Integrated Care Services for Dementia and Their Challenges from a Nursing Home Perspective: An Ethnographic Study

Study Design

Ethnography is about telling credible, rigorous, and authentic stories. It gives voice to people in their local context, typically relying on verbatim quotations and a “thick” description of events [21]. This study was conducted according to principles of focused ethnography [22], as it enables exploration of a particular issue in a specific setting which means it focuses on subcultural groups having particular traits rather than the whole societies. It is a recommended method in conducting older people research [23] as it allows a deep understanding of a particular question and context and is carried out in an everyday setting. We adopted an ethnography approach to comprehensively analyze the current situation and challenges of integrated care. Data were gathered using semi-participatory observation and interviews.

Study Setting

A nursing home in an economically thriving district of urban Suzhou, Jiangsu province, China, was selected as the study site. It adopted the care model that provided integrated services, including activities of daily life care, medical care, rehabilitation, etc. This model was referred to in China as “the Combination of medical and elderly care” [24]. Residents could obtain specialized care resources, however, the relationships between the nursing home and dementia specialist clinics were still under development, which was known as the Medical Consortia [24]. For older adults who had a need for accommodation and met the admission standards of nursing homes, they could apply to be admitted. Families of residents could visit them according to their needs. Overall, there were 26 nurses, 6 doctors, and 63 nursing aides. There were 157 residents, aged 70~104 years; 63 males (40.13%); and 127 (80.89%) with more than three kinds of chronic diseases. Forty-eight residents had dementia; 24 had Alzheimer’s disease; 8 had vascular dementia; 13 had cognitive dysfunction; 2 had Parkinson’s disease with dementia; and one had Lewy body dementia.

Participants

A purposive sampling method was used to select service providers for observation and interview. The inclusion criteria were as follows: 1) formal caregivers such as nursing aides, doctors, nurses, and rehabilitation therapists, who were responsible for the diagnosis, treatment, care, or management of residents living with dementia; 2) with more than 1 year of work experience with dementia; 3) able to communicate well; and 4) volunteered to participate in this study. Service providers were excluded if they expressed they could not answer any of the interview questions according to their knowledge and experience. Eighteen service providers were asked to participate in the observation and interview, and two nursing aides were excluded. Finally, 16 service providers were included in the observation and interview.

A purposive sampling method was used to select residents for observation. The inclusion criteria were as follows: 1) residents living with dementia or those residents with other chronic conditions living in an environment with them; and 2) the willingness to participate in this study were obtained from their families for residents living with dementia or from residents with other chronic conditions. Twelve residents participated in this study.

Saturation, a widely accepted concept in qualitative research, refers to the point at which further data collection and analysis are unnecessary based on the data collected or analyzed thus far [25, 26]. In our study, after observing 12 residents, and observing and interviewing16 caregivers, there were no new categories generated from them, so the data collection stopped.

Theoretical Framework

RMIC included two scopes (person-focused vs. population-based), six types (system, organizational, professional, and clinical integration) and two enablers (functional and normative integration) [20, 27]. The population-based scope was defined as residents living with dementia, and the person-focused scope was actually a norm and therefore was included in the normative integration. Two enablers acted as connectors across processes, facilitating collaboration among professionals, organizations, and systems to deliver integrated care, and were therefore included among the types of integration. Besides, this study was designed to focus on service level, so the observation and interview would be targeted at the organizational, professional and clinical levels as it was difficult to address system-level issues. Further, we discussed and identified the main elements from key literature that systematically reviewed the possible elements of these dimensions [28, 29, 30]. These dimensions and elements were used to design the observation and interview outlines, and to frame the current situation and challenges. Taking organizational functional position as an example, empirical questions were designed as: “How many organizations are related to integrated care services for dementia?”, “What are their function?”, and “How do these organizations coordinate with each other?” The questions were basically designed to be broad opening, which would prioritize the storytellers’ perspective.

Data Collection Procedures

After obtaining informed consent from the nursing home administrators, the researcher entered nursing home as an “internship nurse” to collect data from June to August 2022.

Four head nurses were key informants who knew nursing home’s overall operation and arranged the researcher to carry out the observation. The researcher observed and interacted with the individuals in their presence. The researcher first made a descriptive observation of surrounding environment and communicated with residents and caregivers to establish trusting relationships. After obtaining informed consent from participants, formal observation was initiated. The researcher participated in daily care activities, chatting with them, taking them for a walk, etc., following service providers as they performed daily work. The researcher described the characteristics of every observation, such as location, time, date, etc., and took quick notes on the events. The data were collected through recording and photography and reflections were written within 24 hours after each observation. The researcher conducted a total of 58 observations. The observational data to be analyzed comprised nearly 30, 000 Chinese words and 35 photos.

Due to the impaired cognitive ability of the residents, they were not invited for interviews. The participants controlled the direction, content and pace of the interview, and the researcher listened and gently redirected them if their narratives deviated significantly from the aim of this study. The questions could be adjusted flexibly in their order in the interview. The interviews were transcribed verbatim within 24 hours and transcripts were returned to the interviewee for correction before data analysis. Nearly 80, 000 words were transcribed.

Data Analysis

A deductive analysis was used to examine the integrated care services, and both deductive and inductive analysis were used to identify the challenges. Both shared the same preparation phase as follows. The researcher repeatedly listened to the recorded conversations, read field notes, transcribed interview texts, and classified the text into smaller content categories. Keywords, phrases, and sentences related to dementia care in field notes and interview texts were extracted and coded. To understand the current situation and challenges of integrated dementia care, all the data were reviewed for content and coded for correspondence with dimensions and elements in RMIC. Those challenges unfit with the main elements were used to create their categories based on the principle of inductive analysis, and mapped into the threatened dimensions of RMIC. The researcher read the material and wrote notes and headings in the text to generate initial coding. Codes with the same attributes were assigned to the same category. Then the lists of categories were grouped under higher order headings by comparing their similarities and differences. Data analysis started from choosing the subject to the completion of the research manuscript [21]. During the research period, data sorting and analysis were performed simultaneously and iteratively. Nvivo 12 Plus was used to assist in managing the data.

Consideration of Rigor

Triangulation is a method used for trustworthiness and to enhance the validity and rigor of data analysis in qualitative research, especially in ethnography [21, 31]. There are four types of triangulations proposed by Denzin [32], and the methodological and investigator triangulation were adopted in this study. First, the interview and observation methods were employed to ensure comprehensive data collection and analysis. Second, the design, data collection, analysis, findings and interpretations were carefully considered and discussed among the research team to improve the study’s transparency. Third, an external check on the preliminary findings and interpretations was performed, with the help of nursing home administrators and specialists from tertiary hospitals. They read the results and provided valuable insights to make results truly close to the reality. We also adopted the trustworthiness measures to increase the validity of analysis and results by using authentic citations without disclosing participants’ identities [33].

Ethics Approval and Consent to Participate

This study was approved by the Research Ethics Committee of Soochow University. As outlined in the Declaration of Helsinki, the study followed appropriate ethical standards.

Before and throughout the study, the researcher posted an introduction to this study in the public activity area of nursing home to inform residents and service providers. Anyone unwilling to be observed could contact us. Then, based on the recommendations of key informants, we preliminarily determined residents and service providers to be included in the study. For residents living with dementia, during family visits, we fully informed their families of the research purpose, the form of data collection, and how to withdraw from the study. After obtaining their informed consent, we began the observation. For residents living with other chronic conditions, the informed consent were obtained from themselves after the information above were told. For service providers, we began the observation and recorded the interview after informing them of the same information and obtaining their informed consent. All participants (family members for residents living with dementia) understood that participation was voluntary, that consent could be withdrawn at any time and without their rights harmed. This manuscript did not contain identifiable information. The manuscript was also reviewed by the nursing home administrators, who agreed for it to be published.

Participants Characteristics

The characteristics of observed and interviewed participants are presented in Tables 1 and 2.

The Description of Integrated Care Services

The Combination of Medical and Elderly care, and Medical Consortia were two main integrated care services. Hospital X and the elderly care institution were integrated into this nursing home, forming what is known as the Combination of Medical and Elderly Care. Additionally, Hospital X and dementia specialist clinic formed a Medical Consortia relationship. Clarification about these services and their relationships is presented in Figure 1. The implementation details at organizational, professional, and clinical levels are presented in Supplementary 1.

Figure 1

The Challenges of Integrated Care Services

Eighteen challenges that threatened dementia integrated care were identified, 4 at the organizational level, 8 at the professional level, and 6 at the clinical level.

Organizational Integration

Challenge 1: Unformed formal relationships with dementia specialist clinics. The nursing home relied on the Medical Consortia between Hospital X and dementia specialist clinics to receive related services. It had not yet established formal relationships with dementia specialist clinics.

Challenge 2: No substantial benefits-sharing mechanism. An agreement were usually signed between two parties, with their responsibilities and obligations described. The nursing home could provide people-centered services and improve their service capabilities through the guidance of specialist clinics from tertiary hospitals, and nursing home would transfer severe patients, who were unable to serve by the nursing home, to tertiary hospitals. However, tertiary hospitals were more driven by their public welfare and social responsibility to provide guidance. The lack of substantial benefits made many existing Medical Consortia a mere formality.

Challenge 3: Incoordination of resources. Residents could visit dementia specialists from tertiary hospitals, both online and offline. However, the resources, such as medical technology, drugs, medical equipment, and manpower, had not been used coordinately, which greatly reduced the function of Medical Consortia and also did not align with the people-centred approach.

Challenge 4: Goals stuck in the agreement. Although the goals and values of Medical Consortia were described in the agreement, the lack of benefits-sharing mechanism between both parties made the goals and values of Medical Consortia difficult to maintain and finally turned them into empty slogans.

Professional Integration

Challenge 1: Incomplete team structure. Non-pharmacological interventions were very important for maintaining residents’ cognitive function and quality of life, which mainly relied on nurses and nursing aides to conduct after they finished their work. Non-pharmacological interventions should be planned and organized by social workers systematically. However, this position was vacant, hindering the accessibility and continuity of non-pharmacological interventions.

Challenge 2: Shortage of human resources. The low social status associated with working in nursing homes and complex symptoms of dementia led to a shortage of human resources, such as nursing aides, nurses, doctors, which seriously affected the provision of people-centered services.

Challenge 3: Low level of knowledge. Whether professionals with medical backgrounds or nursing aides with low education levels, they had certain ability deficiencies in dementia care services, such as non-pharmacological interventions, care skills, etc.

Challenge 4: Low quality of nursing aides. Nursing aides, who were the primary caregivers for residents living with dementia, lacked skills in daily care and managing behavioral and psychiatric symptoms of dementia. In addition, their low education level and insufficient ability to receive knowledge made improving their abilities very challenging.

Challenge 5: Continuous impact of COVID-19. Nursing home was often in a semi-closed state because of COVID-19. Related psychological care activities could only be dependent on professionals in nursing home. Volunteers were unable to enter nursing home for caring activities due to occasional outbreaks of the epidemic.

Challenge 6: Lack of active participation among dementia specialists. Regular public lectures and consultations were potential way of improving ability of professionals from nursing homes, however, the loss of performance evaluation and assessment made knowledge sharing between them lack sustainability and stability.

Challenge 7: No standards and norms of non-pharmacological interventions. Non-pharmacological interventions were limited to dementia programs and usually conducted by researchers. Standards and norms of non-pharmacological interventions were lacking, mainly reflected in service contents and evaluation mechanisms. This made it difficult to apply non-pharmacological interventions to clinical practice, as staff were unable to perceive their effects and gradually lost interest in implementing them.

Challenge 8: Lack of performance evaluation. Although Medical Consortia were formed in response to national calls, policies, etc., when put into practice level, professionals had to devote time and labor. The work done by dementia specialists was often of a public welfare nature, which meant their performances were not assessed, evaluated, or linked to their salary and professional title promotion. This was not conducive to enhancing their enthusiasm and making the support and guidance to nursing homes difficult to maintain.

Clinical Integration

Challenge 1: Lack of a coherent process. A relatively single or coherent process for residents living with dementia had not been formed, such as case management and individual multidisciplinary care plans, which made it impossible to create and share individual care plans among care teams and family members.

Challenge 2: Uncertain interventions after comprehensive geriatric assessment. The comprehensive geriatric assessment was conducted according to the evaluation criteria for older-adult-friendly hospitals, which also included the evaluation of cognitive function. However, the standards and norms for further interventions were not clear at the clinical level, which made the comprehensive geriatric assessment gradually stop.

Challenge 3: Temporary caregivers. The high mobility of nursing aides and the temporary nature of dementia specialists made comprehensive and individualized care plans based on residents’ conditions (socioeconomic status, past experience, etc.) largely interrupted. These highly threatened continuous care.

Challenge 4: Irreplaceable affection function of families. The relationships between residents and their families were indivisible. It may be largely due to the severe impairment of their recent memory, and residual long-term memory made their mental world only contain past people and events, such as their youth and family. This kind of need was difficult to transfer or replace with activities or the companionship of caregivers, which often made caregivers feel there was nothing they could do.

Challenge 5: Forced reduction in social interaction. Residents living with dementia may experience behavioral and psychiatric symptoms, such as delusions, hitting, etc., which may cause them to be prejudiced and discriminated against by residents with other chronic conditions, and force their social interaction to decrease.

Challenge 6: Inactive participation of family members. When residents experienced cognitive impairment, they lost full civil autonomy. However, inactive participation of family members in decision-making, care planning, companionship, etc., hindered residents from getting personalized and proactive care, and other medical and health services.

Enriching the Application Of RMIC

In our study, RMIC facilitated a logical and theoretical exploration of integrated care services for residents living with dementia. RMIC was used to summarize the evidence, clinical provision and progress towards integrated primary care and social services for older adults with multimorbidity in a previous study [34], and the evidence were refined into micro, meso and macro level. In Beaudin’s study, only clinical integration was applied to older adults with chronic diseases according to the research aim [35]. It could be seen that RMIC had been used flexibly and also had strong theoretical applicability, and our study further enriched it in its scope of application in dementia care services in nursing home settings.

Drawing on Chinese Wisdom to Advocate and Improve Integrated Dementia Care Services

The two main integrated care services were received by residents living with dementia in nursing homes in China. Combination of Medical and Elderly care could provide activities of daily life care, rehabilitation, medical care of common chronic disease etc., and Medical Consortia could help residents obtain specialized medical services, from the collaboration of various institutions and professionals. How these institutions and professionals worked with each other were described in a detailed manner, which could draw on Chinese wisdom to provide people-centered services for residents living with dementia in nursing homes. Prior research has shown uncertainty regarding the effectiveness of integrated care in nursing homes and other institutions [36, 37], which may threaten the idea of advocacy for integrated care in nursing homes. In this study, accessibility, comprehensiveness, coordination, and continuity of services, and meeting residents’ needs were used as criteria to determine the challenges. Although we did not have quantitative data to accurately measure the effectiveness of integrated care, the gaps between these criteria and reality were identified as challenges and could be used to improve the services. Therefore, by addressing how integrated care services are delivered and identifying associated challenges, our findings offer valuable insights for researchers, managers, and policymakers aiming to enhance integrated dementia care services in nursing homes and ultimately improve the experiences of residents.

Providing Multilevel Targets to Improve Services

This study identified challenges that threatened dementia integrated care across organizational, professional, and clinical perspectives, totally 18 challenges: 4 at the organizational level, 8 at the professional level, and 6 at the clinical level. A scoping review revealed that integrated care for older adults with multiple chronic diseases typically addresses only the clinical level, with only 35% of studies considering micro, meso, and macro levels [34, 35]. However, successful examples of integrated care in nursing homes indicate that comprehensive integration across all levels can mitigate fragmentation risks and prevent service users from ‘falling between the cracks’ of care [12]. The challenges identified across these three levels underscore the practical significance of promoting dementia integrated care.

Developing Strategies from the Professional and Clinical Levels to Improve Combination of Medical and Elderly Care

It mainly faced challenges from professional and clinical integration instead of organizational integration. In the context of this study, the nursing home represented a tightly integrated system originating from a secondary hospital and elderly care institutions, and formed an integrated management system. Therefore, there were no organizational challenges from them. However, issues such as the structure, quantity, and quality of professionals, as well as external environmental changes, posed threats to professional integration. Additionally, the lack of a coherent process, the irreplaceable role of family affection and forced reductions in social interaction, threatened clinical integration. First, the foremost challenge in professional integration was the shortage of social workers. Social workers play a crucial role in enhancing the continuity and coordination of interventions for older adults living with dementia through the use of case management [38]. Across different countries, the minimum standards of healthcare professions for collaborative dementia care in primary care settings involved social workers [39]. Addressing this shortfall is pivotal for improving practice. Second, there was a shortage of professionals both in terms of quality and quantity. The lower social status and salaries are pervasive issues observed in the field. Government bodies should leverage social media to shape public opinion, advocating societal support for older adults and their caregivers, thereby enhancing the social standing of elderly care professionals. Measures to bolster professional stability should include improvements in salaries and social insurance policies [40, 41]. Finally, the indispensable role of family affection among residents echoes findings from previous studies [42]. In traditional Chinese culture, values such as filial piety and family reunion hold deep significance, driving a strong desire among older adults to reunite with their families. Therefore, caregivers and managers could engage family members in care by emphasizing family participation, instituting relevant policies, and strengthening research on family participation interventions.

Establishing a Benefits-Sharing Mechanism was Crucial for the Success of Medical Consortia

Medical Consortia, a coordination between tertiary hospitals and nursing homes, were under construction and faced challenges across three levels, particularly at the organizational level, such as unformed formal relationships with dementia specialist clinics, no substantial benefits-sharing mechanism, and goals stuck in the agreement. China has made tremendous efforts with Medical Consortia construction through national-level policies and pilot projects in various regions. The first Medical Consortia in China was signed and launched in the Luwan District of Shanghai in 2011, and the National Health Commission publicly released the Management Measures for Medical Consortia in 2020 to promote its development [16]. However, this study found that despite a decade of efforts, the development of Medical Consortia in China has not been optimistic. The primary concern that threatened its effectiveness was the absence of a benefits-sharing mechanism at the organizational level. Benefits extend across the organizational, professional, and clinical levels, serving as the driving force behind the collaboration among various stakeholders. The absence of a benefits-sharing mechanism at the organizational level will directly lead to difficulties in resource sharing among institutions (such as coordinating dementia treatment drugs), professionals’ lack of performance evaluations and unwillingness to participate, and finally affected the service provision. Previous experience has also shown that improving integrated care within existing systems is highly challenging and requires substantial time for continuous adaptation and transformation [34]. Therefore, it takes time to achieve genuine and beneficial coordination between nursing homes and other organizations. Policymakers and researchers should intensify discussions on establishing a substantive benefits-sharing mechanism, while the government should strengthen supervision and assessment of the organizations involved.