Behind the closed doors: A qualitative study to explore the silent battle of dementia family caregivers in the Indian context

Behind the closed doors: A qualitative study to explore the silent battle of dementia family caregivers in the Indian context | 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 Behind the closed doors: A qualitative study to explore the silent battle of dementia family caregivers in the Indian context IPSITA BASU, Susmita Mukhopadhyay, Giovanni Lamura, Jenny T. van der Steen, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9226253/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 Dementia is a growing global public health concern and India alone accounts for an estimated 4.1 million cases, a figure expected to rise substantially in coming decades. In such settings, dementia care is largely dependent on informal family caregivers, who often provide extensive, unpaid support with limited access to formal services. Caregiving is further complicated by low dementia awareness, cultural misconceptions, stigma, and inadequate healthcare infrastructure. This study aims to examine the multidimensional challenges faced by family caregivers of people living with dementia and to identify their unmet needs in urban areas of West Bengal, India. Methods Descriptive qualitative research design was adopted to explore caregivers’ lived experiences. Fourteen primary family caregivers were recruited using purposive and snowball sampling. Data were analysed using reflexive thematic analysis following Braun and Clarke’s six-phase framework. Ethical approval was obtained, and confidentiality was maintained throughout. Results Two overarching themes emerged: (1) multidimensional challenges in caregiving and (2) unmet needs of family caregivers. Key challenges included limited knowledge and awareness of dementia, distress associated with behavioural and psychological symptoms, cultural beliefs and misconceptions and stigma. Conclusion This study highlights the complex and interrelated challenges faced by family caregivers of people living with dementia in urban India. Findings underscore the urgent need for improved dementia awareness, accessible and integrated care services and culturally sensitive, person-centred approaches. Strengthening support systems for family caregivers, including education, healthcare access and psychological support is essential for enhancing caregiver well-being and ensuring sustainable dementia care in resource-limited settings. Dementia family caregiving caregiver burden unmet needs India qualitative research 1. Background Dementia has become one of the most pressing global public health challenges, placing substantial burdens on individuals, families, healthcare systems and societies. It affects an estimated 47.5 million individuals globally, with projections indicating an increase to nearly 135 million cases by 2050, largely driven by population ageing [ 1 ]. This substantial and accelerating rise in prevalence presents significant challenges for geriatric medicine, given the high burden of multi-morbidity, functional decline and complex care needs among older adults living with dementia. These trends underscore the necessity for robust epidemiological evidence and the development of integrated, person-centered models of care within ageing health systems [ 2 ]. Their number is growing mostly in low and middle income countries where around two-thirds of people are living with dementia [ 3 ]. A substantial portion of individuals living with dementia reside in India where 4.1 million people are affected by this condition [ 4 ], a number that is expected to triple by 2050, making this country home to the highest number of family caregivers globally [ 5 ]. In most cases, care is provided by family members or other unpaid, untrained caregivers who often receive little or no formal support, particularly in low and middle income countries [ 6 ]. In developing countries like India, family caregivers play a vital role in supporting people with dementia [ 7 ]. The responsibility for dementia care typically falls entirely on the family [ 12 ]. Family caregivers frequently encounter multiple stressors including time constraints, behavioural changes in the person with dementia and financial pressures, all of which can be difficult to manage alongside their work and other family responsibilities [ 8 ]. Such challenges often contribute to serious health consequences for family caregivers themselves including depression, anxiety and various physical health problems [ 8 – 10 ]. However, they often lack access to essential dementia specific services, reliable information about the condition and adequate healthcare support [ 5 , 11 ]. Providing care is especially demanding as dementia progresses, with increased cognitive and functional decline and the emergence of challenging behaviors [ 13 ]. Family caregivers frequently experience significant financial strain, physical exhaustion, emotional distress and social isolation [ 14 ]. Recent studies from India further emphasize these burdens [ 10 , 15 – 17 ]. As dementia progresses to moderate and severe stages, progressive neuro-pathological changes give rise to more visible cognitive and behavioural symptoms, such as disorientation, personality changes and difficulties with basic activities of daily living. These changes are compounded by heightened vulnerability to comorbidities including falls, infections, malnutrition and frailty which further exacerbate care needs and accelerate loss of independence [ 18 – 21 ]. Consequently, people living with dementia experience a trajectory of escalating dependence on family members, unpaid caregivers and health systems, underscoring the urgent need for dementia-informed policies, long-term care planning and culturally sensitive interventions [ 22 ]. Despite the pivotal role family caregivers play in the dementia care pathway, their experiences, challenges, and unmet needs remain largely overlooked in policy, practice and research. In India, the number of people living with dementia is increasing, however, awareness of dementia remains limited, diagnostic services are inadequate and persistent stigma continues to influence health-seeking behaviours [ 23 – 24 ]. Limited dementia literacy frequently results in delayed recognition of symptoms, misattribution of cognitive decline to normal ageing and the prioritisation of cultural or spiritual explanations over biomedical interpretations [ 25 ]. These misconceptions can delay diagnosis and access to appropriate care, exacerbating the challenges experienced by both the person with dementia and their carer. In addition, family caregivers commonly report significant emotional distress associated with behavioural and psychological symptoms of dementia (BPSD) such as aggression, wandering, disinhibition, hallucinations and sleep disturbances. Managing these behaviours is often cited as the most stressful aspect of caregiving, contributing to high levels of burden, anxiety and depression among family caregivers [ 26 ]. Another key issue is the limited use of person-centred care approaches within current services. International guidelines underscore the importance of care that reflects individuals’ personal histories, cultural backgrounds, preferences and psychosocial needs, rather than an exclusive focus on biomedical symptoms [ 27 ]. Yet in many Indian settings, dementia care remains largely task-based, medically focused and insufficiently responsive to individual needs. Family caregivers often report exclusion from decision-making, despite their close knowledge of the person’s behaviours, routines and communication patterns [ 28 – 29 ]. This mismatch between care provision and lived needs contributes to increased distress, behavioural difficulties and reduced satisfaction with care. In light of these complexities, there is a clear need for research that foregrounds the lived experiences of family caregivers, particularly within socio-cultural contexts where stigma, limited awareness and structural constraints significantly shape the caregiving journey. Although the global literature increasingly documents the burdens faced by family caregivers, substantial gaps remain in evidence from South Asian settings, especially urban Indian contexts undergoing rapid demographic and social transitions [ 28 , 30 ]. Gaining insight into family caregivers’ perspectives is critical for informing culturally responsive interventions, strengthening health system capacity and developing policies that support both effective dementia care and family carer well-being. This study responds to this gap through an in-depth examination of the multidimensional challenges and unmet needs of family caregivers of people living with dementia in urban cities in West Bengal, India. Focusing on family caregivers’ own narratives, the study provides critical insights into how knowledge gaps, behavioural changes, cultural beliefs, stigma, systemic barriers and emotional burdens interact to shape the caregiving experience. These findings add to the growing evidence base on dementia in low and middle income countries and highlight the urgent need for comprehensive, community-based and culturally informed strategies to support both people living with dementia and their families. Strengthening support for family caregivers is essential not only for improving quality of life but also for developing sustainable dementia care systems in the context of India’s rapidly ageing population. With these backdrops, the present study attempts to understand the multidimensional challenges faced by family caregivers of people living with dementia and to identify the unmet needs of family caregivers. 2. Methods 2.1 Study design A descriptive qualitative research design was employed to comprehensively describe the phenomenon under investigation, in line with the study’s objective of examining multidimensional challenges and unmet needs of informal family caregivers. This methodological approach is particularly appropriate as it facilitates rich, contextually grounded insights into participants’ experiences, perceptions, and practices, without restriction by a priori theoretical assumptions. The flexibility inherent in descriptive qualitative research is critical for capturing the complexity of everyday challenges and for identifying unmet needs that have practical relevance. On the background of these conditions, the qualitative approached adopted in this study has been based on semi-structured interviews with informal primary family caregivers who take care their family member with dementia in West Bengal, India. 2.2 Participant Recruitment We employed purposive sampling, guided by the principle of information power [ 31 ], to ensure a diverse sample of participants. The study targets a specific group of informal primary family caregivers within a defined context of dementia care in primary care settings. Given this narrow focus, the concept of information power supports the use of a smaller sample size. We estimated a sample of up to 15 participants, based on the research aim, the characteristics of the participant group, the adopted methods and the planned analytical approach [ 31 ]. Participants were recruited through the organization “Alzheimer’s and Related Disorder Society of India (ARDSI) - Calcutta Chapter, Kolkata”, West Bengal adopting snowball sampling approach. At first the research team made contact with participants over telephone with the help of a member of the ARDSI, which allowed to produce a list of willing participants was made. Those who agreed to participate were approached by a member of the research team (IB) and fully informed about the purpose of the study and informed consent was obtained from each participant before the interview, which was administered at willing participants’ residence following their convenience. We included 14 primary family caregivers identified as the relatives most involved in assisting person living with dementia in their day-to-day life. While aiming to be as inclusive as possible, we excluded professional caregivers and those who could not speak Bengali, Hindi and English. 2.3 Data collection Interviews were conducted using a semi-structured interview guide collaboratively developed by the research team (Table 1 ), informed by a descriptive qualitative methodology with phenomenological underpinnings. The interview guide was designed to elicit rich descriptions of participants’ lived experiences, perceptions and practices related to the phenomenon of interest, while allowing flexibility to pursue issues raised by participants. Prior to data collection, the guide was pilot tested with five participants to assess clarity, relevance and flow and minor refinements were made accordingly. All interviews were conducted by a single trained researcher (IB), who is multilingual and fluent in Bengali, Hindi and English. IB and SM, both read all transcript and hear audio-recordings. This facilitated interviewing participants in their preferred language and supported the elicitation of nuanced, culturally grounded accounts of their experiences. Interviews were conducted face to face in participants’ homes to promote comfort, rapport and openness, consistent with phenomenological approaches that prioritize naturalistic settings. Interviews lasted between 60 and 120 minutes, allowing sufficient time for in-depth exploration of participants’ experiences. Prior to commencing each interview, participants were provided with detailed information about the study aims, the interview process and their rights including confidentiality and voluntary participation. Basic demographic information was collected to contextualize participants’ accounts. With participants’ permission, all interviews were audio recorded to ensure accurate capture of participants’ narratives. Recordings were transcribed verbatim and interviews conducted in languages other than English were translated into English during transcription. To enhance methodological rigour and credibility, a second researcher (SM) independently checked the transcripts against the original audio recordings to verify accuracy and consistency. This process supported faithful representation of participants’ voices, which is central to descriptive qualitative and phenomenological inquiry. Table 1 Interview Guide No. Interview questions 1 Can you describe your role as a family carer for your relative living with dementia? 2 How did you first notice changes in your family member, and how did you understand these changes at that time? 3 What challenges do you face in providing day-to-day care for your family member with dementia? 4 How do behavioural and psychological changes in your family member affect you and your family life? 5 What kinds of support (formal or informal) are currently available to you? 6 What difficulties have you faced in accessing healthcare or dementia-related services? 7 How do cultural beliefs, family expectations or societal attitudes influence your caregiving experience? 8 What additional support or resources do you feel would help you in your caregiving role? 2.4 Data analysis All interview transcripts were imported into NVivo version 14 [ 32 ] to support systematic data management and analysis. Data were analysed using a descriptive qualitative approach informed by phenomenological principles, with the aim of capturing and interpreting participants’ lived experiences and meanings related to the phenomenon of interest. Analysis was conducted by two multilingual researchers (IB and SM), both fluent in Bengali, Hindi and English. Their cultural familiarity with Indian sociocultural norms, family structures and caregiving practices contributed important contextual insight, enabling a nuanced and culturally sensitive interpretation of the data while remaining grounded in participants’ accounts. The analytic process followed the six-phase reflexive thematic analysis framework described by Braun and Clarke (2021) [ 33 ]. First, both researchers engaged in repeated, immersive reading of the transcripts to achieve in-depth familiarisation with the data. Second, initial codes were generated inductively across the dataset, staying close to participants’ language and experiential descriptions. Third, codes were examined and clustered into potential themes that reflected shared patterns of meaning across participants’ narratives. Fourth, these preliminary themes were iteratively reviewed and refined through comparison with the coded data and the full dataset to ensure coherence, distinctiveness, and alignment with the study aims. Example of the analytical process on which these steps were based are illustrated in Table 2 . In the following fifth phase, themes were clearly defined and named to capture their essence and analytic significance. Finally, an interpretive narrative was developed, supported by illustrative data extracts, to produce the final analytic report. To enhance analytic rigour and reflexivity, each researcher initially coded the transcripts independently. Rather than seeking inter-coder reliability, differences in interpretation were discussed during regular research team meetings, fostering reflexive dialogue and collaborative sense-making. This process allowed researchers to critically examine their assumptions, disciplinary perspectives and cultural positioning, which is consistent with reflexive thematic analysis and phenomenologically informed qualitative inquiry. To ensure confidentiality and protect participant anonymity, each participant was assigned a unique identification (ID) number, which was used consistently throughout data management, analysis, and reporting. Selected quotations presented in the findings were translated from Bengali into English and are attributed only by participant ID. Table 2 Examples of the analytical process followed by this study Data extraction Initial code Subtheme Theme “I had never heard the word dementia before my mother was diagnosed. We thought it was just old age.” Limited knowledge of dementia Lack of knowledge and awareness Multidimensional challenges faced by family carer in providing family care “When he became aggressive and started wandering at night, I felt scared and helpless.” Distress due to behavioural changes Behavioural and psychological symptoms Multidimensional challenges faced by family carer in providing family care “People said it was God’s punishment. So first we went to the temple.” Cultural interpretation of illness Cultural beliefs and misconceptions Multidimensional challenges faced by family carer in providing family care “The doctor only said the name of the disease. No one explained anything.” Inadequate information from professionals Need for information and education Unmet needs of family caregivers “They treat her like a task, not like a person.” Lack of individualised care Need for person-centred care for person with dementia (from the perspective of the family carer) Unmet needs of family caregivers 3. Results 3.1 Sample characteristics Person with dementia was aged between 68-81 years (Mean age: 74.29 years ± 4.43). All 14 primary family caregivers (Mean age: 57.86 years ± 12.26)who participated in the interviews completed the demographic questionnaire, summarized in Table 3. In line with the principle of information power, this sample size was considered adequate due to the depth of the data collected and the study’s focused scope [31]. Table 3: Demographic characteristics of participating family caregivers (N=14) and person with dementia (N=14) Variable Category n Family caregivers: Sex Male 3 Female 11 Age 18-35 1 36-45 2 46-55 3 56 and above 8 Mean age (yrs ± sd) 57.86 ± 12.26 Education Upto Graduate 12 Post graduate and above 2 Types of dementia family member experiencing Alzheimer’s dementia 9 Vascular dementia 3 Dementia with Lewy bodies 1 Frontotemporal dementia 1 Relationship with care recipients Wife 6 Husband 2 Daughter/Son 5 Others 1 Duration of caregiving Less than 1 year 1 2-5 years 5 More than 5 years 8 Person with dementia: Age range (years) 68-81 Mean age (years ± sd) 74.29 ± 4.43 The primary family caregivers’ varied in their experiences of caring to people with dementia. Two overarching themes were developed from the interviews: (1) Multidimensional challenges in providing family care, (2) Unmet needs of family caregivers which are described below. For each of them, a series of subthemes were identified, as illustrated in Table 4. Both themes and the underlying subthemes are described in the following sections. Table 4: Themes and Subthemes Themes Subthemes 1. Multidimensional challenges faced by a. Lack of knowledge and awareness of dementia family caregiver in providing family care b. Behavioural and psychological changes c. Cultural belief and misconception d. Stigma and negative societal attitudes 2. Unmet needs of family caregivers a. Need for information and education related to dementia b. Need for person centered care for person with dementia (from the perspective of the interviewee) c. Importance for dementia focused health care support d. Challenges in navigating care system e. Need for emotional and psychological support Multidimensional challenges in providing family care: With regard to the first overarching theme, four subthemes could be distinguished as underlying dimensions characterizing the experience of the interviewed caregivers, as detailed in the following. Lack of knowledge and awareness of dementia Caregivers show varying levels of knowledge and awareness about dementia. Some of the family caregivers have limited or no knowledge of dementia or were not even familiar with the term “dementia”. “To be honest, I had never heard the word ‘dementia’ before my mother was diagnosed. We just thought she was forgetting stuffs because she was old. We all get a bit forgetful as we age, right?” (Caregiver 6, 34 years); For many family caregivers, media and other sources were mentioned as limited or unreliable. In some cases, families learned about the condition only through their own research. “Nobody give details what dementia really was. I had to Google everything after doctor said the word.” (Caregiver 3, 50 years). Behavioural and psychological changes: Caregivers frequently reported that behavioural changes were the earliest and most distressing symptoms of dementia. These included increased aggression, wandering, hallucination, repetitive questioning and disliking previously loved activities. “My wife was a famous Rabindra Sangeet singer. She used to practice every morning with her harmonium. But now she doesn’t even know what harmonium or singing is. I’ve seen those changes. She is totally a different person now.” (Caregiver 8, 73 years); “One night, my husband was getting ready to leave the house around 2 a.m. He said he was going to work, even though he had retired many years ago. I was extremely frightened, because if this had happened on another day and what if I hadn’t even realized that he had left the house! The thought of what might have happened terrified me.” (Caregiver 10, 63 years). Many family caregivers reported that person with dementia remember their childhood stories but did not remember the recent conversations. They did not even recognise their family members and relationships. “My mother-in-low recalls me as her sister. She behaves like that. You know sometimes she wants to play with me.” (Caregiver 13, 44 years). Cultural belief and misconception: There was many cultural believes and misconception among Indian family caregivers. Some family caregivers described that their families first went to religious places when the person with dementia began to show signs of memory loss. Other also believed that this condition was God’s punishment or a result of past action (Karma), which delayed their decision to seek professional help. “I took my wife to the nearby temple first to discuss with our priest when she started behaving odd.” (Caregiver 12, 72 years); “My relatives said it was God’s punishment. My husband was cursed because he stopped recognizing family members and started talking to himself. (Caregiver 9, 61 years). However, many family caregivers initially believed the symptoms were part of normal aging. They noticed increasing forgetfulness and disorientation but did not consider these abnormal. Even in their family no one knew about dementia which led to confusion and lack of understanding. “My relatives told me not to worry, that it was normal at his age. No one talks about it like a disease. But I noticed the condition differently when he started forgetting who I was.” (Caregiver 1, 70 years). Stigma and negative societal attitudes: Many family caregivers reported that negative societal attitudes such as viewing dementia as a form of madness, shame, or a burden affected their willingness to talk about the condition or seek help. The fear of judgment or being misunderstood often led families to isolate the person living with dementia or hide the diagnosis from neighbors and extended family. “When he started being confused, people said he had gone mad. After that I and my family stopped taking him out to family events or any other social gatherings. Even I also tend to avoid discussing him with others” (Caregiver 7, 66 years). In some cases, the person with dementia and his/ her family caregiver were treated with blame, ridicule, or even avoidance, contributing to emotional distress for both the individual and the family caregiver. These attitudes not only delayed diagnosis and treatment but also deepened the family caregiver’s sense of isolation and stress. The stigma also reinforced internalised shame, making it difficult for caregivers to access support services or openly discuss their challenges. “Relatives said it was my fault. I was not taking proper care of my wife. No one understood that it’s an illness not something I can control.” (Caregiver 2, 71 years). Unmet needs of family caregivers: The second overarching theme emerging from the interviews was characterized by five subthemes as outlined in the following. Need for information and education related to dementia Caregivers consistently underlined a major gap in knowledge and educational support following the onset of dementia symptoms or diagnosis. Most family caregivers reported that they were unprepared for the complexities of the condition, including how it progresses and how best to manage challenging behaviors. A lack of structured information from healthcare providers left many family caregivers to seek answers independently, often through online searches or informal networks. “We had no idea how to handle dementia symptoms. When he started forgetting things or getting angry, we didn’t know what to do. We just kept trying different things until something worked.” (Caregiver 5, 55 years). Caregivers’ said misinformation led to ineffective or harmful practices. Family caregivers conveyed a clear need for simple and reliable educational resources not just at the point of diagnosis, but throughout the caregiving journey. Additionally, family caregivers suggested the need for public awareness initiatives to help and understand dementia and reduce stigma, which could also support early identification and intervention. “People suggested things like herbal oils, ayurvadic medicines or rituals to manage his unusual behavior. I followed their advice because I didn’t know any better process. I just wanted him to be like he was before” (Caregiver 3, 50 years); Need for person centered care Caregivers emphasised the significance of care approaches that recognise and respect the individual needs, preferences, and personalities of people living with dementia. Many family caregivers reported that healthcare services were often generic, task-focused, or medically driven, without considering the unique background, routines, and emotional needs of their family member. “No hospital was willing to admit a person with dementia. Fortunately, one private hospital accepted my husband. He becomes very distressed when his routine is disrupted, but the nurses changed everything without informing us. After that he stopped eating properly.” (Caregiver 6, 34 years). Caregivers expressed concern about lack of individualised care often led to distress for both the person with dementia and the family caregivers. Family caregivers expressed a desire for services that took into account the person’s life history, communication style, cultural background and stage of illness. They believed that when care was personalised and empathetic, it not only improved the well-being of their person with dementia but also reduced family caregivers’ stress. “My paid carer gave medicine and food, but did not speak to my mother-in-law with kindness. She was treated like a task, not a person. It broke my heart.” (Caregiver 14, 42 years); Importance for dementia focused health care support Family caregivers consistently expressed frustration with the lack of dementia specific services in both government and private hospitals. They reported that healthcare providers often lacked training to recognize or manage dementia-related symptoms, resulting in delayed diagnoses, inappropriate treatments and poor communication. “The nurse kept telling my father to 'just try to remember' things. They didn’t understand that he couldn’t. It made him more anxious.” (Caregiver 11, 53 years); Caregivers emphasised the urgent need for specialized and accessible dementia care services including clinics, trained professionals, emergency support and long-term care options to ensure better outcomes for both the person with dementia and their family carer. “We need dementia care centres closer to home. Travelling for hours to the hospital for every appointment is too hard especially with someone who’s confused and restless.” (Caregiver 1, 70 years); Challenges in navigating the care system Many family caregivers conveyed significant complications in accessing, understanding and coordinating suitable care for their family member with dementia. A lack of clear guidance, fragmented services, long waiting times and poor awareness among healthcare providers often made the care journey confusing and overwhelming. Family caregivers described feeling “lost” in the system, unsure of where to go, whom to consult or what services were available. In several cases, absence of dementia specific support at the primary care level led to repeated visits to multiple clinics or hospitals without clear answers. “I had no idea where to seek help. Local doctor said it was probably just old age and said nothing to worry about. Doctor did not offer any further advice. It took us several months to find appropriate care facility.” (Caregiver 8, 73 years); “I went from one hospital to another with my wife, did so many tests but no one said it was dementia. Only after many months we get a proper diagnosis.” (Caregiver 10, 63 years). Others reported challenges in finding inexpensive, particularly when formal services or private settings taking too much money. These barriers not only delayed diagnosis and treatment but also increased family caregiver’s stress and burden. “Private hospitals ask for so much money. I can’t afford it, so I just try to manage things myself.” (Caregiver 4, 47 years); “As I have to manage my job, my children and the care responsibility; it become very much stressful for me.” (Caregiver 13, 44 years). e. Need for emotional and psychological support Many family caregivers described that emotional burden of caring for a person with dementia as overwhelming, isolating and even sometime exhausting. They often faced high levels of stress, anxiety, sadness and helplessness, particularly as condition progressed. Family caregivers shared that there were limited or no mental health resources available specifically for them (caregivers), and they frequently lacked someone to talk to or spaces to express their feelings. “There was absolutely no preparation for what I was about to face. When those symptoms began, I didn’t realize how serious or complicated it would become. I was suddenly thrown into a situation I didn’t understand, with no guidance or support. The emotional toll was immense. Watching someone you love change so drastically without knowing why or how to help was heartbreaking. I felt overwhelmed, confused and alone. I personally felt utterly disoriented like I was trying to navigate in the dark with no direction.” (Caregiver 11, 53 years). 4. Discussion Dementia is an urgent global public health concern with its impact particularly pronounced in resourced limited settings. In many such contexts, the availability of trained care providers is insufficient to meet the needs of a rapidly increasing number of people living with dementia. Addressing this gap requires support for family and informal family caregivers who shoulder the majority of care responsibilities. These family caregivers often face multifaced challenges that place them at elevated risk for adverse health outcomes including depression, anxiety and other related health consequences [ 26 , 8 ]. This study set out to generate a comprehensive understanding of the challenges and unmet needs experienced by family caregivers of people living with dementia in two urban cities of West Bengal, India. In this country, dementia prevalence is rising but awareness, specialised services and policy support remain limited. Family members provide the vast majority of care. Yet their experiences have rarely been systematically documented. This current study specifically explored dementia family caregivers’ perspectives on both the challenges they face and the critical gaps in support, education and healthcare infrastructure. By addressing this evidence gap, this study provides essential insights for shaping responsive interventions and policies to improve dementia care and family caregivers’ well-being. The findings of the present study highlights a range of significant challenges faced by family caregivers in the process of supporting relatives living with dementia. One of the most prominent and recurrent issues was the limited knowledge and awareness about dementia. For many family caregivers the term ‘dementia’ was unfamiliar prior to their family member’s diagnosis and early symptoms such as forgetfulness, disorientation or personality changed were often misinterpreted as the normal part of aging. This finding is consistent with studies in low and middle income countries (LMICs) which show that limited dementia literacy delays recognition, diagnosis and intervention [ 34 – 36 ]. In the absence of accurate information from healthcare professionals, many family caregivers reported relying on informal or unreliable sources including unverified online material, advice from neighbours or community hearsay [ 37 , 38 ]. Such sources, while easily accessible, often perpetuated misconceptions such as attributing dementia to supernatural causes or inevitable ageing and occasionally led to ineffective or even harmful care practices. These knowledge gaps not only affected the quality of care provided but also increased family caregivers’ emotional strain, uncertainty and sense of isolation in managing the condition. Behavioural changes emerged as one of the most distressing and disruptive aspects of the caregiving experience [ 8 , 39 ]. Caregivers interviewed in the study presented here described a range of symptoms, including marked personality alterations, wandering, physical aggression, hallucinations and a pronounced loss of interest in activities that had once been deeply meaningful. These changes often unsettled the household environment, disrupted established routines and increased the emotional strain on family caregivers who frequently felt unprepared to manage such behaviours. The unpredictability of these symptoms compounded the challenges, creating a sense of constant vigilance and exhaustion. These findings are consistent with existing literature on the psychosocial impact of behavioural and psychological symptoms of dementia (BPSD), which are recognised as key drivers of caregivers’ stress and institutionalisation decisions. The persistence of earlier memories alongside severe recent memory loss as reported here reflects the neurodegenerative progression of dementia with implications for communication and relationship dynamics [ 40 , 41 ]. Cultural beliefs and misconceptions played a significant role in shaping care seeking behaviours and influencing the overall trajectory of support for individuals with dementia. In this study, some family caregivers reported that their initial response to emerging symptoms such as memory loss, disorientation or unusual behaviours was to consult religious or spiritual healers rather than medical professionals. These decisions were often rooted in the attribution of symptoms to supernatural or moral causes such as divine punishment, curses or the consequences of past actions (karma). Such interpretations are not unique to this setting; they reflect broader patterns reported in South Asian and other low and middle income countries (LMICs), where deeply ingrained cultural and spiritual frameworks can delay biomedical consultation, reinforce fatalistic attitudes and limit engagement with evidence based treatment [ 42 , 43 ]. Stigma and negative societal attitudes also emerged as powerful forces shaping the day to day experiences of family caregivers. In several cases, dementia was equated with mental instability or even moral weakness, reflecting deep-rooted misconceptions about the nature of dementia. Such perceptions often prompted families to hide the diagnosis from neighbours, friends and even extended relatives, fearing ridicule, gossip or blame for the condition. The impact of stigma extended beyond social exclusion; it also contributed to internalised shame with some family caregivers questioning their own adequacy or feeling personally responsible for dementia. This emotional burden compounded the already significant psychological strain of caregiving, intensifying feelings of anxiety, guilt and helplessness. Importantly, stigma not only delayed diagnosis and access to treatment but also shaped how family caregivers engaged or refrained from engaging with health and community services. These findings align with global literature that identifies stigma as a major barrier to dementia care across diverse cultural contexts [ 44 ]. Studies from both high-income and LMIC settings highlight how public misconceptions about dementia perpetuate social distancing and discrimination, limiting both the visibility of the condition and the availability of supportive interventions. Addressing stigma, therefore, is not only a matter of public awareness but a critical step in creating enabling environments where caregivers and people with dementia can access timely, compassionate and appropriate care without fear of judgment or exclusion [ 45 , 46 ]. This study reveals significant and interconnected challenges faced by family caregivers of people living with dementia ranging from a lack of accessible information to systemic service limitations and insufficient emotional support. The findings echo global literature that highlights caregiving as a multidimensional experience influenced by cultural, health system and psychosocial factors [ 47 ]. A consistent concern among family caregivers was the lack of structured and reliable information at the point of diagnosis and throughout the dementia care trajectory. Many family caregivers reported being unprepared for the complexities of dementia including behavioural and psychological symptoms and were often left to seek answers independently through informal networks or online sources [ 48 ]. Inadequate information provision has been documented as a common gap in dementia care worldwide contributing to family carer distress and suboptimal management strategies [ 49 ]. In this study, misinformation sometimes led to ineffective or harmful practices, such as the use of unproven herbal remedies or reliance on religious rituals. These findings highlight the need for ongoing, culturally sensitive public education to counter stigma, improve early recognition and promote evidence based care. Equally significant was the perceived absence of person-centred care in both hospital and home settings. Family caregivers frequently described services as generic, task-oriented and medically driven with minimal attention to the preferences, life histories and daily routines of the person living with dementia. Such approaches risk overlooking the unique psychosocial needs of individuals, leading to increased distress, behavioural symptoms and reduced quality of life. These accounts sharply contrast with internationally recognised best practice recommendations which emphasise person-centred care as a core principle in dementia support focusing on the individual’s values, past experiences and social context rather than solely on their disease symptoms [ 50 , 51 ]. Several family caregivers in this study also reported feeling excluded from care planning and decision-making, despite their intimate and long-standing knowledge of the person’s communication style, triggers and coping strategies. Such exclusion is not only disempowering for family caregivers but can also result in care strategies that are poorly matched to the person’s needs, increasing agitation and reducing trust in healthcare providers. Previous studies similarly highlight that the active involvement of family caregivers enhances the accuracy of clinical assessments, facilitates continuity of care and supports the delivery of interventions that are both culturally appropriate and effective [ 52 , 53 ]. Family caregivers also identified a critical shortage of dementia specific healthcare services. Both public and private facilities were defined as lacking trained professionals, appropriate diagnostic tools and emergency support for dementia. This reflects a broader shortage of specialist dementia services in low and middle income countries (LMICs), where general health providers may lack the skills to differentiate dementia from normal ageing or other conditions [ 54 ]. Family caregivers in this study advocated for accessible, localised dementia care centres, trained personnel and dedicated helplines which could reduce delays in diagnosis and improve care continuity. Navigating the care system emerged as another major challenge. Family caregivers described fragmented services, poor coordination, long waiting times and unclear referral pathways, resulting in repeated consultations and delayed diagnoses. Recent syntheses show that weak care coordination at the primary care level is widespread and undermines timely, appropriate care transitions, especially for people with complex needs such as cognitive impairment [ 55 , 56 ]. The economic burden was an additional barrier with many family caregivers unable to afford private services leading to reliance on untrained informal care. These findings are consistent with evidence that fragmented health systems and financial constraints exacerbate family carer burden and delay treatment [ 57 , 58 ]. Finally, the study highlights the emotional and psychological strain of caregiving. Family caregivers described feelings of isolation, sadness and helplessness, particularly as the condition progressed and functional decline intensified. The lack of mental health support specifically for family caregivers left many without spaces to share their experiences or seek counselling. Prior research indicates that such emotional strain, if unaddressed, can contribute to burnout, depression and diminished caregiving capacity [ 59 , 60 ]. Establishing peer support groups, respite care and accessible counselling could mitigate these impacts. These findings echo earlier observations [ 61 , 62 ] while highlighting the urgent need for family carer-inclusive policies and scalable interventions. Addressing the psychological well-being of family caregivers is not only a matter of individual support but a cornerstone of sustaining effective and long-term care systems. All the findings highlighted above should be interpreted in light of some limitation characterized this study. A main aspect to be considered in this regard concerns the fact that this investigation was conducted among caregivers from two urban cities in India. As a result, the findings may not be generalizable to caregivers residing in rural areas, where socio-economic conditions and healthcare infrastructure differ significantly from urban contexts. Caregivers in rural settings often face unique challenges, such as reduced access to accurate information about dementia, limited availability of specialized healthcare services and fewer support systems. These factors could influence both their understanding of the condition and their caregiving experiences in ways not captured by this study. 5. conclusion Despite the limitations indicated above, this study contributes in different, innovative and relevant ways to the existing body of dementia research. First, it addresses a significant gap by focusing on the experiences and needs of dementia caregivers in an Indian context which is characterized by a population that remains underrepresented in global and regional dementia literature. In countries like India, where dementia prevalence is rising but formal care systems are still under-developed, such context-specific research is critically needed. The study offers culturally and socially grounded insights that reflect the realities faced by family caregivers in low and middle income settings, thus providing information that is both locally relevant and globally significant. In addition, the selection of participants from an NGO adds practical value to the findings. Unlike hospital-based studies, this community based setting allows for the exploration of caregiving experiences in environments where family caregivers are likely to rely on limited, informal or non-traditional support systems. This makes the findings particularly useful for NGOs, community health workers and policymakers designing grassroots interventions. Futhermore, the study prioritizes the voices and lived experiences of family caregivers, offering qualitative depth that enriches our understanding of the emotional, informational, and practical challenges they face. By exploring family caregivers’ perceptions and needs directly, the study contributes to a more person-centered and empathetic framework for dementia care. Moreover, the methodological approach- involving in-depth interviews provides nuanced data that go beyond quantitative metrics to capture the complexity of caregiving in the Indian socio-cultural context. Lastly, the study lays important groundwork for future research by identifying key areas where family caregivers lack support, such as limited access to information, services, and emotional care. These findings can inform further studies across diverse settings, including rural populations, and among family caregivers accessing care through government, private, or traditional systems, as well as those who have not accessed any services. In doing so, the study contributes meaningfully to both academic and the practical development of family carer support systems in India and similar contexts. Declarations Acknowledgments: The authors would like to express their appreciation to the research participants for their essential contributions to our research. They would also like to express their gratitude to the University Grants Commission (UGC) for providing financial help in the form of full-time Doctoral Fellowships (UGC-NET-JRF). The organization made no additional contributions to the study’s execution, data analysis, or interpretation. We are grateful to the ARDSI, Kolkata for their valuable contribution in this study. This work was academically partially supported by the Italian Ministry of Health to IRCCS INRCA. Authors’ contributions: IB: conceptualization, data collection, formal analysis, investigation, methodology, resources, software, validation, visualization, writing- original draft, review & editing. SM: conceptualization, project administration, visualization, supervision, writing- Original draft editing & review. GL- Original draft edit & review. JvdS- Original draft edit & review. PM- review. Funding The study was conducted on a Doctoral fellowship grant from the University Grant Commission. Availability of data and materials All data analysed during this study can be obtained from the corresponding author upon reasonable request. Ethics approval and consent to participate This study was conducted in accordance with the principles of the Declaration of Helsinki. The Institutional Review Board of Indian Statistical Institute in Kolkata reviewed the study protocol, participant information documents and the applicable informed consent form and provided an ethical clearance certificate (ISI ethics clearance no: ISI-IEC/2018/10/02B). Informed consent was obtained from each of the participants prior to data collection. Consent for publication Not applicable. Competing interests The authors declare no competing interests. References Nicola Veronese A, Koyanagi LJ, Dominguez S, Maggi P, Soysal F, Bolzetta L, Vernuccio L, Smith D, Matranga, Mario Barbagallo. Multimorbidity increases the risk of dementia: a 15 year follow-up of the SHARE study. Age Ageing. April 2023;52(4):afad052. https://doi.org/10.1093/ageing/afad052 . Alzheimer’s Disease International. World Alzheimer Report 2018. The state of the art of dementia research: New frontiers. London: Alzheimer’s Disease International; 2018. Patterson C. World Alzheimer report 2018. 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The Impact of Caregiver Affiliate Stigma on the Psychosocial Well-Being of Caregivers of Individuals with Neurodegenerative Disorders: A Scoping Review. Healthcare , 12 (19), 1957. https://doi.org/10.3390/healthcare12191957 Hu Y-L, Chang C-C, Lee C-H, Liu C-H, Chen Y-J, Su J-A, Lin C-Y, Griffiths MD. Associations between Affiliate Stigma and Quality of Life among Caregivers of Individuals with Dementia: Mediated Roles of Caregiving Burden and Psychological Distress. Asian Journal of Social Health and Behavior 6(2):p 64–71, Apr–Jun. 2023. 10.4103/shb.shb_67_23 Regan JL. Ethnic minority, young onset, rare dementia type, depression: a case study of a Muslim male accessing UK dementia health and social care services. Dementia. 2016;15:702–20. Prince M, Wimo A, Guerchet M, Ali GC, Wu YT, Prina M. World Alzheimer Report 2016: Improving healthcare for people living with dementia. Alzheimer’s Disease International; 2016. Jagoda T, Dharmaratne S, Rathnayake S. Informal caregivers’ information needs in managing behavioural and psychological symptoms of people with dementia and related mHealth applications: a systematic integrative review to inform the design of an mHealth application. BMJ Open. 2023;13:e069378. 10.1136/bmjopen-2022-069378 . Wijesinghe S, Mukaetova-Ladinska EB. Exploration of Dementia Help Seeking Behaviours Amongst UK South Asian Communities: A Systematic Review. OBM Geriatr. 2024;8(2):279. 10.21926/obm.geriatr.2402279 . Franco BB, Boscart VM, Elliott J, Dupuis S, Loiselle L, Lee L, Heckman GA. I Hope That the People Caring for Me Know About Me: Exploring Person-Centred Care and the Quality of Dementia Care. Can Geriatr journal: CGJ. 2022;25(4):336–46. https://doi.org/10.5770/cgj.25.597 . Kim SK, Park M. Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis. Clin Interv Aging. 2017;12:381–97. https://doi.org/10.2147/CIA.S117637 . Lawson L, Cooper M, Tolley C, et al. 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Int J Geriatr Psychiatry. 2025;40(7):e70129. https://doi.org/10.1002/gps.70129 . Sideman AB, Ma M, Hernandez de Jesus A, et al. Primary Care Practitioner Perspectives on the Role of Primary Care in Dementia Diagnosis and Care. JAMA Netw Open. 2023;6(9):e2336030. 10.1001/jamanetworkopen.2023.36030 . Sorrentino M, Fiorilla C, Mercogliano M, Stilo I, Esposito F, Moccia M, Lavorgna L, Salvatore E, Sormani MP, Majeed A, Triassi M, Palladino R. Barriers for access and utilization of dementia care services in Europe: a systematic review. BMC Geriatr. 2025;25(1):162. https://doi.org/10.1186/s12877-025-05805-z . Wimo A, Guerchet M, Ali GC, Wu YT, Prina AM, Winblad B, Jönsson L, Liu Z, Prince M. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimer's Dement J Alzheimer's Assoc. 2017;13(1):1–7. https://doi.org/10.1016/j.jalz.2016.07.150 . White J, Falcioni D, Barker R, Bajic-Smith J, Krishnan C, Mansfield E, Hullick C. 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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-9226253","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":627474291,"identity":"50a6d87a-6fe0-4b0f-a67e-07033f2e8723","order_by":0,"name":"IPSITA BASU","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA90lEQVRIiWNgGAWjYBACNiA+AMQJDAcYGxh4KoBMZuYGwloOwLWcAWlhxK8FDCBagAzeNhCXgBY+6faHhz/U3MnjO8Dc9uDtvNpo/naglh8V23A7TOaMwYEDx54VSx5gbDecu+147ozDjA2MPWdu49YikQP0C9vhxA0HGNukebcdy20AamFmbMOnJf3BgQP/YFrmHMudT1hLgsGBg20wLQ01uRsIagH55Wzfs8SZhxnbJOccO5C7EajlID6/yM9uf/yh4tudxL7j7c8k3tTU5c47f/jggx8VuLUwSIDJA8AYBDMOw7h4gASqmjq8ikfBKBgFo2BkAgDEHGi8pTl72QAAAABJRU5ErkJggg==","orcid":"","institution":"IRCCS INRCA—National Institute of Health and Science on Ageing","correspondingAuthor":true,"prefix":"","firstName":"IPSITA","middleName":"","lastName":"BASU","suffix":""},{"id":627474293,"identity":"94815cf5-eec4-4979-bbc3-923ad22a9608","order_by":1,"name":"Susmita Mukhopadhyay","email":"","orcid":"","institution":"Indian Statistical Institute","correspondingAuthor":false,"prefix":"","firstName":"Susmita","middleName":"","lastName":"Mukhopadhyay","suffix":""},{"id":627474294,"identity":"a3cbffc0-bb9a-401a-a440-f8d6fe892453","order_by":2,"name":"Giovanni Lamura","email":"","orcid":"","institution":"IRCCS INRCA—National Institute of Health and Science on Ageing","correspondingAuthor":false,"prefix":"","firstName":"Giovanni","middleName":"","lastName":"Lamura","suffix":""},{"id":627474295,"identity":"c6fa9c2f-edda-4399-9715-c20fe6f85baf","order_by":3,"name":"Jenny T. van der Steen","email":"","orcid":"","institution":"Leiden University Medical Center","correspondingAuthor":false,"prefix":"","firstName":"Jenny","middleName":"T. van der","lastName":"Steen","suffix":""},{"id":627474296,"identity":"a51b9384-6935-4b3b-b6b4-c53e1b64e760","order_by":4,"name":"Premananda Bharati","email":"","orcid":"","institution":"Indian Statistical Institute","correspondingAuthor":false,"prefix":"","firstName":"Premananda","middleName":"","lastName":"Bharati","suffix":""}],"badges":[],"createdAt":"2026-03-25 18:09:29","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9226253/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9226253/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":108678686,"identity":"13dbab1a-c966-42de-8b22-579b9b5960d4","added_by":"auto","created_at":"2026-05-07 08:58:26","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":379418,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9226253/v1/ead26acf-42f8-4415-8fb4-80efa1064081.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Behind the closed doors: A qualitative study to explore the silent battle of dementia family caregivers in the Indian context","fulltext":[{"header":"1. Background","content":"\u003cp\u003eDementia has become one of the most pressing global public health challenges, placing substantial burdens on individuals, families, healthcare systems and societies. It affects an estimated 47.5\u0026nbsp;million individuals globally, with projections indicating an increase to nearly 135\u0026nbsp;million cases by 2050, largely driven by population ageing [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. This substantial and accelerating rise in prevalence presents significant challenges for geriatric medicine, given the high burden of multi-morbidity, functional decline and complex care needs among older adults living with dementia. These trends underscore the necessity for robust epidemiological evidence and the development of integrated, person-centered models of care within ageing health systems [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Their number is growing mostly in low and middle income countries where around two-thirds of people are living with dementia [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. A substantial portion of individuals living with dementia reside in India where 4.1\u0026nbsp;million people are affected by this condition [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e], a number that is expected to triple by 2050, making this country home to the highest number of family caregivers globally [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. In most cases, care is provided by family members or other unpaid, untrained caregivers who often receive little or no formal support, particularly in low and middle income countries [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. In developing countries like India, family caregivers play a vital role in supporting people with dementia [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. The responsibility for dementia care typically falls entirely on the family [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Family caregivers frequently encounter multiple stressors including time constraints, behavioural changes in the person with dementia and financial pressures, all of which can be difficult to manage alongside their work and other family responsibilities [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Such challenges often contribute to serious health consequences for family caregivers themselves including depression, anxiety and various physical health problems [\u003cspan additionalcitationids=\"CR9\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. However, they often lack access to essential dementia specific services, reliable information about the condition and adequate healthcare support [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Providing care is especially demanding as dementia progresses, with increased cognitive and functional decline and the emergence of challenging behaviors [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Family caregivers frequently experience significant financial strain, physical exhaustion, emotional distress and social isolation [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Recent studies from India further emphasize these burdens [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAs dementia progresses to moderate and severe stages, progressive neuro-pathological changes give rise to more visible cognitive and behavioural symptoms, such as disorientation, personality changes and difficulties with basic activities of daily living. These changes are compounded by heightened vulnerability to comorbidities including falls, infections, malnutrition and frailty which further exacerbate care needs and accelerate loss of independence [\u003cspan additionalcitationids=\"CR19 CR20\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Consequently, people living with dementia experience a trajectory of escalating dependence on family members, unpaid caregivers and health systems, underscoring the urgent need for dementia-informed policies, long-term care planning and culturally sensitive interventions [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite the pivotal role family caregivers play in the dementia care pathway, their experiences, challenges, and unmet needs remain largely overlooked in policy, practice and research. In India, the number of people living with dementia is increasing, however, awareness of dementia remains limited, diagnostic services are inadequate and persistent stigma continues to influence health-seeking behaviours [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Limited dementia literacy frequently results in delayed recognition of symptoms, misattribution of cognitive decline to normal ageing and the prioritisation of cultural or spiritual explanations over biomedical interpretations [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. These misconceptions can delay diagnosis and access to appropriate care, exacerbating the challenges experienced by both the person with dementia and their carer. In addition, family caregivers commonly report significant emotional distress associated with behavioural and psychological symptoms of dementia (BPSD) such as aggression, wandering, disinhibition, hallucinations and sleep disturbances. Managing these behaviours is often cited as the most stressful aspect of caregiving, contributing to high levels of burden, anxiety and depression among family caregivers [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Another key issue is the limited use of person-centred care approaches within current services. International guidelines underscore the importance of care that reflects individuals\u0026rsquo; personal histories, cultural backgrounds, preferences and psychosocial needs, rather than an exclusive focus on biomedical symptoms [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Yet in many Indian settings, dementia care remains largely task-based, medically focused and insufficiently responsive to individual needs. Family caregivers often report exclusion from decision-making, despite their close knowledge of the person\u0026rsquo;s behaviours, routines and communication patterns [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. This mismatch between care provision and lived needs contributes to increased distress, behavioural difficulties and reduced satisfaction with care.\u003c/p\u003e \u003cp\u003eIn light of these complexities, there is a clear need for research that foregrounds the lived experiences of family caregivers, particularly within socio-cultural contexts where stigma, limited awareness and structural constraints significantly shape the caregiving journey. Although the global literature increasingly documents the burdens faced by family caregivers, substantial gaps remain in evidence from South Asian settings, especially urban Indian contexts undergoing rapid demographic and social transitions [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Gaining insight into family caregivers\u0026rsquo; perspectives is critical for informing culturally responsive interventions, strengthening health system capacity and developing policies that support both effective dementia care and family carer well-being. This study responds to this gap through an in-depth examination of the multidimensional challenges and unmet needs of family caregivers of people living with dementia in urban cities in West Bengal, India. Focusing on family caregivers\u0026rsquo; own narratives, the study provides critical insights into how knowledge gaps, behavioural changes, cultural beliefs, stigma, systemic barriers and emotional burdens interact to shape the caregiving experience. These findings add to the growing evidence base on dementia in low and middle income countries and highlight the urgent need for comprehensive, community-based and culturally informed strategies to support both people living with dementia and their families. Strengthening support for family caregivers is essential not only for improving quality of life but also for developing sustainable dementia care systems in the context of India\u0026rsquo;s rapidly ageing population. With these backdrops, the present study attempts to understand the multidimensional challenges faced by family caregivers of people living with dementia and to identify the unmet needs of family caregivers.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 Study design\u003c/h2\u003e \u003cp\u003eA descriptive qualitative research design was employed to comprehensively describe the phenomenon under investigation, in line with the study\u0026rsquo;s objective of examining multidimensional challenges and unmet needs of informal family caregivers. This methodological approach is particularly appropriate as it facilitates rich, contextually grounded insights into participants\u0026rsquo; experiences, perceptions, and practices, without restriction by a priori theoretical assumptions. The flexibility inherent in descriptive qualitative research is critical for capturing the complexity of everyday challenges and for identifying unmet needs that have practical relevance. On the background of these conditions, the qualitative approached adopted in this study has been based on semi-structured interviews with informal primary family caregivers who take care their family member with dementia in West Bengal, India.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2 Participant Recruitment\u003c/h2\u003e \u003cp\u003eWe employed purposive sampling, guided by the principle of information power [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e], to ensure a diverse sample of participants. The study targets a specific group of informal primary family caregivers within a defined context of dementia care in primary care settings. Given this narrow focus, the concept of information power supports the use of a smaller sample size. We estimated a sample of up to 15 participants, based on the research aim, the characteristics of the participant group, the adopted methods and the planned analytical approach [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Participants were recruited through the organization \u0026ldquo;Alzheimer\u0026rsquo;s and Related Disorder Society of India (ARDSI) - Calcutta Chapter, Kolkata\u0026rdquo;, West Bengal adopting snowball sampling approach. At first the research team made contact with participants over telephone with the help of a member of the ARDSI, which allowed to produce a list of willing participants was made. Those who agreed to participate were approached by a member of the research team (IB) and fully informed about the purpose of the study and informed consent was obtained from each participant before the interview, which was administered at willing participants\u0026rsquo; residence following their convenience. We included 14 primary family caregivers identified as the relatives most involved in assisting person living with dementia in their day-to-day life. While aiming to be as inclusive as possible, we excluded professional caregivers and those who could not speak Bengali, Hindi and English.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3 Data collection\u003c/h2\u003e \u003cp\u003eInterviews were conducted using a semi-structured interview guide collaboratively developed by the research team (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e), informed by a descriptive qualitative methodology with phenomenological underpinnings. The interview guide was designed to elicit rich descriptions of participants\u0026rsquo; lived experiences, perceptions and practices related to the phenomenon of interest, while allowing flexibility to pursue issues raised by participants. Prior to data collection, the guide was pilot tested with five participants to assess clarity, relevance and flow and minor refinements were made accordingly. All interviews were conducted by a single trained researcher (IB), who is multilingual and fluent in Bengali, Hindi and English. IB and SM, both read all transcript and hear audio-recordings. This facilitated interviewing participants in their preferred language and supported the elicitation of nuanced, culturally grounded accounts of their experiences. Interviews were conducted face to face in participants\u0026rsquo; homes to promote comfort, rapport and openness, consistent with phenomenological approaches that prioritize naturalistic settings. Interviews lasted between 60 and 120 minutes, allowing sufficient time for in-depth exploration of participants\u0026rsquo; experiences.\u003c/p\u003e \u003cp\u003ePrior to commencing each interview, participants were provided with detailed information about the study aims, the interview process and their rights including confidentiality and voluntary participation. Basic demographic information was collected to contextualize participants\u0026rsquo; accounts. With participants\u0026rsquo; permission, all interviews were audio recorded to ensure accurate capture of participants\u0026rsquo; narratives. Recordings were transcribed verbatim and interviews conducted in languages other than English were translated into English during transcription. To enhance methodological rigour and credibility, a second researcher (SM) independently checked the transcripts against the original audio recordings to verify accuracy and consistency. This process supported faithful representation of participants\u0026rsquo; voices, which is central to descriptive qualitative and phenomenological inquiry.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eInterview Guide\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo.\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInterview questions\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCan you describe your role as a family carer for your relative living with dementia?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHow did you first notice changes in your family member, and how did you understand these changes at that time?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat challenges do you face in providing day-to-day care for your family member with dementia?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHow do behavioural and psychological changes in your family member affect you and your family life?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat kinds of support (formal or informal) are currently available to you?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat difficulties have you faced in accessing healthcare or dementia-related services?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHow do cultural beliefs, family expectations or societal attitudes influence your caregiving experience?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat additional support or resources do you feel would help you in your caregiving role?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4 Data analysis\u003c/h2\u003e \u003cp\u003eAll interview transcripts were imported into NVivo version 14 [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e] to support systematic data management and analysis. Data were analysed using a descriptive qualitative approach informed by phenomenological principles, with the aim of capturing and interpreting participants\u0026rsquo; lived experiences and meanings related to the phenomenon of interest. Analysis was conducted by two multilingual researchers (IB and SM), both fluent in Bengali, Hindi and English. Their cultural familiarity with Indian sociocultural norms, family structures and caregiving practices contributed important contextual insight, enabling a nuanced and culturally sensitive interpretation of the data while remaining grounded in participants\u0026rsquo; accounts.\u003c/p\u003e \u003cp\u003eThe analytic process followed the six-phase reflexive thematic analysis framework described by Braun and Clarke (2021) [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. First, both researchers engaged in repeated, immersive reading of the transcripts to achieve in-depth familiarisation with the data. Second, initial codes were generated inductively across the dataset, staying close to participants\u0026rsquo; language and experiential descriptions. Third, codes were examined and clustered into potential themes that reflected shared patterns of meaning across participants\u0026rsquo; narratives. Fourth, these preliminary themes were iteratively reviewed and refined through comparison with the coded data and the full dataset to ensure coherence, distinctiveness, and alignment with the study aims. Example of the analytical process on which these steps were based are illustrated in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003eIn the following fifth phase, themes were clearly defined and named to capture their essence and analytic significance. Finally, an interpretive narrative was developed, supported by illustrative data extracts, to produce the final analytic report. To enhance analytic rigour and reflexivity, each researcher initially coded the transcripts independently. Rather than seeking inter-coder reliability, differences in interpretation were discussed during regular research team meetings, fostering reflexive dialogue and collaborative sense-making. This process allowed researchers to critically examine their assumptions, disciplinary perspectives and cultural positioning, which is consistent with reflexive thematic analysis and phenomenologically informed qualitative inquiry.\u003c/p\u003e \u003cp\u003eTo ensure confidentiality and protect participant anonymity, each participant was assigned a unique identification (ID) number, which was used consistently throughout data management, analysis, and reporting. Selected quotations presented in the findings were translated from Bengali into English and are attributed only by participant ID.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eExamples of the analytical process followed by this study\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eData extraction\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInitial code\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSubtheme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTheme\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ldquo;I had never heard the word dementia before my mother was diagnosed. We thought it was just old age.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLimited knowledge of dementia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eLack of knowledge and awareness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMultidimensional challenges faced by family carer in providing family care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ldquo;When he became aggressive and started wandering at night, I felt scared and helpless.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDistress due to behavioural changes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBehavioural and psychological symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMultidimensional challenges faced by family carer in providing family care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ldquo;People said it was God\u0026rsquo;s punishment. So first we went to the temple.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCultural interpretation of illness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCultural beliefs and misconceptions\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMultidimensional challenges faced by family carer in providing family care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ldquo;The doctor only said the name of the disease. No one explained anything.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInadequate information from professionals\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNeed for information and education\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUnmet needs of family caregivers\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ldquo;They treat her like a task, not like a person.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLack of individualised care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNeed for person-centred care for person with dementia (from the perspective of the family carer)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eUnmet needs of family caregivers\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"3. Results","content":"\u003cp\u003e\u003cstrong\u003e3.1 Sample characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePerson with dementia was aged between 68-81 years (Mean age: 74.29 years \u003cstrong\u003e\u0026plusmn; \u003c/strong\u003e4.43). All 14 primary family caregivers (Mean age: 57.86 years \u003cstrong\u003e\u0026plusmn; \u003c/strong\u003e12.26)who participated in the interviews completed the demographic questionnaire, summarized in Table 3. In line with the principle of information power, this sample size was considered adequate due to the depth of the data collected and the study\u0026rsquo;s focused scope [31]. \u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3: Demographic characteristics of participating family caregivers (N=14) and person with dementia (N=14)\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"624\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCategory\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003en\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFamily caregivers:\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSex\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e3 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e11 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e18-35\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e1 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e36-45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e2 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e46-55\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e3 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e56 and above\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e8 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMean age (yrs \u0026plusmn; sd)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 416px;\"\u003e\n \u003cp\u003e57.86 \u0026plusmn; 12.26\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eUpto Graduate\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e12 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003ePost graduate and above\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e2 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTypes of dementia family \u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003emember experiencing\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eAlzheimer\u0026rsquo;s dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e9 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eVascular dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eDementia with Lewy bodies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e1 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eFrontotemporal dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e1 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelationship with care recipients\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eWife\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e6 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eHusband\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e2 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eDaughter/Son\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e5 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eOthers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e1 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDuration of caregiving \u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eLess than 1 year\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e1 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e2-5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e5 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003eMore than 5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e8 \u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePerson with dementia:\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge range (years)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e68-81\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eMean age (years \u0026plusmn; sd)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \u003cp\u003e74.29 \u003cstrong\u003e\u0026plusmn; \u003c/strong\u003e4.43\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 208px;\"\u003e\n \n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eThe primary family caregivers\u0026rsquo; varied in their experiences of caring to people with dementia. Two overarching themes were developed from the interviews: (1) Multidimensional challenges in providing family care, (2) Unmet needs of family caregivers which are described below. For each of them, a series of subthemes were identified, as illustrated in Table 4. Both themes and the underlying subthemes are described in the following sections.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4: Themes and Subthemes\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eThemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSubthemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e1. Multidimensional challenges faced by \u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ea. Lack of knowledge and awareness of dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003efamily caregiver in providing family care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003eb. Behavioural and psychological changes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ec. Cultural belief and misconception\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ed. Stigma and negative societal attitudes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e2. Unmet needs of family caregivers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ea. Need for information and education related to dementia\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003eb. Need for person centered care for person with dementia (from the perspective of the interviewee)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ec. Importance for dementia focused health care support\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ed. Challenges in navigating care system\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 294px;\"\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 330px;\"\u003e\n \u003cp\u003ee. Need for emotional and psychological support\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003col\u003e\n\u003cli\u003e\u003cstrong\u003eMultidimensional challenges in providing family care:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eWith regard to the first overarching theme, four subthemes could be distinguished as underlying dimensions characterizing the experience of the interviewed caregivers, as detailed in the following. \u003c/p\u003e\n\u003col style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eLack of knowledge and awareness of dementia\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eCaregivers show varying levels of knowledge and awareness about dementia. Some of the family caregivers have limited or no knowledge of dementia or were not even familiar with the term \u0026ldquo;dementia\u0026rdquo;.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;To be honest, I had never heard the word \u0026lsquo;dementia\u0026rsquo; before my mother was diagnosed. We just thought she was forgetting stuffs because she was old. We all get a bit forgetful as we age, right?\u0026rdquo; (Caregiver 6, 34 years);\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor many family caregivers, media and other sources were mentioned as limited or unreliable. In some cases, families learned about the condition only through their own research.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Nobody give details what dementia really was. I had to Google everything after doctor said the word.\u0026rdquo; (Caregiver 3, 50 years).\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"2\" style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eBehavioural and psychological changes:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eCaregivers frequently reported that behavioural changes were the earliest and most distressing symptoms of dementia. These included increased aggression, wandering, hallucination, repetitive questioning and disliking previously loved activities.\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My wife was a famous Rabindra Sangeet singer. She used to practice every morning with her harmonium. But now she doesn\u0026rsquo;t even know what harmonium or singing is. I\u0026rsquo;ve seen those changes. She is totally a different person now.\u0026rdquo; (Caregiver 8, 73 years);\u003c/em\u003e\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003e\u0026ldquo;One night, my husband was getting ready to leave the house around 2 a.m. He said he was going to work, even though he had retired many years ago. I was extremely frightened, because if this had happened on another day and what if I hadn\u0026rsquo;t even realized that he had left the house! The thought of what might have happened terrified me.\u0026rdquo; (Caregiver 10, 63 years).\u003c/em\u003e\u003c/p\u003e\n\n\u003cp\u003eMany family caregivers reported that person with dementia remember their childhood stories but did not remember the recent conversations. They did not even recognise their family members and relationships.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My mother-in-low recalls me as her sister. She behaves like that. You know sometimes she wants to play with me.\u0026rdquo; (Caregiver 13, 44 years).\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"3\" style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eCultural belief and misconception:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThere was many cultural believes and misconception among Indian family caregivers. Some family caregivers described that their families first went to religious places when the person with dementia began to show signs of memory loss. Other also believed that this condition was God\u0026rsquo;s punishment or a result of past action (Karma), which delayed their decision to seek professional help.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I took my wife to the nearby temple first to discuss with our priest when she started behaving odd.\u0026rdquo; (Caregiver 12, 72 years);\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My relatives said it was God\u0026rsquo;s punishment. My husband was cursed because he stopped recognizing family members and started talking to himself. (Caregiver 9, 61 years).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHowever, many family caregivers initially believed the symptoms were part of normal aging. They noticed increasing forgetfulness and disorientation but did not consider these abnormal. Even in their family no one knew about dementia which led to confusion and lack of understanding.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My relatives told me not to worry, that it was normal at his age. No one talks about it like a disease. But I noticed the condition differently when he started forgetting who I was.\u0026rdquo; (Caregiver 1, 70 years).\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"4\"\u003e\n\u003cli\u003e\u003cstrong\u003eStigma and negative societal attitudes:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eMany family caregivers reported that negative societal attitudes such as viewing dementia as a form of madness, shame, or a burden affected their willingness to talk about the condition or seek help. The fear of judgment or being misunderstood often led families to isolate the person living with dementia or hide the diagnosis from neighbors and extended family.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;When he started being confused, people said he had gone mad. After that I and my family stopped taking him out to family events or any other social gatherings. Even I also tend to avoid discussing him with others\u0026rdquo; (Caregiver 7, 66 years).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn some cases, the person with dementia and his/ her family caregiver were treated with blame, ridicule, or even avoidance, contributing to emotional distress for both the individual and the family caregiver. These attitudes not only delayed diagnosis and treatment but also deepened the family caregiver\u0026rsquo;s sense of isolation and stress. The stigma also reinforced internalised shame, making it difficult for caregivers to access support services or openly discuss their challenges.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Relatives said it was my fault. I was not taking proper care of my wife. No one understood that it\u0026rsquo;s an illness not something I can control.\u0026rdquo; (Caregiver 2, 71 years).\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"2\"\u003e\n\u003cli\u003e\u003cstrong\u003eUnmet needs of family caregivers:\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThe second overarching theme emerging from the interviews was characterized by five subthemes as outlined in the following. \u003c/p\u003e\n\u003col style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eNeed for information and education related to dementia\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eCaregivers consistently underlined a major gap in knowledge and educational support following the onset of dementia symptoms or diagnosis. Most family caregivers reported that they were unprepared for the complexities of the condition, including how it progresses and how best to manage challenging behaviors. A lack of structured information from healthcare providers left many family caregivers to seek answers independently, often through online searches or informal networks.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We had no idea how to handle dementia symptoms. When he started forgetting things or getting angry, we didn\u0026rsquo;t know what to do. We just kept trying different things until something worked.\u0026rdquo; (Caregiver 5, 55 years).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCaregivers\u0026rsquo; said misinformation led to ineffective or harmful practices. Family caregivers conveyed a clear need for \u003cstrong\u003esimple and reliable educational resources\u003c/strong\u003e not just at the point of diagnosis, but throughout the caregiving journey. Additionally, family caregivers suggested the need for \u003cstrong\u003epublic awareness initiatives\u003c/strong\u003eto help and understand dementia and reduce stigma, which could also support early identification and intervention.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;People suggested things like herbal oils, ayurvadic medicines or rituals to manage his unusual behavior. I followed their advice because I didn\u0026rsquo;t know any better process. I just wanted him to be like he was before\u0026rdquo; (Caregiver 3, 50 years);\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"2\" style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eNeed for person centered care\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\n\u003cp\u003eCaregivers emphasised the significance of care approaches that recognise and respect the individual needs, preferences, and personalities of people living with dementia. Many family caregivers reported that healthcare services were often generic, task-focused, or medically driven, without considering the unique background, routines, and emotional needs of their family member.\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003e\u0026ldquo;No hospital was willing to admit a person with dementia. Fortunately, one private hospital accepted my husband. He becomes very distressed when his routine is disrupted, but the nurses changed everything without informing us. After that he stopped eating properly.\u0026rdquo; (Caregiver 6, 34 years).\u003c/em\u003e\u003c/p\u003e\n\n\u003cp\u003eCaregivers expressed concern about lack of individualised care often led to distress for both the person with dementia and the family caregivers. Family caregivers expressed a desire for services that took into account the person\u0026rsquo;s life history, communication style, cultural background and stage of illness. They believed that when care was personalised and empathetic, it not only improved the well-being of their person with dementia but also reduced family caregivers\u0026rsquo; stress.\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My paid carer gave medicine and food, but did not speak to my mother-in-law with kindness. She was treated like a task, not a person. It broke my heart.\u0026rdquo; (Caregiver 14, 42 years);\u003c/em\u003e\u003c/p\u003e\n\n\u003col start=\"3\" style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eImportance for dementia focused health care support\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\n\u003cp\u003eFamily caregivers consistently expressed frustration with the lack of dementia specific services in both government and private hospitals. They reported that healthcare providers often lacked training to recognize or manage dementia-related symptoms, resulting in delayed diagnoses, inappropriate treatments and poor communication.\u003c/p\u003e\n\n\u003cp\u003e\u003cem\u003e\u0026ldquo;The nurse kept telling my father to \u0026apos;just try to remember\u0026apos; things. They didn\u0026rsquo;t understand that he couldn\u0026rsquo;t. It made him more anxious.\u0026rdquo; (Caregiver 11, 53 years);\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCaregivers emphasised the urgent need for specialized and accessible dementia care services including clinics, trained professionals, emergency support and long-term care options to ensure better outcomes for both the person with dementia and their family carer.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;We need dementia care centres closer to home. Travelling for hours to the hospital for every appointment is too hard especially with someone who\u0026rsquo;s confused and restless.\u0026rdquo; (Caregiver 1, 70 years);\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"4\" style=\"list-style-type: lower-alpha;\"\u003e\n\u003cli\u003e\u003cstrong\u003eChallenges in navigating the care system\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eMany family caregivers conveyed significant complications in accessing, understanding and coordinating suitable care for their family member with dementia. A lack of clear guidance, fragmented services, long waiting times and poor awareness among healthcare providers often made the care journey confusing and overwhelming. Family caregivers described feeling \u0026ldquo;lost\u0026rdquo; in the system, unsure of where to go, whom to consult or what services were available. In several cases, absence of dementia specific support at the primary care level led to repeated visits to multiple clinics or hospitals without clear answers.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I had no idea where to seek help. Local doctor said it was probably just old age and said nothing to worry about. Doctor did not offer any further advice. It took us several months to find appropriate care facility.\u0026rdquo; (Caregiver 8, 73 years);\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I went from one hospital to another with my wife, did so many tests but no one said it was dementia. Only after many months we get a proper diagnosis.\u0026rdquo; (Caregiver 10, 63 years).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOthers reported challenges in finding inexpensive, particularly when formal services or private settings taking too much money. These barriers not only delayed diagnosis and treatment but also increased family caregiver\u0026rsquo;s stress and burden.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Private hospitals ask for so much money. I can\u0026rsquo;t afford it, so I just try to manage things myself.\u0026rdquo; (Caregiver 4, 47 years);\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;As I have to manage my job, my children and the care responsibility; it become very much stressful for me.\u0026rdquo; (Caregiver 13, 44 years).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ee. Need for emotional and psychological support\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMany family caregivers described that emotional burden of caring for a person with dementia as overwhelming, isolating and even sometime exhausting. They often faced high levels of stress, anxiety, sadness and helplessness, particularly as condition progressed. Family caregivers shared that there were limited or no mental health resources available specifically for them (caregivers), and they frequently lacked someone to talk to or spaces to express their feelings.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;There was absolutely no preparation for what I was about to face. When those symptoms began, I didn\u0026rsquo;t realize how serious or complicated it would become. I was suddenly thrown into a situation I didn\u0026rsquo;t understand, with no guidance or support. The emotional toll was immense. Watching someone you love change so drastically without knowing why or how to help was heartbreaking. I felt overwhelmed, confused and alone. I personally felt utterly disoriented like I was trying to navigate in the dark with no direction.\u0026rdquo; (Caregiver 11, 53 years).\u003c/em\u003e\u003c/p\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eDementia is an urgent global public health concern with its impact particularly pronounced in resourced limited settings. In many such contexts, the availability of trained care providers is insufficient to meet the needs of a rapidly increasing number of people living with dementia. Addressing this gap requires support for family and informal family caregivers who shoulder the majority of care responsibilities. These family caregivers often face multifaced challenges that place them at elevated risk for adverse health outcomes including depression, anxiety and other related health consequences [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. This study set out to generate a comprehensive understanding of the challenges and unmet needs experienced by family caregivers of people living with dementia in two urban cities of West Bengal, India. In this country, dementia prevalence is rising but awareness, specialised services and policy support remain limited. Family members provide the vast majority of care. Yet their experiences have rarely been systematically documented. This current study specifically explored dementia family caregivers\u0026rsquo; perspectives on both the challenges they face and the critical gaps in support, education and healthcare infrastructure. By addressing this evidence gap, this study provides essential insights for shaping responsive interventions and policies to improve dementia care and family caregivers\u0026rsquo; well-being.\u003c/p\u003e \u003cp\u003eThe findings of the present study highlights a range of significant challenges faced by family caregivers in the process of supporting relatives living with dementia. One of the most prominent and recurrent issues was the limited knowledge and awareness about dementia. For many family caregivers the term \u0026lsquo;dementia\u0026rsquo; was unfamiliar prior to their family member\u0026rsquo;s diagnosis and early symptoms such as forgetfulness, disorientation or personality changed were often misinterpreted as the normal part of aging. This finding is consistent with studies in low and middle income countries (LMICs) which show that limited dementia literacy delays recognition, diagnosis and intervention [\u003cspan additionalcitationids=\"CR35\" citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. In the absence of accurate information from healthcare professionals, many family caregivers reported relying on informal or unreliable sources including unverified online material, advice from neighbours or community hearsay [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. Such sources, while easily accessible, often perpetuated misconceptions such as attributing dementia to supernatural causes or inevitable ageing and occasionally led to ineffective or even harmful care practices. These knowledge gaps not only affected the quality of care provided but also increased family caregivers\u0026rsquo; emotional strain, uncertainty and sense of isolation in managing the condition. Behavioural changes emerged as one of the most distressing and disruptive aspects of the caregiving experience [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eCaregivers interviewed in the study presented here described a range of symptoms, including marked personality alterations, wandering, physical aggression, hallucinations and a pronounced loss of interest in activities that had once been deeply meaningful. These changes often unsettled the household environment, disrupted established routines and increased the emotional strain on family caregivers who frequently felt unprepared to manage such behaviours. The unpredictability of these symptoms compounded the challenges, creating a sense of constant vigilance and exhaustion. These findings are consistent with existing literature on the psychosocial impact of behavioural and psychological symptoms of dementia (BPSD), which are recognised as key drivers of caregivers\u0026rsquo; stress and institutionalisation decisions. The persistence of earlier memories alongside severe recent memory loss as reported here reflects the neurodegenerative progression of dementia with implications for communication and relationship dynamics [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Cultural beliefs and misconceptions played a significant role in shaping care seeking behaviours and influencing the overall trajectory of support for individuals with dementia. In this study, some family caregivers reported that their initial response to emerging symptoms such as memory loss, disorientation or unusual behaviours was to consult religious or spiritual healers rather than medical professionals. These decisions were often rooted in the attribution of symptoms to supernatural or moral causes such as divine punishment, curses or the consequences of past actions (karma). Such interpretations are not unique to this setting; they reflect broader patterns reported in South Asian and other low and middle income countries (LMICs), where deeply ingrained cultural and spiritual frameworks can delay biomedical consultation, reinforce fatalistic attitudes and limit engagement with evidence based treatment [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eStigma and negative societal attitudes also emerged as powerful forces shaping the day to day experiences of family caregivers. In several cases, dementia was equated with mental instability or even moral weakness, reflecting deep-rooted misconceptions about the nature of dementia. Such perceptions often prompted families to hide the diagnosis from neighbours, friends and even extended relatives, fearing ridicule, gossip or blame for the condition. The impact of stigma extended beyond social exclusion; it also contributed to internalised shame with some family caregivers questioning their own adequacy or feeling personally responsible for dementia. This emotional burden compounded the already significant psychological strain of caregiving, intensifying feelings of anxiety, guilt and helplessness. Importantly, stigma not only delayed diagnosis and access to treatment but also shaped how family caregivers engaged or refrained from engaging with health and community services. These findings align with global literature that identifies stigma as a major barrier to dementia care across diverse cultural contexts [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. Studies from both high-income and LMIC settings highlight how public misconceptions about dementia perpetuate social distancing and discrimination, limiting both the visibility of the condition and the availability of supportive interventions. Addressing stigma, therefore, is not only a matter of public awareness but a critical step in creating enabling environments where caregivers and people with dementia can access timely, compassionate and appropriate care without fear of judgment or exclusion [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThis study reveals significant and interconnected challenges faced by family caregivers of people living with dementia ranging from a lack of accessible information to systemic service limitations and insufficient emotional support. The findings echo global literature that highlights caregiving as a multidimensional experience influenced by cultural, health system and psychosocial factors [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e]. A consistent concern among family caregivers was the lack of structured and reliable information at the point of diagnosis and throughout the dementia care trajectory. Many family caregivers reported being unprepared for the complexities of dementia including behavioural and psychological symptoms and were often left to seek answers independently through informal networks or online sources [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. Inadequate information provision has been documented as a common gap in dementia care worldwide contributing to family carer distress and suboptimal management strategies [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]. In this study, misinformation sometimes led to ineffective or harmful practices, such as the use of unproven herbal remedies or reliance on religious rituals. These findings highlight the need for ongoing, culturally sensitive public education to counter stigma, improve early recognition and promote evidence based care.\u003c/p\u003e \u003cp\u003eEqually significant was the perceived absence of person-centred care in both hospital and home settings. Family caregivers frequently described services as generic, task-oriented and medically driven with minimal attention to the preferences, life histories and daily routines of the person living with dementia. Such approaches risk overlooking the unique psychosocial needs of individuals, leading to increased distress, behavioural symptoms and reduced quality of life. These accounts sharply contrast with internationally recognised best practice recommendations which emphasise person-centred care as a core principle in dementia support focusing on the individual\u0026rsquo;s values, past experiences and social context rather than solely on their disease symptoms [\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. Several family caregivers in this study also reported feeling excluded from care planning and decision-making, despite their intimate and long-standing knowledge of the person\u0026rsquo;s communication style, triggers and coping strategies. Such exclusion is not only disempowering for family caregivers but can also result in care strategies that are poorly matched to the person\u0026rsquo;s needs, increasing agitation and reducing trust in healthcare providers. Previous studies similarly highlight that the active involvement of family caregivers enhances the accuracy of clinical assessments, facilitates continuity of care and supports the delivery of interventions that are both culturally appropriate and effective [\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e]. Family caregivers also identified a critical shortage of dementia specific healthcare services. Both public and private facilities were defined as lacking trained professionals, appropriate diagnostic tools and emergency support for dementia. This reflects a broader shortage of specialist dementia services in low and middle income countries (LMICs), where general health providers may lack the skills to differentiate dementia from normal ageing or other conditions [\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e]. Family caregivers in this study advocated for accessible, localised dementia care centres, trained personnel and dedicated helplines which could reduce delays in diagnosis and improve care continuity. Navigating the care system emerged as another major challenge. Family caregivers described fragmented services, poor coordination, long waiting times and unclear referral pathways, resulting in repeated consultations and delayed diagnoses. Recent syntheses show that weak care coordination at the primary care level is widespread and undermines timely, appropriate care transitions, especially for people with complex needs such as cognitive impairment [\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e, \u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e]. The economic burden was an additional barrier with many family caregivers unable to afford private services leading to reliance on untrained informal care. These findings are consistent with evidence that fragmented health systems and financial constraints exacerbate family carer burden and delay treatment [\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e, \u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFinally, the study highlights the emotional and psychological strain of caregiving. Family caregivers described feelings of isolation, sadness and helplessness, particularly as the condition progressed and functional decline intensified. The lack of mental health support specifically for family caregivers left many without spaces to share their experiences or seek counselling. Prior research indicates that such emotional strain, if unaddressed, can contribute to burnout, depression and diminished caregiving capacity [\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e, \u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e]. Establishing peer support groups, respite care and accessible counselling could mitigate these impacts. These findings echo earlier observations [\u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e, \u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e] while highlighting the urgent need for family carer-inclusive policies and scalable interventions. Addressing the psychological well-being of family caregivers is not only a matter of individual support but a cornerstone of sustaining effective and long-term care systems.\u003c/p\u003e \u003cp\u003eAll the findings highlighted above should be interpreted in light of some limitation characterized this study. A main aspect to be considered in this regard concerns the fact that this investigation was conducted among caregivers from two urban cities in India. As a result, the findings may not be generalizable to caregivers residing in rural areas, where socio-economic conditions and healthcare infrastructure differ significantly from urban contexts. Caregivers in rural settings often face unique challenges, such as reduced access to accurate information about dementia, limited availability of specialized healthcare services and fewer support systems. These factors could influence both their understanding of the condition and their caregiving experiences in ways not captured by this study.\u003c/p\u003e"},{"header":"5. conclusion","content":"\u003cp\u003eDespite the limitations indicated above, this study contributes in different, innovative and relevant ways to the existing body of dementia research. First, it addresses a significant gap by focusing on the experiences and needs of dementia caregivers in an Indian context which is characterized by a population that remains underrepresented in global and regional dementia literature. In countries like India, where dementia prevalence is rising but formal care systems are still under-developed, such context-specific research is critically needed. The study offers culturally and socially grounded insights that reflect the realities faced by family caregivers in low and middle income settings, thus providing information that is both locally relevant and globally significant. In addition, the selection of participants from an NGO adds practical value to the findings. Unlike hospital-based studies, this community based setting allows for the exploration of caregiving experiences in environments where family caregivers are likely to rely on limited, informal or non-traditional support systems. This makes the findings particularly useful for NGOs, community health workers and policymakers designing grassroots interventions. Futhermore, the study prioritizes the voices and lived experiences of family caregivers, offering qualitative depth that enriches our understanding of the emotional, informational, and practical challenges they face. By exploring family caregivers\u0026rsquo; perceptions and needs directly, the study contributes to a more person-centered and empathetic framework for dementia care. Moreover, the methodological approach- involving in-depth interviews provides nuanced data that go beyond quantitative metrics to capture the complexity of caregiving in the Indian socio-cultural context. Lastly, the study lays important groundwork for future research by identifying key areas where family caregivers lack support, such as limited access to information, services, and emotional care. These findings can inform further studies across diverse settings, including rural populations, and among family caregivers accessing care through government, private, or traditional systems, as well as those who have not accessed any services. In doing so, the study contributes meaningfully to both academic and the practical development of family carer support systems in India and similar contexts.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to express their appreciation to the research participants for their essential contributions to our research. They would also like to express their gratitude to the University Grants Commission (UGC) for providing financial help in the form of full-time Doctoral Fellowships (UGC-NET-JRF). The organization made no additional contributions to the study\u0026rsquo;s execution, data analysis, or interpretation. We are grateful to the ARDSI, Kolkata for their valuable contribution in this study. This work was academically partially supported by the Italian Ministry of Health to IRCCS INRCA.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIB: conceptualization, data collection, formal analysis, investigation, methodology, resources, software, validation, visualization, writing- original draft, review \u0026amp; editing. SM: conceptualization, project administration, visualization, supervision, writing- Original draft editing \u0026amp; review. GL- Original draft edit \u0026amp; review. JvdS- Original draft edit \u0026amp; review. PM- review.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was conducted on a Doctoral fellowship grant from the University Grant Commission.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll data analysed during this study can be obtained from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was conducted in accordance with the principles of the Declaration of Helsinki. The Institutional Review Board of Indian Statistical Institute in Kolkata reviewed the study protocol, participant information documents and the applicable informed consent form and provided an ethical clearance certificate (ISI ethics clearance no: ISI-IEC/2018/10/02B). Informed consent was obtained from each of the participants prior to data collection.\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\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eNicola Veronese A, Koyanagi LJ, Dominguez S, Maggi P, Soysal F, Bolzetta L, Vernuccio L, Smith D, Matranga, Mario Barbagallo. Multimorbidity increases the risk of dementia: a 15 year follow-up of the SHARE study. Age Ageing. 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Innov aging. 2022;6(3):igac011. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1093/geroni/igac011\u003c/span\u003e\u003cspan address=\"10.1093/geroni/igac011\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\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, family caregiving, caregiver burden, unmet needs, India, qualitative research","lastPublishedDoi":"10.21203/rs.3.rs-9226253/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9226253/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e \u003cp\u003eDementia is a growing global public health concern and India alone accounts for an estimated 4.1\u0026nbsp;million cases, a figure expected to rise substantially in coming decades. In such settings, dementia care is largely dependent on informal family caregivers, who often provide extensive, unpaid support with limited access to formal services. Caregiving is further complicated by low dementia awareness, cultural misconceptions, stigma, and inadequate healthcare infrastructure. This study aims to examine the multidimensional challenges faced by family caregivers of people living with dementia and to identify their unmet needs in urban areas of West Bengal, India.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e \u003cp\u003eDescriptive qualitative research design was adopted to explore caregivers\u0026rsquo; lived experiences. Fourteen primary family caregivers were recruited using purposive and snowball sampling. Data were analysed using reflexive thematic analysis following Braun and Clarke\u0026rsquo;s six-phase framework. Ethical approval was obtained, and confidentiality was maintained throughout.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e \u003cp\u003eTwo overarching themes emerged: (1) multidimensional challenges in caregiving and (2) unmet needs of family caregivers. Key challenges included limited knowledge and awareness of dementia, distress associated with behavioural and psychological symptoms, cultural beliefs and misconceptions and stigma.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusion\u003c/b\u003e\u003c/p\u003e \u003cp\u003eThis study highlights the complex and interrelated challenges faced by family caregivers of people living with dementia in urban India. Findings underscore the urgent need for improved dementia awareness, accessible and integrated care services and culturally sensitive, person-centred approaches. Strengthening support systems for family caregivers, including education, healthcare access and psychological support is essential for enhancing caregiver well-being and ensuring sustainable dementia care in resource-limited settings.\u003c/p\u003e","manuscriptTitle":"Behind the closed doors: A qualitative study to explore the silent battle of dementia family caregivers in the Indian context","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-24 18:53:07","doi":"10.21203/rs.3.rs-9226253/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":"74dc8d11-c1ce-4bd4-8fb3-b71ddcba6218","owner":[],"postedDate":"April 24th, 2026","published":true,"recentEditorialEvents":[{"type":"decision","content":"Rejected","date":"2026-05-07T08:39:11+00:00","index":"","fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-05-07T08:57:57+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-24 18:53:07","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9226253","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9226253","identity":"rs-9226253","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}