eBayly M, Morgan D, Elliot V, Kosteniuk J, Froehlich Chow A, Peacock S, et al. Does early-stage intervention improve caregiver well-being or their ability to provide care to persons with mild dementia or mild cognitive impairment? A systematic review and meta-analysis. Psychology and Aging. 2021;36(7):834.\u003c/li\u003e\n\u003cli\u003eVan Vliet D, de Vugt ME, Bakker C, Koopmans RT, Pijnenburg YA, Vernooij-Dassen MJ, et al. Caregivers\u0026apos; perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics. 2011;23(9):1393-404.\u003c/li\u003e\n\u003cli\u003eWoods B, Arosio F, Diaz A, Gove D, Holmerov\u0026aacute; I, Kinnaird L, et al. Timely diagnosis of dementia? Family carers\u0026apos; experiences in 5 European countries. International Journal of Geriatric Psychiatry. 2019;34(1):114-21.\u003c/li\u003e\n\u003cli\u003eNg CK, Leung DK, Cai X, Wong GH. Perceived help-seeking difficulty, barriers, delay, and burden in carers of people with suspected dementia. International Journal of Environmental Research and Public Health. 2021;18(6):2956.\u003c/li\u003e\n\u003cli\u003eConnolly A, Gaehl E, Martin H, Morris J, Purandare N. Underdiagnosis of dementia in primary care: variations in the observed prevalence and comparisons to the expected prevalence. Aging \u0026amp; mental health. 2011;15(8):978-84.\u003c/li\u003e\n\u003cli\u003eVan Der Roest HG, Meiland FJ, Maroccini R, Comijs HC, Jonker C, Dr\u0026ouml;es R-M. Subjective needs of people with dementia: a review of the literature. International Psychogeriatrics. 2007;19(3):559-92.\u003c/li\u003e\n\u003cli\u003eBoots LM, Wolfs CA, Verhey FR, Kempen GI, de Vugt ME. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. International psychogeriatrics. 2015;27(6):927-36.\u003c/li\u003e\n\u003cli\u003eWolfs CA, de Vugt ME, Verkaaik M, Verkade PJ, Verhey FR. Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments. International journal of geriatric psychiatry. 2010;25(10):1006-12.\u003c/li\u003e\n\u003cli\u003eVan der Roest HG, Meiland FJ, Comijs HC, Derksen E, Jansen AP, Van Hout HP, et al. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International psychogeriatrics. 2009;21(5):949-65.\u003c/li\u003e\n\u003cli\u003eGiebel C, Hanna K, Watson J, Faulkner T, O\u0026rsquo;Connell L, Smith S, et al. A systematic review on inequalities in accessing and using community-based social care in dementia. International Psychogeriatrics. 2024;36(7):540-63.\u003c/li\u003e\n\u003cli\u003eWang G, Marradi C, Albayrak A, van der Cammen TJ. Co-designing with people with dementia: A scoping review of involving people with dementia in design research. Maturitas. 2019;127:55-63.\u003c/li\u003e\n\u003cli\u003eBalvert S, Milders M, Bosmans J, Heymans M, van Bommel S, Dr\u0026ouml;es R-M, et al. The MOMANT study, a caregiver support programme with activities at home for people with dementia: a study protocol of a randomised controlled trial. BMC geriatrics. 2022;22(1):295.\u003c/li\u003e\n\u003cli\u003eVears DF, Gillam L. Inductive content analysis: A guide for beginning qualitative researchers. Focus on Health Professional Education: A Multi-Professional Journal. 2022;23(1):111-27.\u003c/li\u003e\n\u003cli\u003eGregg JE, Simpson J, Nilforooshan R, Perez-Algorta G. What is the relationship between people with dementia and their caregiver\u0026rsquo;s illness perceptions post-diagnosis and the impact on help-seeking behaviour? A systematic review. Dementia. 2021;20(7):2597-617.\u003c/li\u003e\n\u003cli\u003eVercruyssen A, Schirmer W, Geerts N, Mortelmans D, editors. How \u0026ldquo;basic\u0026rdquo; is basic digital literacy for older adults? Insights from digital skills instructors. Frontiers in Education; 2023: Frontiers Media SA.\u003c/li\u003e\n\u003cli\u003eBialik K, Fry R. Millennial life: How young adulthood today compares with prior generations. Pew Research Center. 2019;14.\u003c/li\u003e\n\u003cli\u003evan der Heide I, de Graaff M, van den Buuse S, Rikkers-Pluijlaar I, Bos N. Dementiemonitor 2024. 2024.\u003c/li\u003e\n\u003cli\u003eHung L, Hudson A, Gregorio M, Jackson L, Mann J, Horne N, et al. Creating dementia-friendly communities for social inclusion: A scoping review. Gerontology and Geriatric Medicine. 2021;7:23337214211013596.\u003c/li\u003e\n\u003cli\u003eDe Vugt ME, Verhey FR. The impact of early dementia diagnosis and intervention on informal caregivers. Progress in neurobiology. 2013;110:54-62.\u003c/li\u003e\n\u003cli\u003eReinhoudt‐den Boer L, van Wijngaarden J, Huijsman R. Coproducing care and support delivery in healthcare triads: Dutch case managers for people with dementia at home using strategies to handle conflict in the healthcare triad. Health \u0026amp; Social Care in the Community. 2022;30(5):e1560-e9.\u003c/li\u003e\n\u003cli\u003eVan Mierlo L, Meiland F, Van Hout H, Dr\u0026ouml;es R. Toward an evidence-based implementation model and checklist for personalized dementia care in the community. International Psychogeriatrics. 2016;28(5):801-13.\u003c/li\u003e\n\u003cli\u003eJeyagurunathan A, Yuan Q, Samari E, Zhang Y, Goveas R, Ng LL, et al. Facilitators and barriers of help-seeking for persons with dementia in Asia\u0026mdash;findings from a qualitative study of informal caregivers. Frontiers in Public Health. 2024;12:1396056.\u003c/li\u003e\n\u003cli\u003eHerrmann LK, Welter E, Leverenz J, Lerner AJ, Udelson N, Kanetsky C, et al. A systematic review of dementia-related stigma research: Can we move the stigma dial? The American Journal of Geriatric Psychiatry. 2018;26(3):316-31.\u003c/li\u003e\n\u003cli\u003eHunger M, Schwarzkopf L, Heier M, Peters A, Holle R, Group KS. Official statistics and claims data records indicate non-response and recall bias within survey-based estimates of health care utilization in the older population. BMC health services research. 2013;13:1-11.\u003c/li\u003e\n\u003cli\u003eDr\u0026ouml;es R-M, Breebaart E, Meiland F, Van Tilburg W, Mellenbergh G. Effect of Meeting Centres Support Program on feelings of competence of family carers and delay of institutionalization of people with dementia. Aging \u0026amp; mental health. 2004;8(3):201-11.\u003c/li\u003e\n\u003cli\u003eDr\u0026ouml;es RM, Meiland F, Schmitz M, Van Tilburg W. Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi‐centre implementation study. International journal of geriatric psychiatry. 2004;19(7):673-84.\u003c/li\u003e\n\u003cli\u003eBrooker D, Evans S, Evans S, Bray J, Saibene FL, Scorolli C, et al. Evaluation of the implementation of the Meeting Centres Support Program in Italy, Poland, and the UK; exploration of the effects on people with dementia. International Journal of Geriatric Psychiatry. 2018;33(7):883-92.\u003c/li\u003e\n\u003cli\u003evan Wijngaarden E, Alma M, The A-M. \u0026lsquo;The eyes of others\u0026rsquo; are what really matters: The experience of living with dementia from an insider perspective. PLoS One. 2019;14(4):e0214724.\u003c/li\u003e\n\u003cli\u003evan Rijn A, Meiland F, Dr\u0026ouml;es R-M. Linking DemenTalent to Meeting Centers for people with dementia and their caregivers: a process analysis into facilitators and barriers in 12 Dutch Meeting Centers. International Psychogeriatrics. 2019;31(10):1433-45.\u003c/li\u003e\n\u003cli\u003eBoots LM, de Vugt ME, Kempen GI, Verhey FR. Effectiveness of a blended care self-management program for caregivers of people with early-stage dementia (partner in balance): randomized controlled trial. Journal of medical Internet research. 2018;20(7):e10017.\u003c/li\u003e\n\u003cli\u003eDr\u0026ouml;es R-M, van Rijn A, Rus E, Dacier S, Meiland F. Utilization, effect, and benefit of the individualized meeting centers support program for people with dementia and caregivers. Clinical interventions in aging. 2019:1527-53.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"dementia, early-stage dementia care, informal caregivers, healthcare professionals, facilitators, barriers, qualitative content-analysis","lastPublishedDoi":"10.21203/rs.3.rs-6863817/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6863817/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWhile timely support can benefit persons with dementia (PwD) and their informal caregivers, the period between recognizing the first symptoms and receiving a formal diagnosis is often prolonged. Barriers like stigma, denial, and symptom misinterpretation hinder the acceptance of care, leaving many without adequate support. Identifying strategies to reach PwD earlier and overcome these barriers is crucial. This study aimed to (i) explore the needs of community-dwelling PwD and informal caregivers; (ii) gain insight into facilitators and barriers for support; and (iii) identify strategies used by healthcare professionals to improve early-stage care acceptance, and whether geographical context influenced this. Therefore, we explored the perspectives of all stakeholders involved.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis qualitative study used a cross-sectional design. We recruited 35 dyads of PwD (mean age 77.7±7 years; 51% female) and informal caregivers (70.0±14 years; 60% female) through daycare centres and memory clinics in the Netherlands. Healthcare professionals (N=47; 87% female; 38% dementia case manager) were contacted via regional dementia networks. Open-ended questionnaires were used to assess dyads’ experiences and needs. Healthcare professionals participated in semi-structured interviews on how to effectively reach dyads. Audio-recorded interviews were transcribed. Thematic content analysis was used on all data by two independent coders to identify key themes.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRetrospectively, dyads indicated a strong need for timely knowledge, practical resources, and peer support in the early-stage. Dementia case managers were considered crucial for accessing support. Effective strategies for professionals to improve early-care acceptance included: community engagement and accessibility, increasing visibility through education and awareness, a personal approach based on patience and trust, and better collaboration with other organisations to maintain short lines of communication. Barriers to help-seeking included stigma, lack of awareness, misalignment of services and needs, bureaucratic complexity, and difficulty navigating the healthcare system. Professionals stressed the need for tailored outreach strategies, because of perceived differences between city and rural regions in effectiveness of strategies as well as dyads’ needs.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEarly-stage support should be made more visible in communities and tailored to individual needs. Reducing stigma and bureaucratic complexity, while strengthening local facilitators, may improve access to timely and meaningful support.\u003c/p\u003e","manuscriptTitle":"Facilitators and Barriers to Early-Stage Dementia Care: A Qualitative Study on the Perspectives of Persons with Dementia, Informal Caregivers, and Healthcare Professionals","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-19 09:49:44","doi":"10.21203/rs.3.rs-6863817/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"40f2860c-7749-43da-b10e-19016852b4f8","owner":[],"postedDate":"September 19th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-04-29T07:56:34+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-19 09:49:44","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6863817","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6863817","identity":"rs-6863817","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}