{"paper_id":"0d92143b-e264-4ab3-8d73-421d4ad5d455","body_text":"\"I need help from other family members\" Views and expectations of family carers of people living with dementia on in-home respite care in Northwest China | 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 \"I need help from other family members\" Views and expectations of family carers of people living with dementia on in-home respite care in Northwest China Huiyue Zhang, Ziyi Zhang, Min Yin This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6282727/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 and Objectives: The family carersof people living with dementia face significant physical and emotional strain due to the constant supervision and care required by their loved ones. While in-home respite care is recognized as essential for alleviating caregiver burden, there is considerable variation in service provision across countries. Family caregivers often lack clarity on the types of support needed, and existing research on their expectations is limited. This study aims to explore the views and expectations of family caregivers regarding in-home respite care services, to better understand their needs and inform the development of more effective, tailored services. Method: Through purposive sampling, family caregivers of people with dementia from two provincial cognitive impairment centers in Lanzhou City, Gansu Province, were invited to participate in face-to-face semi-structured interviews to determine theirviews and expectations toward in-home respite services. Thematic analysis was applied, and the interview content was transcribed, organized, and analyzed using Nvivo-12.0 software. Results: A total of 15 primary family caregivers of people with dementia were interviewed, yielding three themes: 1) the physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care; 2) other family members are the most suitable home respite care providers; 3) high expectations for professional home respite services. Conclusion: The primary family caregivers of persons with dementia have an urgent need for assistance when caring for their loved ones at home, and they have high expectations for professional home respite services. They expect that in-home respite service providers can deliver targeted assistance to address problems encountered in their daily care, helping ensure the quality of life for both their family members and themselves. Dementia Alzheimer’s Disease In-Home Respite Care Family Caregiver Home Care Family Care Qualitative Study Introduction Due to the symptoms and characteristics of dementia, the sufferers have increasing needs for constant supervision, monitoring, and help associated with their memory confusion, behavioral disturbances, and gradual decline in the ability to care for themselves[1, 2]. Their caregivers need to devote more and more time to daily care[3]. It is recognized that the significant physical and psychological stresses of the sufferers’ family caregivers are related to 1) having complete responsibility for care, which affects the freedom of the caregiver’s activities, 2) the patient’s behavioral disturbances, such as aggression, 3) the loss of the intimate confiding relationship while having complete responsibility for physical care and/or supervision, and 4) the inability to get away from home[4, 5]. Caregivers have been reported to have poorer perceived health and a greater number of depression, anxiety, caregiver burden, and physical symptoms, mount poorer immune responses to viral challenges, and slower rates of wound healing[6]. They need support to keep themselves healthy while caring for people with dementia. It is acknowledged from the study that both people with dementia and their family carers preferred the sufferers to live and be cared for in a home environment[7]. It is said that families could provide personalized patient care with more affection, dignity, compassion, and patience at home. Also, staying in a familiar environment is good for the health of the older people; the movement back and forth between institutional care centers and home can exacerbate the confusion and distress of people with dementia[8]. To ease the pressure on social care and reduce the cost of disease care for older people, it is advocated by the government to age in place and at home, with corresponding financial program support, to delay the institutionalization of patients as long as possible[3]. The benefits of respite care services for families living with dementia have been identified, especially in-home respite care services, which allow family caregivers to get both physical and spiritual rest to restore themselves and maintain family care for the person with dementia as long as possible[8, 9]. However, according to the literature review, we found that there were inconsistencies in the content of in-home respite care services for families living with dementia in different countries. It is still not clear who provides the in-home respite care services and what should be provided. In Australia, America, and Belgium, the service providers were trained or medical-related professionals[3, 4, 8, 10]. In addition to basic medical services, temporary care replacement services, such as daily living maintenance and supervision for people with dementia, and disease health education for family carers were offered; they generally didn’t offer household services. In contrast, in other countries like Japan, the UK, and Spain, in-home respite services for families with dementia still include housework services, even if sometimes the service providers were professionals[1, 6, 11]. In some countries, like Germany[2], temporary respite care provided by neighbors, friends, and other family caregivers was more favored, even if such services included only basic living services for the sufferer and household services. To understand what services family caregivers of people with dementia actually need, the caregivers’ own point of view cannot be ignored. For now, there is a lack of research on the demand of caregivers for home respite services, so we hope to utilize this qualitative research to understand the expectations and demands of the families of people with dementia for home respite services, to explore the experiences and feelings of the primary family caregiver in caring for the person with dementia, and to understand their needs and expectations for in-home respite care services. Method Design This study adopted a descriptive phenomenological research method. The data collection method employed was face-to-face semi-structured interviews. Participants and sampling Participants were recruited from two Cognitive Disability Centers in Lanzhou, Gansu. Gansu Province is located in the northwestern region of China, where the economy is underdeveloped, and home care services for people with dementia are not well-developed. A sample of families affected by dementia who met the inclusion-exclusion criteria was invited for an in-depth, semi-structured, face-to-face interview. Purposive sampling was applied to develop a rich description of the phenomenon. Eligibility criteria for the patients and family caregivers included: 1) the patients had a diagnosis of mild cognitive impairment, Alzheimer's disease, vascular dementia, Lewy body dementia, or mixed dementia and were aged ≥65 years; 2) patients were living at home and being cared for by family caregivers. Exclusion criteria for patients and caregivers were: 1) family carers had a combination of severe mental illness or other major physical illness, and 2) the primary carers of people with dementia were not family members. The eligible interviewees were recruited until data saturation was achieved when additional participants did not reveal new ideas. The Lanzhou University Institutional Review Board approved this study. All participants gave informed consent to participate in the study and provided written consent before the beginning of the study. Data collection Between April 2023 and November 2023, 15 participants were recruited and completed in-depth, one-on-one interviews. The interview location was chosen according to the interviewees' wishes in a quiet, undisturbed place. Due to the patients' special characteristics in this study, some interviewees could not leave their homes, so interviews were conducted either in patients' homes or in cafés and teahouses near their residences. The researchers developed a comprehensive interview guide. Table 1 presents sample interview questions relevant to the study's objectives. The details are shown in Appendix 1. Participants' general information was gathered through a questionnaire, which included details such as the patient's gender, age, presence of other chronic illnesses, type of health insurance, occupation, education level, and primary financial support source. Their diagnosis and MMSE scores were obtained from their medical records. Additionally, information about the family caregiver was collected, including their gender, age, occupation, relationship to the patient, self-reported physical health, duration of caregiving, number of caregiving assistants, and caregiving frequency. Furthermore, standardized scales were used to assess the patients, including the Activities of Daily Living (ADL) scale. Informed consent was obtained from all patients. Table 1 Examples of interview questions related to the study objective 1. Tell me about your daily life from morning to night caring for your relative with dementia. 2. How do you feel about caring for patients? 3. What kind of help do you desired or expected in your caregiving? 4. Have you ever known about this form of help, which is in-home respite care? Before each interview, the researcher explained the study and confidentiality measures to the interviewee. The interviews were audio-recorded with consent, and the researcher noted non-verbal expressions, including head nods, silence periods, facial expressions, and mood changes. During interviews, the researcher employed communication skills such as questioning, repeating, responding, and summarizing based on interviewees' responses, encouraging family caregivers to express their opinions freely while exploring their genuine feelings. The first author, a third-year female master's nursing student, conducted the interviews. With consent, the researcher performed semi-participant observation of a family with an early-onset dementia member before beginning the interviews. She spent time with two main family members (a 73-year-old woman diagnosed with dementia and her husband) during daytime hours, sharing meals and outings. In the evenings, she returned to school and documented her daily observations. The observation period lasted three weeks, providing her with comprehensive insight into dementia families' daily lives. Data analysis Data collection and analysis were synchronized, with two researchers converting the audio recordings of the interviews into text within 24 hours after each interview. The transcripts were combined with the written data and double-checked. When transcribing, the audio recordings were repeatedly listened to and recalled, referring to the pauses, mood swings, and body movements during the conversation. The transcripts were fed into NVivo-12 software for initial data coding. The researcher listened to the audio recordings and read the transcribed texts repeatedly to immerse herself in the data and gain a holistic perception of the materials. Important ideas and concepts were labeled during the process, and open-ended sentence-by-sentence coding was carried out. Themes and sub-themes were categorized based on the research questions and the similarities and correlations between codes and themes, also with the help of diagrams to show the relationships between the themes. Coding and categorization was a cyclical process. While subsequent information was analyzed, the pre-categorized themes might be broken down and reassembled, or new elements added. After obtaining the themes and sub-themes, the researcher needed to compare them with the original textual information, constantly think about the internal logic between the themes, and discuss these in the research group before making the final synthesis and summary to form the final themes and interpret the data to reveal the hidden intrinsic meaning within the text. Findings Demographic characteristics Fifteen family caregivers of older individuals participated in the study. Table 2 displays the demographic characteristics of the participants. The mean age of the participants was 78 years and ranged from 66 to 91, with six males and nine females. Thirteen participants were diagnosed with Alzheimer’s Disease (AD), two with vascular dementia, eight with mild dementia, four with moderate dementia, and three with severe dementia. The mean time since their initial diagnosis was 4.4 years. Among the caregivers, eight were in couple relationships with older individuals, and the remaining seven were children of the patients. The average duration of their continuous care for older people with dementia was 4.33 years, ranging from 1 to 8 years, with an average of more than 14 hours of care per day. Table 2. Participant characteristics: family carers and individuals with dementia (n = 15) Family carers ranges N % females 10 66.7% males 5 33.3% duration of care for the older person (years) ＜2 2 13.3% 2-5 8 53.3% ＞5 5 33.3% relationship with the older person husband-wife 8 53.3% parent-child 7 46.7% work retired 10 66.7% full-time work 3 20.0% part-time work 2 13.3% Individuals with dementia females 9 60.0% males 6 40.0% diagnosis AD 13 86.7% vascular dementia 2 13.3% severity of dementia mild 8 53.3% moderate 4 26.7% severe 3 20% MMSE 21-26 5 33.3% 10-20 1 6.7% 0-9 7 46.7% not available 2 13.3% ADL ＞60 12 80% 60-40 1 6.7% 20-39 1 6.7% ＜20 1 6.7% Mean SD The average age for family carers 63.3 10.97 Average ages for people with dementia 78.2 8.07 Average daily hours of care for the older person(hours) 14.0 7.64 Qualitative findings The family caregivers interviewed described their experiences caring for people with dementia and expressed their perceptions and expectations of in-home respite care services. We summarized three main themes from their statements: 1) the physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care; 2) other family members are the most suitable home respite-care providers; 3) high expectations for professional home respite services. Theme 1: The physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care. Four sub-themes informed this theme: (1) \"better to be cared for in familiar living environment\"; (2) \"The duty can't be discarded\"; (3) \"Exhausting caregiving experience\"; (4) \"Lack of break.\" Familiar living environment: Carers reported that the home is the most suitable living environment for people with dementia. They indicated that when older people with dementia are cared for in their familiar environment, such as their homes, they are more likely to be peaceful. Otherwise, it will be more difficult for carers to provide care. ‘She can’t leave her nest(home); she must live here. The home is the common spot where she can sleep familiarly. Whenever you go, she feels unsettled and wants to go back home, so providing care would be more difficult (if outside the home).’ Interview 2 Family caregivers expressed that the person with dementia might have more psycho-behavioral symptoms when placed in an unfamiliar environment, such as shouting, screaming, wandering and pacing, and even running around aimlessly. ‘She knows it is her home, a familiar environment, and she can't stay at my house. When she came to my house, she didn't even sit on the couch; she just kept wandering around and was too anxious.’ Interview 4 The duty cannot be discarded. Caregivers believed that caring for their relatives with dementia was an obligation. Although this responsibility made them feel overwhelmed, their affection and attachment to their loved ones prevented them from relinquishing this duty. ‘I was so angry that I wanted to turn around and leave, but I still did not; I don’t know if it’s because I’m so attached to her, but I just can’t do it.’ Interviewer 5 ‘Sometimes, I am pretty pessimistic. I look at her in this old age, and think it seems worthless. But it's my own family and my mother, and I continue to try my best to go, oops! I can't give up. If I give up, she will feel pretty painful. After all, she is our family member.’ Interviewer 4 Physically and psychologically exhausting caregiving experiences were common. Providing care to family members with dementia was demanding and stressful for most carers. ‘The point is that she keeps causing me troubles, and it is impossible to communicate with her, which makes me feel overwhelmed.’ Interviewer 12 ‘She’s just torturous ...... Caring for the older person (with dementia) can wear you out physically and mentally! ...... My sister said, ‘Gee, when I get to think I will take care of her, I get a headache, I fret, and it is really challenging, and then I was tossed around for a week and get physically and mentally exhausted!’ Interviewer 15 Overwhelming and exhausting caregiving experiences make carers believe there is no other support available, compelling them to endure silently while gritting their teeth to persevere. ‘Aigoo, I don’t know who can serve this kind of people, dirty and tired, who can? so I don’t even think about it. I grit my teeth and hold on to it ...... I don’t think anyone else can do it, so I never think of anyone who can come to me to give me a helping hand, I just grit my teeth and hold on to it.’ Interviewer 17 Lack of breaks. During the period of caring for people with dementia, caregivers must pay constant attention to and care for older people \"around the clock,\" maintaining heightened vigilance to ensure their safety. There is no time for caregivers to rest. ‘I can't even go far now because of caring for her. Now I've lost much of my free time, and my daily life just seems to revolve around her?’ Interviewer 4 The long hours of caregiving place a great deal of psychological pressure on caregivers, and respondents reported that the caregiving routine, which lacks free time, was extremely distressing. ‘Oops, it’s agonizing, ah, I'm going crazy ...... I can't bear taking care of her like every day ...... There is no easy time in this house all day long.’ Interviewer 12 Theme 2: Other family members are the most suitable home respite care providers Two sub-themes informed this theme: (1) \"Distrust of Unprofessional Carers\"; (2) \"Timely and Convenient Support from Other Family Members.\" Distrust of unprofessional carers: Several respondents stated that they did not trust nannies, rest homes, or other non-medical professionals. They believed that family members could provide more attentive and considerate care for their older relatives. ‘Her teeth are not in good condition. She need the rice be made softer to chew, now she eats fine (under my care), but if we hire a babysitter and the person bullies her, (her condition would be different), no one knows about it’ Interviewer 2 In their view, the challenging work of caring for people with dementia may expose older adults to verbal and physical abuse by non-professional service providers. Additionally, older individuals may not be able to report their abuse experiences promptly due to their cognitive dysfunction. ‘Generally speaking, it is sure to know that the nanny will reprimand her, but she does not know anything, so beating and scolding is inevitable ...... we spent money and let her get beaten and scolded; it feels unbearable.’ Interviewer 3 Timely and convenient support from other family members proves crucial. Based on carers' experiences, when primary carers face difficulties coping with challenging situations, other family members often provide more accessible and timely assistance than service providers at agencies. ‘I especially want someone (to help me). I cannot even pick up her medications when I am alone, even if it's in the next room, I cannot get it, that is when I need someone the most. (in this condition) I would call my brothers and nephews to come quickly and help me get the medicine.’ Interviewer 6 Moreover, some carers felt hopeless about receiving help from others and believed that only family assistance was reliable. ‘Because in my mind, a patient like her can only rely on her family, (only families) can understand the bearings, and help her to the best of our ability, it's useless to rely on other people.’ Interviewer 4 Theme 3: High expectations for professional home respite services Two sub-themes informed this theme: (1) 'Better Quality of Care, Slower Disease Progression' and (2) 'Expectation of Targeted Help with the Practical Difficulties During Care.' Better quality of care, slower disease progression. Carers believed that professional in-home respite service providers could deliver higher-quality care services for people with dementia to ensure their quality of life. ‘I'll help her adjust her mood and comfort her feelings. (I think) A professional would be better sometimes; it would be more effective (if it was down by a professional personnel).’ Interviewer 6 Caregivers had high expectations and perceived that professional, quality care was beneficial in slowing down the progression of dementia among older individuals. ‘Older people would feel better if the quality of care is high. Just like my mother, if she is in a better mood, the process of her illness can be slowed down, and I think that is very important.’ Interviewer 3 Expectations for targeted assistance with practical difficulties during caregiving. Respondents indicated that they encountered numerous challenges while providing care and desired professional caregiving services to offer support, such as knowledge counseling and skills guidance that could provide prompt assistance when they faced difficulties. ‘If there are any problems during the care, I can go to get some advice, or a professional caregiver can come to my home and guide us.’ Interviewer 7 Respondents expected that professional home respite service providers could assist them with medication management. The problem of medication management for people with dementia is more severe than for those with other chronic illnesses, and a lack of caregivers' supervision often exacerbates these problems. ‘My dad reminded her to take her medicine, but she refused to admit that she was sick and got very angry, refusing to take the medication. There was this one time they had a huge fight, and of course, they’d been arguing about it a lot before that too. After that, my dad stopped paying attention to it, and her condition worsened.’ Interviewer 4 Psychiatric symptoms and behavioral difficulties are the primary challenges faced by individuals with dementia and pose significant obstacles for non-professional caregivers. Survey respondents indicated that these psychiatric symptoms and behavioral issues not only intensify the caregiving burden but also cause severe psychological distress for caregivers, who urgently require assistance and professional guidance from healthcare practitioners. ‘When he messes with me and causes me stress, I want to run away, and that's what happens.’ Interviewer 5 Respondents believed that professional cognitive rehabilitation training could slow down disease progression in older people, especially for those in early stages of dementia, and they urgently hoped that older individuals could receive effective rehabilitation training. ‘The cognitive rehabilitation, as you guys are talking about, can let her complete some activities, do some crafts, or take part in little games, somethings like that, to let her exercise.’ Interviewer 4 Discussion This study aimed to examine the experiences and perceptions of family caregivers who provide care for individuals with dementia, specifically regarding in-home respite services. Through the analysis of semi-structured interviews, three primary themes emerged: 1) the physically and mentally exhausting caregiving experience and urgent need for shared in-home care assistance; 2) other family members serve as the most suitable home respite care providers; 3) high expectations for professional home respite services. These findings underscore the significant challenges of caregiving for people with dementia and highlight the critical gaps in the current caregiving system that require immediate attention. Urgent Need for Assistance A central theme in this study was the physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care. Caregivers described caregiving as a continuous and demanding task that left little time for personal breaks. This aligns with existing literature, which consistently highlights the immense burden placed on family caregivers of individuals with dementia[12, 13]. The constant vigilance required to ensure the safety and well-being of individuals with dementia, coupled with the lack of respite, often leads caregivers to burnout. Participants in this study also expressed feelings of isolation and frustration, noting that caregiving duties left them with no time for personal activities or self-care. These findings are consistent with previous research that indicates caregiving without proper respite leads to significant emotional and psychological stress[14]. Importantly, caregivers in this study also emphasized the significance of people with dementia being cared for in a \"familiar living environment\"; they believed it was essential for minimizing agitation and confusion in individuals with dementia. This observation supports the findings in previous studies, which suggest that people with dementia experience fewer behavioral problems and better quality of life when they remain in familiar surroundings[7]. Taking this into account, caregivers desired respite care services that would allow them to continue providing care in the home environment. The Role of Other Family Members as Respite Providers Another major theme was the pivotal role of family members in delivering respite care. Caregivers expressed their preference for relatives to assume caregiving duties, emphasizing familial trust and emotional connections. This theme aligns with findings from other studies that underscore the significance of family support in navigating the intricate demands of dementia caregiving[15, 16]. Caregivers articulated considerable apprehension regarding non-professional caregivers, such as nannies or private aides, stemming from concerns about care quality. Several caregivers worried that paid caregivers might demonstrate negligence or abuse, particularly since individuals with dementia could not effectively communicate their experiences. This underscores the vulnerability of dementia patients to physical and emotional mistreatment, a well-documented issue in dementia care literature[17]. Consequently, enhanced training and supervision of non-professional caregivers remain essential to ensure dementia patients receive care in a secure environment. Furthermore, when family members were accessible, caregivers deemed them more dependable and attentive than external care providers. This perception stems from family members typically serving as the most steadfast and familiar support source. These insights indicate that respite care services should extend beyond professional caregivers to offer guidance and support for family caregivers, facilitating effective collaboration among relatives in caregiving responsibilities. High Expectations for Professional In-Home Respite Services The third prominent theme that emerged was the high expectations for professional in-home respite services. Participants emphasized the need for professional, skilled care providers who could address both the physical and emotional needs of individuals with dementia. This aligns with the findings of Jenkins[18] and Wang[19], who noted that quality caregiving is essential for enhancing the well-being of people with dementia and slowing disease progression. Caregivers in this study specifically mentioned their desire for help with medication management, addressing psychiatric symptoms, and providing cognitive rehabilitation, highlighting the need for comprehensive care models that extend beyond basic physical assistance and focus further on the cognitive and emotional aspects of dementia care. Caregivers also expressed a specific desire for guidance and practical advice when confronting caregiving challenges, particularly in managing behavioral symptoms. This aligns with literature that emphasizes the importance of support for caregivers in managing difficult behavioral and psychological symptoms often observed in people with dementia[13]. Participants hoped for access to professional knowledge and skills, whether through direct in-home assistance or consultations, which would help them manage daily caregiving challenges. This finding emphasizes that home respite services must not only provide temporary solutions but also offer long-term support through professional guidance, education, and training for family caregivers. Implications for Practice and Policy The findings of this study have several important implications for practice and policy in dementia care. First, the urgent need for respite care suggests that healthcare systems should prioritize the development and funding of high-quality in-home respite services to alleviate caregivers' physical and emotional burdens. These services should also ensure that caregivers have access to resources, including training, counseling and practical assistance, empowering them to better manage their caregiving responsibilities. In addition, the findings underscore the importance of family involvement in dementia care. Policymakers and healthcare providers should consider initiatives that facilitate family engagement, such as family-caregiver education programs or peer-support groups. Furthermore, the distrust expressed by caregivers toward non-professional caregivers highlights the need for better regulation and oversight of paid caregiving services. Training and certification should be expanded to ensure that service providers are equipped to meet the unique needs of people with dementia. Last but not least, the study indicates the need for integrated care models that combine professional respite services with family caregiving. The combination of family support and professional care could offer a more comprehensive approach to dementia caregiving, reducing strain on family members while ensuring people with dementia receive high-quality care. Limitations and Future Research This study has several limitations. The participants were drawn from a specific geographical area, limiting the generalizability of the findings. Future studies should aim to include a more diverse sample, exploring how caregiving experiences differ across various cultural and socioeconomic groups. Additionally, some of the interviews took place in the caregivers' homes, where the presence of the person with dementia occasionally led to interruptions. Caregivers were sometimes called upon to attend to the patients' needs, leading to brief disruptions in the conversation. Although this provided valuable insights into the caregiving dynamics and allowed the researchers to observe the real-time caregiving environment, these interruptions limited in-depth discussions to a certain extent and may have affected the overall depth of the data. These limitations should be considered when interpreting the findings. Future research could address these challenges by employing larger, more diverse samples to provide a more comprehensive understanding of the caregiving experience. Conclusion The findings of this study reveal the significant challenges faced by family caregivers of individuals with dementia, particularly the physical and mental exhaustion resulting from the demanding nature of in-home caregiving. Caregivers express an urgent need for support, with many viewing other family members as the most suitable providers of respite care. However, there is also a strong expectation for professional in-home respite services that can offer specialized and targeted assistance. These services are anticipated to help address the unique difficulties encountered in daily dementia care, ultimately improving the quality of life for both the caregiver and the person with dementia. Meeting these expectations through professional support would alleviate the burden on family caregivers, creating a more sustainable caregiving environment and ensuring the well-being of all involved. List of abbreviations AD Alzheimer’s Disease MMSE Mini-Mental State Examination ADL Activities of Daily Living scale Declarations Ethics approval and consent to participate This study was performed according to the principles of the Declaration of Helsinki. Ethics committee approval for the study was obtained from the Medical Ethics Committee of Lanzhou University School of Nursing (Decision no: LZUHLXY20230074 Date: March 2, 2023). All participants were aware of the purpose, process, and relevant considerations of the study, voluntarily agreed to participate in this study, and signed an informed consent form. Consent for publication All information about the participants presented in the study was anonymized. The study did not present images, sounds or other personal or clinical details related to them. All study subjects and study participants agree to publish all relevant content. Funding This study was supported by the Fundamental Research Funds for the Central Universities(lzujbky-2022-it36). References Feng M, Igarashi A, Noguchi-Watanabe M, Yoshie S, Iijima K, Yamamoto-Mitani N. Characteristics of care management agencies affect expenditure on home help and day care services: A population-based cross-sectional study in Japan. Geriatr Gerontol Int. 2017;17(11):2224-31. von Kutzleben M, Reuther S, Dortmann O, Holle B. 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Arch Psychiatr Nurs. 2002;16(3):134-44. Fang B, Yan E. Abuse of Older Persons With Dementia: A Review of the Literature. Trauma Violence Abuse. 2018;19(2):127-47. Jenkins C, Feldman G. Recognition of preclinical signs of dementia: A qualitative study exploring the experiences of family carers and professional care assistants. J Clin Nurs. 2018;27(9-10):1931-40. Wang N, Albaroudi A, Chen J. Decomposing Urban and Rural Disparities of Preventable ED Visits Among Patients With Alzheimer's Disease and Related Dementias: Evidence of the Availability of Health Care Resources. J Rural Health. 2021;37(3):624-35. Additional Declarations No competing interests reported. Supplementary Files Appendix1.pdf Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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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-6282727\",\"acceptedTermsAndConditions\":true,\"allowDirectSubmit\":true,\"archivedVersions\":[],\"articleType\":\"Research Article\",\"associatedPublications\":[],\"authors\":[{\"id\":462860540,\"identity\":\"fe664eec-b588-4897-9f7a-9b57e949d847\",\"order_by\":0,\"name\":\"Huiyue Zhang\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Lanzhou University\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Huiyue\",\"middleName\":\"\",\"lastName\":\"Zhang\",\"suffix\":\"\"},{\"id\":462860541,\"identity\":\"1c171a15-7330-491b-81df-f1d90ef2f709\",\"order_by\":1,\"name\":\"Ziyi Zhang\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Lanzhou University\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Ziyi\",\"middleName\":\"\",\"lastName\":\"Zhang\",\"suffix\":\"\"},{\"id\":462860542,\"identity\":\"166e7bb1-a738-47e2-ae94-97af99a42af6\",\"order_by\":2,\"name\":\"Min Yin\",\"email\":\"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAuklEQVRIiWNgGAWjYDACZiBOYLCRAXN4SNCSxkOCFgg4TIIW3XbeYxIPd5znkZ+RwPjgbRuDvDkhLWaH+dIkEs/c5mGckcBsOLeNwXBnA0EtPGYSiW23eZglEtikedsYEgwOEKflHA+bRAL7b1K0HODhAdrCTKwWY4vEtmQeCZ6HzZJzzkkYbiCo5fwZw5s/2+zk5NuTD354U2YjT9AWIGCRgNCMDUBCgrB6IGD+QJSyUTAKRsEoGLkAAP34Nod8S7ZUAAAAAElFTkSuQmCC\",\"orcid\":\"\",\"institution\":\"Lanzhou University\",\"correspondingAuthor\":true,\"prefix\":\"\",\"firstName\":\"Min\",\"middleName\":\"\",\"lastName\":\"Yin\",\"suffix\":\"\"}],\"badges\":[],\"createdAt\":\"2025-03-22 09:38:14\",\"currentVersionCode\":1,\"declarations\":\"\",\"doi\":\"10.21203/rs.3.rs-6282727/v1\",\"doiUrl\":\"https://doi.org/10.21203/rs.3.rs-6282727/v1\",\"draftVersion\":[],\"editorialEvents\":[],\"editorialNote\":\"\",\"failedWorkflow\":false,\"files\":[{\"id\":95527657,\"identity\":\"e70f1a58-1705-41f4-826d-73e08aa12e3d\",\"added_by\":\"auto\",\"created_at\":\"2025-11-10 10:14:27\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"manuscript-pdf\",\"size\":771446,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"manuscript.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-6282727/v1/39a80b76-9bf2-4e87-8ac5-a86548db9c64.pdf\"},{\"id\":83603692,\"identity\":\"81087bea-08ce-4818-b9d4-4b15beb65719\",\"added_by\":\"auto\",\"created_at\":\"2025-05-29 10:01:47\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"supplement\",\"size\":57794,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"Appendix1.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-6282727/v1/f1a0da257cd70ca7007f5927.pdf\"}],\"financialInterests\":\"No competing interests reported.\",\"formattedTitle\":\"\\\"I need help from other family members\\\" Views and expectations of family carers of people living with dementia on in-home respite care in Northwest China\",\"fulltext\":[{\"header\":\"Introduction\",\"content\":\"\\u003cp\\u003eDue to the symptoms and characteristics of dementia, the sufferers have increasing needs for constant supervision, monitoring, and help associated with their memory confusion, behavioral disturbances, and gradual decline in the ability to care for themselves[1, 2]. Their caregivers need to devote more and more time to daily care[3]. It is recognized that the significant physical and psychological stresses of the sufferers’ family caregivers are related to 1) having complete responsibility for care, which affects the freedom of the caregiver’s activities, 2) the patient’s behavioral disturbances, such as aggression, 3) the loss of the intimate confiding relationship while having complete responsibility for physical care and/or supervision, and 4) the inability to get away from home[4, 5]. Caregivers have been reported to have poorer perceived health and a greater number of depression, anxiety, caregiver burden, and physical symptoms, mount poorer immune responses to viral challenges, and slower rates of wound healing[6]. They need support to keep themselves healthy while caring for people with dementia.\\u003c/p\\u003e\\n\\u003cp\\u003eIt is acknowledged from the study that both people with dementia and their family carers preferred the sufferers to live and be cared for in a home environment[7]. It is said that families could provide personalized patient care with more affection, dignity, compassion, and patience at home. Also, staying in a familiar environment is good for the health of the older people; the movement back and forth between institutional care centers and home can exacerbate the confusion and distress of people with dementia[8]. To ease the pressure on social care and reduce the cost of disease care for older people, it is advocated by the government to age in place and at home, with corresponding financial program support, to delay the institutionalization of patients as long as possible[3]. The benefits of respite care services for families living with dementia have been identified, especially in-home respite care services, which allow family caregivers to get both physical and spiritual rest to restore themselves and maintain family care for the person with dementia as long as possible[8, 9].\\u003c/p\\u003e\\n\\u003cp\\u003eHowever, according to the literature review, we found that there were inconsistencies in the content of in-home respite care services for families living with dementia in different countries. It is still not clear who provides the in-home respite care services and what should be provided. In Australia, America, and Belgium, the service providers were trained or medical-related professionals[3, 4, 8, 10]. In addition to basic medical services, temporary care replacement services, such as daily living maintenance and supervision for people with dementia, and disease health education for family carers were offered; they generally didn’t offer household services. In contrast, in other countries like Japan, the UK, and Spain, in-home respite services for families with dementia still include housework services, even if sometimes the service providers were professionals[1, 6, 11]. In some countries, like Germany[2], temporary respite care provided by neighbors, friends, and other family caregivers was more favored, even if such services included only basic living services for the sufferer and household services. To understand what services family caregivers of people with dementia actually need, the caregivers’ own point of view cannot be ignored. For now, there is a lack of research on the demand of caregivers for home respite services, so we hope to utilize this qualitative research to understand the expectations and demands of the families of people with dementia for home respite services, to explore the experiences and feelings of the primary family caregiver in caring for the person with dementia, and to understand their needs and expectations for in-home respite care services.\\u003c/p\\u003e\"},{\"header\":\"Method\",\"content\":\"\\u003cp\\u003e\\u003cstrong\\u003eDesign\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThis study adopted a descriptive phenomenological research method. The data collection method employed was face-to-face semi-structured interviews.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eParticipants and sampling\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eParticipants were recruited from two Cognitive Disability Centers in Lanzhou, Gansu. Gansu Province is located in the northwestern region of China, where the economy is underdeveloped, and home care services for people with dementia are not well-developed. A sample of families affected by dementia who met the inclusion-exclusion criteria was invited for an in-depth, semi-structured, face-to-face interview. Purposive sampling was applied to develop a rich description of the phenomenon. Eligibility criteria for the patients and family caregivers included: 1) the patients had a diagnosis of mild cognitive impairment, Alzheimer\\u0026apos;s disease, vascular dementia, Lewy body dementia, or mixed dementia and were aged \\u0026ge;65 years; 2) patients were living at home and being cared for by family caregivers. Exclusion criteria for patients and caregivers were: 1) family carers had a combination of severe mental illness or other major physical illness, and 2) the primary carers of people with dementia were not family members. The eligible interviewees were recruited until data saturation was achieved when additional participants did not reveal new ideas. The Lanzhou University Institutional Review Board approved this study. All participants gave informed consent to participate in the study and provided written consent before the beginning of the study.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eData collection\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eBetween April 2023 and November 2023, 15 participants were recruited and completed in-depth, one-on-one interviews. The interview location was chosen according to the interviewees\\u0026apos; wishes in a quiet, undisturbed place. Due to the patients\\u0026apos; special characteristics in this study, some interviewees could not leave their homes, so interviews were conducted either in patients\\u0026apos; homes or in caf\\u0026eacute;s and teahouses near their residences.\\u003c/p\\u003e\\n\\u003cp\\u003eThe researchers developed a comprehensive interview guide. Table 1 presents sample interview questions relevant to the study\\u0026apos;s objectives.\\u0026nbsp;The details are shown in Appendix 1.\\u0026nbsp;Participants\\u0026apos; general information was gathered through a questionnaire, which included details such as the patient\\u0026apos;s gender, age, presence of other chronic illnesses, type of health insurance, occupation, education level, and primary financial support source. Their diagnosis and MMSE scores were obtained from their medical records. Additionally, information about the family caregiver was collected, including their gender, age, occupation, relationship to the patient, self-reported physical health, duration of caregiving, number of caregiving assistants, and caregiving frequency. Furthermore, standardized scales were used to assess the patients, including the Activities of Daily Living (ADL) scale. Informed consent was obtained from all patients.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 1 Examples of interview questions related to the study objective\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"560\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e1. Tell me about your daily life from morning to night caring for your relative with dementia.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e2. How do you feel about caring for patients?\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e3. What kind of help do you desired or expected in your caregiving?\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e4. Have you ever known about this form of help, which is in-home respite care?\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003eBefore each interview, the researcher explained the study and confidentiality measures to the interviewee. The interviews were audio-recorded with consent, and the researcher noted non-verbal expressions, including head nods, silence periods, facial expressions, and mood changes. During interviews, the researcher employed communication skills such as questioning, repeating, responding, and summarizing based on interviewees\\u0026apos; responses, encouraging family caregivers to express their opinions freely while exploring their genuine feelings.\\u003c/p\\u003e\\n\\u003cp\\u003eThe first author, a third-year female master\\u0026apos;s nursing student, conducted the interviews. With consent, the researcher performed semi-participant observation of a family with an early-onset dementia member before beginning the interviews. She spent time with two main family members (a 73-year-old woman diagnosed with dementia and her husband) during daytime hours, sharing meals and outings. In the evenings, she returned to school and documented her daily observations. The observation period lasted three weeks, providing her with comprehensive insight into dementia families\\u0026apos; daily lives.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eData analysis\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eData collection and analysis were synchronized, with two researchers converting the audio recordings of the interviews into text within 24 hours after each interview. The transcripts were combined with the written data and double-checked. When transcribing, the audio recordings were repeatedly listened to and recalled, referring to the pauses, mood swings, and body movements during the conversation. The transcripts were fed into NVivo-12 software for initial data coding. The researcher listened to the audio recordings and read the transcribed texts repeatedly to immerse herself in the data and gain a holistic perception of the materials. Important ideas and concepts were labeled during the process, and open-ended sentence-by-sentence coding was carried out. Themes and sub-themes were categorized based on the research questions and the similarities and correlations between codes and themes, also with the help of diagrams to show the relationships between the themes. Coding and categorization was a cyclical process. While subsequent information was analyzed, the pre-categorized themes might be broken down and reassembled, or new elements added. After obtaining the themes and sub-themes, the researcher needed to compare them with the original textual information, constantly think about the internal logic between the themes, and discuss these in the research group before making the final synthesis and summary to form the final themes and interpret the data to reveal the hidden intrinsic meaning within the text.\\u003c/p\\u003e\"},{\"header\":\"Findings\",\"content\":\"\\u003cp\\u003e\\u003cstrong\\u003eDemographic characteristics\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eFifteen family caregivers of older individuals participated in the study. Table 2 displays the demographic characteristics of the participants. The mean age of the participants was 78 years and ranged from 66 to 91, with six males and nine females. Thirteen participants were diagnosed with Alzheimer\\u0026rsquo;s Disease (AD), two with vascular dementia, eight with mild dementia, four with moderate dementia, and three with severe dementia. The mean time since their initial diagnosis was 4.4 years. Among the caregivers, eight were in couple relationships with older individuals, and the remaining seven were children of the patients. The average duration of their continuous care for older people with dementia was 4.33 years, ranging from 1 to 8 years, with an average of more than 14 hours of care per day.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eTable 2. Participant characteristics:\\u0026nbsp;\\u003c/strong\\u003e\\u003cstrong\\u003efamily carers and individuals with dementia (n = 15)\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellspacing=\\\"0\\\" cellpadding=\\\"0\\\" width=\\\"553\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eFamily carers\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eranges\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eN\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003e%\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003efemales\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e10\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e66.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003emales\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e33.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eduration of care for the older person (years)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e＜2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e13.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e2-5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e8\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e53.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e＞5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e33.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003erelationship with the older person\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003ehusband-wife\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e8\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e53.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eparent-child\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e46.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003ework\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eretired\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e10\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e66.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003efull-time work\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e20.0%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003epart-time work\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e13.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eIndividuals with dementia\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003efemales\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e9\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e60.0%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003emales\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e6\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e40.0%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003ediagnosis\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eAD\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e13\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e86.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003evascular dementia\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e13.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eseverity of dementia\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003emild\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e8\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e53.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003emoderate\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e4\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e26.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003esevere\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e20%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eMMSE\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e21-26\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e33.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e10-20\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e6.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e0-9\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e46.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003enot available\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e13.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003eADL\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e＞60\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e12\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e80%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e60-40\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e6.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e20-39\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e6.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e＜20\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e6.7%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\u003cbr\\u003e\\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eMean\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eSD\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eThe average age for family carers\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e63.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e10.97\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAverage ages for people with dementia\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e78.2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e8.07\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAverage daily hours of care for the older person(hours)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e14.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd\\u003e\\n \\u003cp\\u003e7.64\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eQualitative findings\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe family caregivers interviewed described their experiences caring for people with dementia and expressed their perceptions and expectations of in-home respite care services. We summarized three main themes from their statements: 1) the physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care; 2) other family members are the most suitable home respite-care providers; 3) high expectations for professional home respite services.\\u003c/p\\u003e\\n\\u003cp\\u003eTheme 1: The physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care.\\u003c/p\\u003e\\n\\u003cp\\u003eFour sub-themes informed this theme: (1) \\u0026quot;better to be cared for in familiar living environment\\u0026quot;; (2) \\u0026quot;The duty can\\u0026apos;t be discarded\\u0026quot;; (3) \\u0026quot;Exhausting caregiving experience\\u0026quot;; (4) \\u0026quot;Lack of break.\\u0026quot;\\u003c/p\\u003e\\n\\u003cp\\u003eFamiliar living environment: Carers reported that the home is the most suitable living environment for people with dementia. They indicated that when older people with dementia are cared for in their familiar environment, such as their homes, they are more likely to be peaceful. Otherwise, it will be more difficult for carers to provide care.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;She can\\u0026rsquo;t leave her nest(home); she must live here. The home is the common spot where she can sleep familiarly. Whenever you go, she feels unsettled and wants to go back home, so providing care would be more difficult (if outside the home).\\u0026rsquo; \\u003cstrong\\u003eInterview 2\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eFamily caregivers expressed that the person with dementia might have more psycho-behavioral symptoms when placed in an unfamiliar environment, such as shouting, screaming, wandering and pacing, and even running around aimlessly.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;She knows it is her home, a familiar environment, and she can\\u0026apos;t stay at my house. When she came to my house, she didn\\u0026apos;t even sit on the couch; she just kept wandering around and was too anxious.\\u0026rsquo; \\u003cstrong\\u003eInterview 4\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe duty cannot be discarded. Caregivers believed that caring for their relatives with dementia was an obligation. Although this responsibility made them feel overwhelmed, their affection and attachment to their loved ones prevented them from relinquishing this duty.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;I was so angry that I wanted to turn around and leave, but I still did not; I don\\u0026rsquo;t know if it\\u0026rsquo;s because I\\u0026rsquo;m so attached to her, but I just can\\u0026rsquo;t do it.\\u0026rsquo;\\u003cstrong\\u003e\\u0026nbsp;Interviewer 5\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Sometimes, I am pretty pessimistic. I look at her in this old age, and think it seems worthless. But it\\u0026apos;s my own family and my mother, and I continue to try my best to go, oops! I can\\u0026apos;t give up. If I give up, she will feel pretty painful. After all, she is our family member.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 4\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003ePhysically and psychologically exhausting caregiving experiences were common. Providing care to family members with dementia was demanding and stressful for most carers.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;The point is that she keeps causing me troubles, and it is impossible to communicate with her, which makes me feel overwhelmed.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 12\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;She\\u0026rsquo;s just torturous ...... Caring for the older person (with dementia) can wear you out physically and mentally! ...... My sister said, \\u0026lsquo;Gee, when I get to think I will take care of her, I get a headache, I fret, and it is really challenging, and then I was tossed around for a week and get physically and mentally exhausted!\\u0026rsquo; \\u003cstrong\\u003eInterviewer 15\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eOverwhelming and exhausting caregiving experiences make carers believe there is no other support available, compelling them to endure silently while gritting their teeth to persevere.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Aigoo, I don\\u0026rsquo;t know who can serve this kind of people, dirty and tired, who can? so I don\\u0026rsquo;t even think about it. I grit my teeth and hold on to it ...... I don\\u0026rsquo;t think anyone else can do it, so I never think of anyone who can come to me to give me a helping hand, I just grit my teeth and hold on to it.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 17\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eLack of breaks. During the period of caring for people with dementia, caregivers must pay constant attention to and care for older people \\u0026quot;around the clock,\\u0026quot; maintaining heightened vigilance to ensure their safety. There is no time for caregivers to rest.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;I can\\u0026apos;t even go far now because of caring for her. Now I\\u0026apos;ve lost much of my free time, and my daily life just seems to revolve around her?\\u0026rsquo; \\u003cstrong\\u003eInterviewer 4\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe long hours of caregiving place a great deal of psychological pressure on caregivers, and respondents reported that the caregiving routine, which lacks free time, was extremely distressing.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Oops, it\\u0026rsquo;s agonizing, ah, I\\u0026apos;m going crazy ...... I can\\u0026apos;t bear taking care of her like every day ...... There is no easy time in this house all day long.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 12\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eTheme 2: Other family members are the most suitable home respite care providers\\u003c/p\\u003e\\n\\u003cp\\u003eTwo sub-themes informed this theme: (1) \\u0026quot;Distrust of Unprofessional Carers\\u0026quot;; (2) \\u0026quot;Timely and Convenient Support from Other Family Members.\\u0026quot;\\u003c/p\\u003e\\n\\u003cp\\u003eDistrust of unprofessional carers: Several respondents stated that they did not trust nannies, rest homes, or other non-medical professionals. They believed that family members could provide more attentive and considerate care for their older relatives.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Her teeth are not in good condition. She need the rice be made softer to chew, now she eats fine (under my care), but if we hire a babysitter and the person bullies her, (her condition would be different), no one knows about it\\u0026rsquo;\\u003cstrong\\u003e\\u0026nbsp;Interviewer 2\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eIn their view, the challenging work of caring for people with dementia may expose older adults to verbal and physical abuse by non-professional service providers. Additionally, older individuals may not be able to report their abuse experiences promptly due to their cognitive dysfunction.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Generally speaking, it is sure to know that the nanny will reprimand her, but she does not know anything, so beating and scolding is inevitable ...... we spent money and let her get beaten and scolded; it feels unbearable.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 3\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eTimely and convenient support from other family members proves crucial. Based on carers\\u0026apos; experiences, when primary carers face difficulties coping with challenging situations, other family members often provide more accessible and timely assistance than service providers at agencies.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;I especially want someone (to help me). I cannot even pick up her medications when I am alone, even if it\\u0026apos;s in the next room, I cannot get it, that is when I need someone the most. (in this condition) I would call my brothers and nephews to come quickly and help me get the medicine.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 6\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eMoreover, some carers felt hopeless about receiving help from others and believed that only family assistance was reliable.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Because in my mind, a patient like her can only rely on her family, (only families) can understand the bearings, and help her to the best of our ability, it\\u0026apos;s useless to rely on other people.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 4\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eTheme 3: High expectations for professional home respite services\\u003c/p\\u003e\\n\\u003cp\\u003eTwo sub-themes informed this theme: (1) \\u0026apos;Better Quality of Care, Slower Disease Progression\\u0026apos; and (2) \\u0026apos;Expectation of Targeted Help with the Practical Difficulties During Care.\\u0026apos;\\u003c/p\\u003e\\n\\u003cp\\u003eBetter quality of care, slower disease progression. Carers believed that professional in-home respite service providers could deliver higher-quality care services for people with dementia to ensure their quality of life.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;I\\u0026apos;ll help her adjust her mood and comfort her feelings. (I think) A professional would be better sometimes; it would be more effective (if it was down by a professional personnel).\\u0026rsquo;\\u003cstrong\\u003e\\u0026nbsp;Interviewer 6\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eCaregivers had high expectations and perceived that professional, quality care was beneficial in slowing down the progression of dementia among older individuals.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;Older people would feel better if the quality of care is high. Just like my mother, if she is in a better mood, the process of her illness can be slowed down, and I think that is very important.\\u0026rsquo;\\u003cstrong\\u003e\\u0026nbsp;Interviewer 3\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eExpectations for targeted assistance with practical difficulties during caregiving. Respondents indicated that they encountered numerous challenges while providing care and desired professional caregiving services to offer support, such as knowledge counseling and skills guidance that could provide prompt assistance when they faced difficulties.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;If there are any problems during the care, I can go to get some advice, or a professional caregiver can come to my home and guide us.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 7\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eRespondents expected that professional home respite service providers could assist them with medication management. The problem of medication management for people with dementia is more severe than for those with other chronic illnesses, and a lack of caregivers\\u0026apos; supervision often exacerbates these problems.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;My dad reminded her to take her medicine, but she refused to admit that she was sick and got very angry, refusing to take the medication. There was this one time they had a huge fight, and of course, they\\u0026rsquo;d been arguing about it a lot before that too. After that, my dad stopped paying attention to it, and her condition worsened.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 4\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003ePsychiatric symptoms and behavioral difficulties are the primary challenges faced by individuals with dementia and pose significant obstacles for non-professional caregivers. Survey respondents indicated that these psychiatric symptoms and behavioral issues not only intensify the caregiving burden but also cause severe psychological distress for caregivers, who urgently require assistance and professional guidance from healthcare practitioners.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;When he messes with me and causes me stress, I want to run away, and that\\u0026apos;s what happens.\\u0026rsquo;\\u0026nbsp;\\u003cstrong\\u003eInterviewer 5\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eRespondents believed that professional cognitive rehabilitation training could slow down disease progression in older people, especially for those in early stages of dementia, and they urgently hoped that older individuals could receive effective rehabilitation training.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026lsquo;The cognitive rehabilitation, as you guys are talking about, can let her complete some activities, do some crafts, or take part in little games, somethings like that, to let her exercise.\\u0026rsquo; \\u003cstrong\\u003eInterviewer 4\\u003c/strong\\u003e\\u003c/p\\u003e\"},{\"header\":\"Discussion\",\"content\":\"\\u003cp\\u003eThis study aimed to examine the experiences and perceptions of family caregivers who provide care for individuals with dementia, specifically regarding in-home respite services. Through the analysis of semi-structured interviews, three primary themes emerged: 1) the physically and mentally exhausting caregiving experience and urgent need for shared in-home care assistance; 2) other family members serve as the most suitable home respite care providers; 3) high expectations for professional home respite services. These findings underscore the significant challenges of caregiving for people with dementia and highlight the critical gaps in the current caregiving system that require immediate attention.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eUrgent Need for Assistance\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eA central theme in this study was the physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care. Caregivers described caregiving as a continuous and demanding task that left little time for personal breaks. This aligns with existing literature, which consistently highlights the immense burden placed on family caregivers of individuals with dementia[12, 13]. The constant vigilance required to ensure the safety and well-being of individuals with dementia, coupled with the lack of respite, often leads caregivers to burnout. Participants in this study also expressed feelings of isolation and frustration, noting that caregiving duties left them with no time for personal activities or self-care. These findings are consistent with previous research that indicates caregiving without proper respite leads to significant emotional and psychological stress[14].\\u003c/p\\u003e\\n\\u003cp\\u003eImportantly, caregivers in this study also emphasized the significance of people with dementia being cared for in a \\\"familiar living environment\\\"; they believed it was essential for minimizing agitation and confusion in individuals with dementia. This observation supports the findings in previous studies, which suggest that people with dementia experience fewer behavioral problems and better quality of life when they remain in familiar surroundings[7]. Taking this into account, caregivers desired respite care services that would allow them to continue providing care in the home environment.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eThe Role of Other Family Members as Respite Providers\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eAnother major theme was the pivotal role of family members in delivering respite care. Caregivers expressed their preference for relatives to assume caregiving duties, emphasizing familial trust and emotional connections. This theme aligns with findings from other studies that underscore the significance of family support in navigating the intricate demands of dementia caregiving[15, 16].\\u003c/p\\u003e\\n\\u003cp\\u003eCaregivers articulated considerable apprehension regarding non-professional caregivers, such as nannies or private aides, stemming from concerns about care quality. Several caregivers worried that paid caregivers might demonstrate negligence or abuse, particularly since individuals with dementia could not effectively communicate their experiences. This underscores the vulnerability of dementia patients to physical and emotional mistreatment, a well-documented issue in dementia care literature[17]. Consequently, enhanced training and supervision of non-professional caregivers remain essential to ensure dementia patients receive care in a secure environment.\\u003c/p\\u003e\\n\\u003cp\\u003eFurthermore, when family members were accessible, caregivers deemed them more dependable and attentive than external care providers. This perception stems from family members typically serving as the most steadfast and familiar support source. These insights indicate that respite care services should extend beyond professional caregivers to offer guidance and support for family caregivers, facilitating effective collaboration among relatives in caregiving responsibilities.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eHigh Expectations for Professional In-Home Respite Services\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe third prominent theme that emerged was the high expectations for professional in-home respite services. Participants emphasized the need for professional, skilled care providers who could address both the physical and emotional needs of individuals with dementia. This aligns with the findings of Jenkins[18] and Wang[19], who noted that quality caregiving is essential for enhancing the well-being of people with dementia and slowing disease progression. Caregivers in this study specifically mentioned their desire for help with medication management, addressing psychiatric symptoms, and providing cognitive rehabilitation, highlighting the need for comprehensive care models that extend beyond basic physical assistance and focus further on the cognitive and emotional aspects of dementia care.\\u003c/p\\u003e\\n\\u003cp\\u003eCaregivers also expressed a specific desire for guidance and practical advice when confronting caregiving challenges, particularly in managing behavioral symptoms. This aligns with literature that emphasizes the importance of support for caregivers in managing difficult behavioral and psychological symptoms often observed in people with dementia[13]. Participants hoped for access to professional knowledge and skills, whether through direct in-home assistance or consultations, which would help them manage daily caregiving challenges. This finding emphasizes that home respite services must not only provide temporary solutions but also offer long-term support through professional guidance, education, and training for family caregivers.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eImplications for Practice and Policy\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe findings of this study have several important implications for practice and policy in dementia care. First, the urgent need for respite care suggests that healthcare systems should prioritize the development and funding of high-quality in-home respite services to alleviate caregivers' physical and emotional burdens. These services should also ensure that caregivers have access to resources, including training, counseling and practical assistance, empowering them to better manage their caregiving responsibilities.\\u003c/p\\u003e\\n\\u003cp\\u003eIn addition, the findings underscore the importance of family involvement in dementia care. Policymakers and healthcare providers should consider initiatives that facilitate family engagement, such as family-caregiver education programs or peer-support groups. Furthermore, the distrust expressed by caregivers toward non-professional caregivers highlights the need for better regulation and oversight of paid caregiving services. Training and certification should be expanded to ensure that service providers are equipped to meet the unique needs of people with dementia.\\u003c/p\\u003e\\n\\u003cp\\u003eLast but not least, the study indicates the need for integrated care models that combine professional respite services with family caregiving. The combination of family support and professional care could offer a more comprehensive approach to dementia caregiving, reducing strain on family members while ensuring people with dementia receive high-quality care.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eLimitations and Future Research\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThis study has several limitations. The participants were drawn from a specific geographical area, limiting the generalizability of the findings. Future studies should aim to include a more diverse sample, exploring how caregiving experiences differ across various cultural and socioeconomic groups. Additionally, some of the interviews took place in the caregivers' homes, where the presence of the person with dementia occasionally led to interruptions. Caregivers were sometimes called upon to attend to the patients' needs, leading to brief disruptions in the conversation. Although this provided valuable insights into the caregiving dynamics and allowed the researchers to observe the real-time caregiving environment, these interruptions limited in-depth discussions to a certain extent and may have affected the overall depth of the data. These limitations should be considered when interpreting the findings. Future research could address these challenges by employing larger, more diverse samples to provide a more comprehensive understanding of the caregiving experience.\\u003c/p\\u003e\"},{\"header\":\"Conclusion\",\"content\":\"\\u003cp\\u003eThe findings of this study reveal the significant challenges faced by family caregivers of individuals with dementia, particularly the physical and mental exhaustion resulting from the demanding nature of in-home caregiving. Caregivers express an urgent need for support, with many viewing other family members as the most suitable providers of respite care. However, there is also a strong expectation for professional in-home respite services that can offer specialized and targeted assistance. These services are anticipated to help address the unique difficulties encountered in daily dementia care, ultimately improving the quality of life for both the caregiver and the person with dementia. Meeting these expectations through professional support would alleviate the burden on family caregivers, creating a more sustainable caregiving environment and ensuring the well-being of all involved.\\u003c/p\\u003e\"},{\"header\":\"List of abbreviations\",\"content\":\"\\u003cp\\u003eAD Alzheimer\\u0026rsquo;s Disease\\u003c/p\\u003e\\n\\u003cp\\u003eMMSE Mini-Mental State Examination\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003eADL Activities of Daily Living scale\\u003c/p\\u003e\"},{\"header\":\"Declarations\",\"content\":\"\\u003cp\\u003e\\u003cstrong\\u003eEthics approval and consent to participate\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThis study was performed according to the principles of the Declaration of Helsinki. \\u0026nbsp;Ethics committee approval for the study was obtained from the Medical Ethics Committee of Lanzhou University School of Nursing (Decision no: LZUHLXY20230074 Date: March 2, 2023). All participants were aware of the purpose, process, and relevant considerations of the study, voluntarily agreed to participate in this study, and signed an informed consent form.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eConsent for publication\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eAll information about the participants presented in the study was anonymized. The study did not present images, sounds or other personal or clinical details related to them. All study subjects and study participants agree to publish all relevant content.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eFunding\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThis study was supported by the Fundamental Research Funds for the Central Universities(lzujbky-2022-it36).\\u003c/p\\u003e\"},{\"header\":\"References\",\"content\":\"\\u003col\\u003e\\n\\u003cli\\u003eFeng M, Igarashi A, Noguchi-Watanabe M, Yoshie S, Iijima K, Yamamoto-Mitani N. Characteristics of care management agencies affect expenditure on home help and day care services: A population-based cross-sectional study in Japan. Geriatr Gerontol Int. 2017;17(11):2224-31.\\u003c/li\\u003e\\n\\u003cli\\u003evon Kutzleben M, Reuther S, Dortmann O, Holle B. Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting. Health Soc Care Community. 2016;24(3):283-96.\\u003c/li\\u003e\\n\\u003cli\\u003eVandepitte S, Putman K, Van Den Noortgate N, Verhaeghe N, Annemans L. Cost-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia: A model-based analysis. Int J Geriatr Psychiatry. 2020;35(6):601-9.\\u003c/li\\u003e\\n\\u003cli\\u003ePhillipson L, Jones SC. \\u0026quot;Between the devil and the deep blue sea\\u0026quot;: the beliefs of caregivers of people with dementia regarding the use of in-home respite services. Home Health Care Serv Q. 2011;30(2):43-62.\\u003c/li\\u003e\\n\\u003cli\\u003eSkarupski KA, McCann JJ, Bienias JL, Wolinsky FD, Aggarwal NT, Evans DA. Use of home-based formal services by adult day care clients with Alzheimer\\u0026apos;s disease. Home Health Care Serv Q. 2008;27(3):217-39.\\u003c/li\\u003e\\n\\u003cli\\u003eDurand M, James A, Ravishankar A, Bamrah JS, Purandare NB. Domiciliary and day care services: Why do people with dementia refuse? Aging Ment Health. 2009;13(3):414-9.\\u003c/li\\u003e\\n\\u003cli\\u003eMoholt JM, Friborg O, Blix BH, Henriksen N. Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway. Dementia (London). 2020;19(5):1712-31.\\u003c/li\\u003e\\n\\u003cli\\u003eHogan L, Boron JB, Masters J, MacArthur K, Manley N. Characteristics of dementia family caregivers who use paid professional in-home respite care. Home Health Care Serv Q. 2022;41(4):310-29.\\u003c/li\\u003e\\n\\u003cli\\u003eE OS, Timmons S, E OS, Fox S, Irving K. Respite in Dementia: An Evolutionary Concept Analysis. Dementia (London). 2019;18(4):1446-65.\\u003c/li\\u003e\\n\\u003cli\\u003eVandepitte S, Van Den Noortgate N, Putman K, Verhaeghe S, Annemans L. Effectiveness and cost-effectiveness of an in-home respite care program in supporting informal caregivers of people with dementia: design of a comparative study. BMC Geriatr. 2016;16(1):207.\\u003c/li\\u003e\\n\\u003cli\\u003eNegr\\u0026iacute;n MA, Pinilla J, Le\\u0026oacute;n CJ. Willingness to pay for alternative policies for patients with Alzheimer\\u0026apos;s Disease. Health Econ Policy Law. 2008;3(Pt 3):257-75.\\u003c/li\\u003e\\n\\u003cli\\u003ePapastavrou E, Kalokerinou A, Papacostas SS, Tsangari H, Sourtzi P. Caring for a relative with dementia: family caregiver burden. J Adv Nurs. 2007;58(5):446-57.\\u003c/li\\u003e\\n\\u003cli\\u003eKim B, Noh GO, Kim K. Behavioural and psychological symptoms of dementia in patients with Alzheimer\\u0026apos;s disease and family caregiver burden: a path analysis. BMC Geriatr. 2021;21(1):160.\\u003c/li\\u003e\\n\\u003cli\\u003eStirling C, Andrews S, Croft T, Vickers J, Turner P, Robinson A. Measuring dementia carers\\u0026apos; unmet need for services--an exploratory mixed method study. BMC Health Serv Res. 2010;10:122.\\u003c/li\\u003e\\n\\u003cli\\u003eSmith L, Morton D, van Rooyen D. Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia. J Psychiatr Ment Health Nurs. 2022;29(6):861-72.\\u003c/li\\u003e\\n\\u003cli\\u003eFung WY, Chien WT. The effectiveness of a mutual support group for family caregivers of a relative with dementia. Arch Psychiatr Nurs. 2002;16(3):134-44.\\u003c/li\\u003e\\n\\u003cli\\u003eFang B, Yan E. Abuse of Older Persons With Dementia: A Review of the Literature. Trauma Violence Abuse. 2018;19(2):127-47.\\u003c/li\\u003e\\n\\u003cli\\u003eJenkins C, Feldman G. Recognition of preclinical signs of dementia: A qualitative study exploring the experiences of family carers and professional care assistants. J Clin Nurs. 2018;27(9-10):1931-40.\\u003c/li\\u003e\\n\\u003cli\\u003eWang N, Albaroudi A, Chen J. Decomposing Urban and Rural Disparities of Preventable ED Visits Among Patients With Alzheimer\\u0026apos;s Disease and Related Dementias: Evidence of the Availability of Health Care Resources. J Rural Health. 2021;37(3):624-35.\\u003c/li\\u003e\\n\\u003c/ol\\u003e\"}],\"fulltextSource\":\"\",\"fullText\":\"\",\"funders\":[],\"hasAdminPriorityOnWorkflow\":false,\"hasManuscriptDocX\":true,\"hasOptedInToPreprint\":true,\"hasPassedJournalQc\":\"\",\"hasAnyPriority\":false,\"hideJournal\":true,\"highlight\":\"\",\"institution\":\"\",\"isAcceptedByJournal\":false,\"isAuthorSuppliedPdf\":false,\"isDeskRejected\":\"\",\"isHiddenFromSearch\":false,\"isInQc\":false,\"isInWorkflow\":false,\"isPdf\":false,\"isPdfUpToDate\":true,\"isWithdrawnOrRetracted\":false,\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"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, Alzheimer’s Disease, In-Home Respite Care, Family Caregiver, Home Care, Family Care, Qualitative Study\",\"lastPublishedDoi\":\"10.21203/rs.3.rs-6282727/v1\",\"lastPublishedDoiUrl\":\"https://doi.org/10.21203/rs.3.rs-6282727/v1\",\"license\":{\"name\":\"CC BY 4.0\",\"url\":\"https://creativecommons.org/licenses/by/4.0/\"},\"manuscriptAbstract\":\"\\u003cp\\u003eBackground and Objectives: The family carersof people living with dementia face significant physical and emotional strain due to the constant supervision and care required by their loved ones. While in-home respite care is recognized as essential for alleviating caregiver burden, there is considerable variation in service provision across countries. Family caregivers often lack clarity on the types of support needed, and existing research on their expectations is limited. This study aims to explore the views and expectations of family caregivers regarding in-home respite care services, to better understand their needs and inform the development of more effective, tailored services.\\u003c/p\\u003e\\n\\u003cp\\u003eMethod: Through purposive sampling, family caregivers of people with dementia from two provincial cognitive impairment centers in Lanzhou City, Gansu Province, were invited to participate in face-to-face semi-structured interviews to determine theirviews and expectations toward in-home respite services. Thematic analysis was applied, and the interview content was transcribed, organized, and analyzed using Nvivo-12.0 software.\\u003c/p\\u003e\\n\\u003cp\\u003eResults: A total of 15 primary family caregivers of people with dementia were interviewed, yielding three themes: 1) the physically and mentally exhausting caregiving experience and urgent demand for assisted shared in-home care; 2) other family members are the most suitable home respite care providers; 3) high expectations for professional home respite services.\\u003c/p\\u003e\\n\\u003cp\\u003eConclusion: The primary family caregivers of persons with dementia have an urgent need for assistance when caring for their loved ones at home, and they have high expectations for professional home respite services. They expect that in-home respite service providers can deliver targeted assistance to address problems encountered in their daily care, helping ensure the quality of life for both their family members and themselves.\\u003c/p\\u003e\",\"manuscriptTitle\":\"\\\"I need help from other family members\\\" Views and expectations of family carers of people living with dementia on in-home respite care in Northwest China\",\"msid\":\"\",\"msnumber\":\"\",\"nonDraftVersions\":[{\"code\":1,\"date\":\"2025-05-29 10:01:43\",\"doi\":\"10.21203/rs.3.rs-6282727/v1\",\"editorialEvents\":[{\"type\":\"communityComments\",\"content\":0}],\"status\":\"published\",\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"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\":\"5d40272d-7079-4419-978a-13becf6f19f1\",\"owner\":[],\"postedDate\":\"May 29th, 2025\",\"published\":true,\"recentEditorialEvents\":[],\"rejectedJournal\":[],\"revision\":\"\",\"amendment\":\"\",\"status\":\"posted\",\"subjectAreas\":[],\"tags\":[],\"updatedAt\":\"2025-11-09T09:38:20+00:00\",\"versionOfRecord\":[],\"versionCreatedAt\":\"2025-05-29 10:01:43\",\"video\":\"\",\"vorDoi\":\"\",\"vorDoiUrl\":\"\",\"workflowStages\":[]},\"version\":\"v1\",\"identity\":\"rs-6282727\",\"journalConfig\":\"researchsquare\"},\"__N_SSP\":true},\"page\":\"/article/[identity]/[[...version]]\",\"query\":{\"redirect\":\"/article/rs-6282727\",\"identity\":\"rs-6282727\",\"version\":[\"v1\"]},\"buildId\":\"8U1c8b4HqxoKbykW_rLl7\",\"isFallback\":false,\"isExperimentalCompile\":false,\"dynamicIds\":[84888],\"gssp\":true,\"scriptLoader\":[]}","source_license":"CC-BY-4.0","license_restricted":false}