Family caregivers' experiences of interaction with people with mild‐to‐moderate dementia in China: A qualitative study

Abstract Aim This study aimed to explore the experiences of family caregivers interacting with people with dementia. Background A majority of people with mild‐to‐moderate dementia live at home with family caregivers. This interaction creates positive experiences and challenges for these caregivers. Design Descriptive phenomenological qualitative inquiry guided this study. Methods This qualitative study involved semi‐structured interviews with the caregivers of people with mild‐to‐moderate dementia (n = 10). Data were collected from June to September 2018, and then data were thematically analysed. Results Six categories of themes were identified from the interviews: (1) unexpected things often happen; (2) positive coping strategies; (3) sense of accomplishment because people with dementia actively participate in activities; (4) sense of frustration because of the reluctance of people with dementia to participate in activities; (5) hope for the happiness of people with dementia; and (6) want to have their own life. Conclusions This study reveals that caregivers could positively interact with people with dementia through creating opportunities and arranging meaningful activities. Future research should focus on family management and training on how to help caregivers interact effectively with people with dementia.

• Caregivers stated that they wanted people with dementia to be happy and live their life. Thus, the caregivers changed their attitude, accepted the situation and organized meaningful activities for people with dementia.
• Caregivers employed various strategies for handling situations involving people with dementia and shared how they interacted with such individuals.
The implications of this paper: • Care organizations that can offer certain services for people with dementia should be developed to lessen caregivers' burden.
• Community nurses should develop caregivers' strengths and enhance their abilities to improve interaction with people with dementia.
• Future research should focus on family management and training on how to help caregivers interact effectively with people with dementia.

| INTRODUCTION
In 2018, over 50 million people with dementia (PwD) were reported worldwide, approximately 60% of whom are from developing countries, with the fastest growth in China (Prince et al., 2013;Winblad et al., 2016). Dementia is an incurable and progressive brain disease that typically causes cognitive impairment, communication difficulties and behavioural changes that often require lifelong assistance (WHO, 2016). At present, China has not established a long-term care insurance system (Guo, 2017). The care for PwD is mainly provided at home; the caregivers are mainly from spouses, children, brothers and sisters in China (Dong, Guo, & Zhao, 2017). With an increasing aging population and an underdeveloped welfare infrastructure, Chinese family caregivers will encounter great challenges in rendering care for PwD (Sun, 2014). Thus, these conditions need the support of the family as a whole, and emphasis is placed on family harmony.
Many studies have shown that many caregivers suffer from depression, anxiety (Joling et al., 2015), fatigue, sleep disturbance (Liu et al., 2018;Villapando, 2015), family conflicts (Liddle et al., 2016) and low levels of life satisfaction. Hence, caregivers should find some strategies to alleviate their own physical and mental health. Previous qualitative studies examined the following values of caregivers and PwD: family and social relationships, safety and physical health, emotional well-being, support for care needs and daily functioning, related services, medical care, support networks and meaningful activities (Heinrich, Uribe, Wübbeler, Hoffmann, & Roes, 2016;Macrae, 2010;Phinney, Chaudhury, & O'Connor, 2007). Furthermore, the positive and negative aspects of caregiving are of the same continuum-they could influence caregiver well-being and satisfaction with life (Lethin et al., 2017). As the patient's cognitive function declines, communication and physical function decline; therefore, achieving positive social interactions becomes challenging (Mabire, Gay, Vrignaud, Garitte, & Dassen, 2016). In addition to accepting the situation, caregivers should adopt positive attitudes and create opportunities for PwD to engage in meaningful activities. Participating in meaningful activities positively influences the well-being of PwD (Söderhamn, Landmark, Eriksen, & Söderhamn, 2013).
Interaction patterns, including preferred manner of expressing themselves and describing expectations on how each person behaves and reacts to one another, are established between caregivers and PwD through mutual support (Karner & Bobbitt-Zeher, 2005;Lethin et al., 2017). Some meaningful interactions, such as housework (e.g., washing and cleaning), family games, handicrafts and outdoor activities (e.g., gardening and doing exercises), can be

| Design
A descriptive phenomenological qualitative study was undertaken (Maxwell, 2013;Weaver & Olson, 2006). This approach lends to a deep understanding of the experience of caregivers who interact with PwD. An initial open-ended question encouraged the caregivers to describe daily activities with PwD.

| Participants
Caregivers of people with mild-to-moderate dementia were recruited from the Department of Neurology and Mental Health in Hangzhou in Zhejiang Province, China, and considered study participants in accordance with the following inclusion criteria: (1) age of 18 years and above; (2) main care for PwD (mild to moderate) of >3 months; and (3) at least 3 h of daily care for PwD.
Telephone contact was attempted for 23 eligible caregivers, and 10 caregivers completed the interviews. Eight women and two men from Hangzhou participated in this study. All were family caregivers for people with mild-to-moderate dementia. The duration of their experience with care services varied from 2 to 15 years. Seven family caregivers lived with the PwD in one flat; three lived separately from the PwD but within the same city. Data saturation being the guiding principle in sampling, the last interview analysed provided no new insights.
The characteristics of caregivers are displayed in Table 1. The interviewer explained the purpose of the interview and discussed the caregiver's right to discontinue at any time for any reason.

| Data collection
Interview data were collected by audio recording. Interviews were conducted at the preferred time and place of the caregivers to provide a suitable environment for sharing their experiences. Once analyses were completed, a summary of the results was sent to the caregivers to request revisions.
Data were collected from June to September 2018 by an experienced nursing teacher who is a member of the research team. Interviewees who agreed to meet the researcher were contacted to arrange a convenient location and date. Eight interviews were conducted in participants' homes and two at the memory clinic. Interviews were conducted in a quiet room and lasted 30-45 min.

| Data analysis
Interview recordings were transcribed, and the transcripts were read and analysed by the study team. A coding framework was developed through thematic analysis (Braun & Clarke, 2006). The study team became familiarized with the data by repeatedly listening to the interview recordings during transcription and repeatedly reading the transcripts. Memos were written to record the initial interpretation of each interview. The data were then stored and coded in NVivo9. In order to maintain qualitative rigour, two researchers independently coded the transcripts, compared and refined their coding categories and developed the themes. Initial codes were developed by collecting data with similar contents and subsequently converted into concepts and themes. Themes were generated and refined through an ongoing analysis. The process of refining the themes was thoroughly documented with the coding scheme developed before deciding on the best for the data.

| Ethical considerations
Data collection was conducted after obtaining approval from the ethics committee institutional review board of the affiliated hospital of the university where the second author worked. Informed consent was obtained from each participant before the data collection.
The participants voluntarily participated in this study and were informed of their rights to anonymity and confidentiality. The study was approved by the corresponding ethics committees of the institutions involved (The First Affiliated Hospital of Zhejiang Chinese Medical University, No. 2017-KL-071-01). The participants were informed that the participation was voluntary and confidential and that they could withdraw from the study any time without explanation. At the start of the study process, they signed an informed consent form and agree to the recording. Recording materials are given strict confidentiality.

| RESULTS
After the interview data were analysed, six core categories describing the family caregiver's experiences of interacting with PwD were identified. Table 2 shows the six themes.
3.1 | Theme 1: Unexpected things often happen The caregivers experienced difficulty in anticipating possible problems or situations and establishing a strategy on how they and their family would handle PwD as their illness progressed. According to some caregivers, they had never been prepared for future occurrences, and this unpreparedness prevented them from creating appropriate plans.

| Theme 4: Sense of frustration because of the reluctance of PwD to participate in activities
PwD exhibited psychological changes, such as apathy, lack of inhibition and anger, and these changes influenced the caregivers. In some instances, PwD became less socially active than before. Caregivers also experienced frustration and difficulty when interacting with PwD.
Sometimes, she became suddenly unhappy, stayed in her room, did not want to go out, and did not listen to my advice. It disrupted our original plan.
(Husband, 6) According to some caregivers, PwD were uninterested in some things that they used to do every day. In some cases, caregivers experienced difficulty in communicating with them.
He has been reading newspapers for two hours every day and discussing current affairs with me since he retired. Now, he seldom responds to me if I give comments on some things on the TV or in the newspaper that he is not interested in. (Wife, 4) Some caregivers cried when they were talking about apathy of PwD.
PwD were less interested in some activities in their daily lives, and this condition was also considered a burden.
She is at home all day, but she refuses to do housework and simply sits in a balcony in a daze.
This situation will worsen, but we have no choice. Caregivers have prepared to overcome their challenges and attempted to change their attitude to maintain mental balance.
Their goal was to create a different lifestyle with acceptable conditions. I hope that she will have memories of good travel even if it would be tiring. I think that she will enjoy her time even for a moment. (Mother, 7) Happiness for PwD was also expressed as moments of joy and comfort. They sometimes had fun in simple ways.
My mother likes to make bags and give them to our relatives. We would readily accept as long as she feel happy, although she creates more bags and making them seems tiring. (Daughter, 5) Some of the caregivers described that provided PwD a greater sense of freedom and allowed them to be more focused on interacting with caregivers.
The goal I have is to keep my husband feel happy, so I want to live with him for as long as I live. (Wife, 3) 3.6 | Theme 6: Want to have their own life Some caregivers described how they need to find balance in their lives to be able to maintain relationships with other family members and friends. Caregivers had to stop previous hobbies and expressed a sense of loss when they had discontinued their previous activities.
They also wanted to have some spare time to do things for themselves.
My husband and I have retired recently. We could have had enjoyed our retirement life. We could travel around if not for her. 9) Caregivers also reported that their relaxed life has changed because of their caregiving responsibilities. For some caregivers, the idea of planning the future was too difficult.
Some caregivers emphasized that they did not want to create future plans and they wanted to live one day at a time.
The trouble with dementia is that it could take either a long time or a short time. So, I do not know when the best time is to do it. (Husband, 6) We tend not to think too far in advance. We would like to live each day as it comes. (Wife,8) 4 | DISCUSSION This qualitative study focused on the experiences of caregivers interacting with PwD to enhance our understanding of their positive experiences and challenges. The psychological and behavioural problems of PwD mainly include suspicion, agitation, wandering behaviours and sleeping problems; thus, caregivers must remain alert and apply some strategies to cope with further challenges. In the beginning, caregivers were novice and had limited knowledge, but they acquired the required skills and became familiar with caring tasks over time. This study found that participating in meaningful activities positively affects the well-being of caregivers and PwD. Six main themes emerged (see Table 2). Previous studies have reported that caregivers may actually find pride in providing care for PwD, because they seek to retain their former preferences (Janis & Maggie, 2016). Another previous study have mentioned that caregivers who are confident to take positive coping strategies are likely to handle effectively the symptoms of PwD and reduce the negative effects associated with caring (Papastavrou et al., 2011). Community nurses should assess the interaction between caregivers and PwD to develop comprehensive family management plans.Our study revealed that caregivers played important roles in interactions with PwD. Caregivers exhibit good manners and assist PwD in activities, although these caregivers experience some difficulties and express their intent to develop a relationship with PwD (Miriam, Amanda, Shirley, & Apam, 2016). Constituting a positive approach, meaningful activities and a remarkable relationship have been considered to benefit the PwD and the caregiver.
Helping caregivers realize a special meaning in their interaction experiences is beneficial not only for PwD but also for caregivers themselves (Ablitt, Jones, & Muers, 2009;Van Beek & Gerritsen, 2010 to accept the fate of a given arrangement (Esther, Claudia, Fanny, & Pauline, 2007), and caregiving may be considered a duty that caregivers are obliged to perform (Holroyd, 2005). Many caregivers assume responsibility of taking care of PwD without assistance from other care systems and consequently face remarkable challenges (Sun, 2014

| Limitations
Several limitations should be noted. This study was conducted in Hangzhou. Family members living in this city might have a higher socioeconomic status than those living in less developed areas in China. The findings were based on one interview with each caregiver, but data collection was carried out in one geographical area in China.
As such, this phenomenon may influence the generalizability of our findings. Future research should explore whether these interaction experiences differ from caregivers belonging to families with low socioeconomic status and exhibiting low education. We suggest that prospective quantitative studies should be developed to investigate the influential factors on caregivers interacting with PwD. In addition, we could help the caregiver to better interact with patients through intervention.

| CONCLUSIONS
This study describes the experiences of caregivers in interacting with PwD, such as encountering various unexpected situations and feeling a sense of accomplishment and frustration. A central finding of our study states that caregivers could positively interact with PwD by employing positive coping strategies, creating opportunities and organizing meaningful activities. Such methods are essential for maintaining harmonious family relationships. Therefore, community nurses should use different strategies to improve their ability to interact with PwDs. Further studies can focus on the role of community nurses in improving the ability of caregivers to interact with patients and promoting further family management results.