Understanding the Empowerment of Family Caregivers of People with Dementia in China: A Qualitative Descriptive Study

doi:10.21203/rs.3.rs-4676634/v1

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Research Article

Understanding the Empowerment of Family Caregivers of People with Dementia in China: A Qualitative Descriptive Study

https://doi.org/10.21203/rs.3.rs-4676634/v1

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Background

The World Health Organization highlighted that promoting the empowerment of caregivers of people with dementia is one of the priorities of dementia research. The empowerment of family caregivers for people with dementia in China has not been adequately explored. Moreover, the experience of other countries may not apply to China directly because of cultural factors.

Methods

This qualitative descriptive study was conducted among 27 purposively sampled people with dementia and their caregivers in a metropolitan city in China between October 2023 and January 2024. Semi-structured interviews were employed to understand the current status and needs of empowerment of family caregivers of people with dementia in China from different perspectives.

Results

Three categories of empowerment of family caregivers for people with dementia were identified: (a) attitudes towards dementia care (respectful, patient, and responsible), (b) knowledge and skills (understanding dementia, support in daily activities, managing challenging behavior, and related cognitive training), (c) support systems (family support, professional support, long-term care support, and community support).

Conclusion

In China, people with dementia preferred to be taken care of by their family members. The key to empowering family caregivers for people with dementia in China is to strengthen the construction of dementia-friendly communities to provide professional and timely services to family caregivers to improve their caregiving knowledge and skills and maintain positive caregiving attitudes.

Dementia

Family caregivers

Empowerment

China

Qualitative study

Dementia is a syndrome that can be caused by a number of diseases that destroy nerve cells and damage the brain over time, typically leading to deterioration of cognitive function [1]. The number of people with dementia was estimated to be 152.8 million by 2050 [2]. Moreover, more than 11 million family members and other unpaid caregivers provided an estimated 18 billion hours of care to people with dementia in 2022 [3]. China has the largest population of people with dementia worldwide. Around 15.07 million people aged 60 years or older in China are estimated to have dementia [4], accounting for 25% of the dementia population worldwide [5]. Given the influence of the value of filial piety, family-based home care remains the main choice for Chinese elderly people with dementia [6, 7]. Informal caregivers suffer from great caregiver burden [8]. Family caregivers of people with dementia are often called the invisible second people with dementia [9] because of the negative effects of being a family caregiver, such as heavy caregiving burden, psychological morbidity, social isolation, and poor physical health [9–11].

Empowerment refers to one’s ability to appraise, influence, and manage a situation by using contextual and personal resources to achieve desired outcomes [12]. Empowerment of family caregivers improved their health literacy and self-efficacy [13] and their ability to enact flexible care approaches [14]. Empowerment in caregivers of people with dementia could have a positive influence on care partner stress levels and communication [15], and improve the quality of life of people with dementia and their families [16–18]. In 2022, the World Health Organization published the first blueprint for dementia research, highlighting that promoting the empowerment of caregivers of people with dementia is one of the priorities of dementia research [19].

The importance of empowerment of caregivers of people with dementia has been emphasized, and several interventions have been developed to empower caregivers. The importance of knowledge, skills, and psychological empowerment was emphasized for empowering family caregivers for people with dementia in Estonia [20]. In America, an empowerment intervention program was designed to improve the engagement and efficacy for caregivers of older adults with dementia [21]. In England, researchers have conducted empowered communication courses for caregivers of people living with dementia to improve communication and relationships with people with dementia [15]. Support systems, including family, professionals, long-term care institution, and community, are critical for caregiver empowerment, especially community empowerment, which has been mentioned in several studies [20, 22–24].

The empowerment of family caregivers for people with dementia in China have not been adequately explored. Hsieh explored the care needs of older adults with dementia through interviews but lacked comprehensive perspectives from other caregivers and professionals [25]. Formal caregivers can provide advice on dementia care to caregivers from the professional perspective, so their views are essential. A study showed that empowerment needed to consider the sociocultural, psychological, and historical contexts of the target population [22]. Therefore, the experience of other countries may not apply directly to China. There is a need to explore what knowledge and the needs of empowerment of family caregivers of people with dementia in China.

Therefore, this study aimed to explore the status quo and further needs of empowerment of family caregivers for dementia care in China. Several stakeholders’ perspectives, including family caregivers, people with dementia, and formal caregivers, were explored to gain a whole picture. This study is part of a larger study that aims to develop a tool to assess the empowerment and an intervention to empower family caregivers of people with dementia in China.

Design

A descriptive qualitative approach with semi-structured interviews was employed to understand the current status and needs for empowerment of family caregivers of people with dementia in China. This study was based on the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) [26].

Participants

Family caregivers, formal caregivers (nurses and care assistants), and people with dementia were purposively recruited from memory clinics, communities, and long-term care institutions. The inclusion criteria were as follows: family caregivers who were mainly responsible for taking care of people with dementia at home and who were at least 18 years old; formal caregivers who had provided care services for people with dementia for at least 1 year; and people who were diagnosed with dementia. All participants should be fluent in spoken Chinese and have agreed to participate in the study.

Data collection

Semi-structured interviews were used to collect data between October 2023 and January 2024. The interviews were carried out by JW who was a postgraduate nursing student, had received training in qualitative research methodologies, and possessed experience in conducting interviews. An interview guide with open-ended questions was developed by the research team on the basis of literature and study objectives (Table 1). The first version was amended after two pilot interviews. The focus was to explore the status of empowerment of family caregivers and the needs for people with dementia and their caregivers in dementia care. There were no personal connections between the interviewers and the interviewees. Informed consent was obtained from all participants, and the purpose of this study was interpreted before interviewing. Then, one-to-one, face-to-face semi-structured interviews were conducted in a comfortable and safe environment on the basis of the interviewees’ preferences. During the interviews, no one other than the participants and the researcher were present at the location where the data were collected. The interviews were audio recorded and transcribed verbatim by JW, XW, and XY, and records were not returned to the participants. The study had no withdrawals nor repetitions of any interviews. Recruitment was ended when data saturation was reached, meaning that no new elements arose. The findings did not reveal any new information of the 25 participants. Two participants were continued to be interviewed, and still, no new elements occurred.

Table 1

Interview guide
Participant	Interview guide
Family caregivers	1. How do you feel about caring for a family member with dementia? 2. Have you experienced any difficulties in caring for your family member with dementia?
Family caregivers	3. How did you deal with the problems in dementia care? 4. What knowledge and skills do you think are necessary to care for a family member with dementia? 5. Have you received any help in caring for your family member with dementia? 6. What kind of care support would you want?
Formal caregivers	1. Can you talk about your own feelings or experiences in caring for people with dementia? 2. How did you deal with the problems in dementia care? 3. What knowledge and skills do you think are necessary to care for a family member with dementia? 4. What support do you think family caregivers should receive?
People with dementia	1. What kind of care service would you have received? 2. What kind of care service would you want? 3. How do you feel about the care your received from your family caregiver? 4. Whose support have you received in dementia care? 5. What kind of support would you still want?

Data analysis

Thematic analysis was used to analyze the data. It was conducted by following the stepped process [27]: familiarizing yourself with your data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. First, the data were transcribed by XW and XY. The transcriptions were reviewed and compared with the recordings several times to ensure accuracy. Then, data familiarization and initial code generation were independently conducted by JW and YZ to begin the data analysis. As many codes about the empowerment of family caregivers as possible were written down to identify interesting aspects, such as knowledge and skills in dementia care, in the data that may form themes. Meaning units, that is, phrases that answer the aim, were selected and condensed. Thereafter, the condensed meaning units were interpreted and given descriptive codes, which could be a short sentence or a few words, still with a low level of abstraction and interpretation. The codes were then compared in terms of content and levels of abstraction and discussed. Next, the codes were read thoroughly and compared with the data, generating initial themes. The initial themes of the data and codes were repeatedly examined to ensure consistency. The resulting sub-themes and themes were then iteratively examined and refined by the research team until they were finalized and named. Memo writing was used to note ideas or questions that came to mind during the interviews and reading transcripts. Nvivo (version 12.0) was used to manage the data during the analysis. Finally, the confirmation of the final themes required the unanimous agreement of all the researchers.

Rigor

This study employed various measures to enhance the credibility, transferability, dependability, and confirmability of the research [28]. For credibility, all the researchers had received training in qualitative research methodologies during their university education and possessed experience in conducting interviews. For transferability, the background, aim, and methods of this study were explained in detail, and direct quotes from participants were used to illustrate the findings. For dependability, the interviews were transcribed and analyzed independently. For confirmability, the data were reviewed and refined continuously by regular group meetings. COREQ was used to ensure quality and transparency during the research process and reporting [26].

Ethical considerations

This study was conducted strictly in accordance with the principles of the Declaration of Helsinki. It was approved by the Ethical Review Board of Jiangsu Provincial Hospital of Traditional Chinese Medicine (No.: 2023NL-KS219). Participants were informed of the study purpose and procedures, and they provided informed consent after they understood the research objectives and procedures. For people with dementia, informed consent was obtained from their guardians prior to the interviews. Informed consents and permission for recording were obtained from all participant before the interviews. All audio files were securely stored on password-protected computers.

Participant characteristics

Twenty-seven participants were interviewed (Table 2). None of the participants refused to participate in the study. Among the 27 participants, four were nurses, five were care assistants, 10 were family caregivers, and eight were people with dementia. Of the 19 formal and family caregivers, five were male and 14 were female. The mean age of the caregivers was 50.4 years (range: 32–84 years). Of the eight people with dementia, three were male and five were female. The mean age of people with dementia was 81.6 years (range = 68–91 years). The interviews varied in length between 20 and 54 minutes (mean: 31minutes) each.

Table 2

Participant characteristics (n = 27)
Participant	Identifier	Gender	Age	Years of nursing work/caregiving/having dementia
Nurse	N1	Female	37	13
Nurse	N2	Female	30	8
Nurse	N3	Female	38	16
Nurse	N4	Female	40	22
Care assistant	C1	Female	53	7
Care assistant	C2	Female	50	15
Care assistant	C3	Male	55	7
Care assistant	C4	Female	45	1
Care assistant	C5	Female	43	2
Family caregiver (son)	F1	Male	37	1
Family caregiver (couple)	F2	Female	77	2
Family caregiver (daughter)	F3	Female	32	1
Family caregiver (daughter)	F4	Female	38	0.5
Family caregiver (son)	F5	Male	59	1
Family caregiver (couple)	F6	Female	84	5
Family caregiver (couple)	F7	Male	81	0.5
Family caregiver (son)	F8	Male	45	2
Family caregiver (couple)	F9	Female	73	1
Family caregiver (daughter)	F10	Female	40	2
People with dementia	P1	Male	90	3
People with dementia	P2	Female	84	2
People with dementia	P3	Female	91	1
People with dementia	P4	Female	75	2
People with dementia	P5	Female	90	1
People with dementia	P6	Male	70	1
People with dementia	P7	Female	68	0.5
People with dementia	P8	Male	85	1

Qualitative results

The overarching theme that emerged from the data was “empowerment of family caregiver for people with dementia.” Three categories regarding empowerment of family caregiver for people with dementia and the subcategories are presented in Table 3.

Table 3

Overview of results of categories and subcategories
Theme	Categories	Subcategories
Empowerment of family caregiver for people with dementia	Attitudes towards dementia care	Respectful
		Patient
		Responsible
	Knowledge and skills	Understanding dementia
		Support in daily activities
		Managing challenging behavior
		Cognitive training
	Support systems	Family support
		Professional support
		Long-term care support
		Community support

Category 1: Attitudes towards dementia care

The caregivers’ attitudes towards dementia care impacted their behavior, with positive attitudes leading to enhanced understanding of individuals with dementia, improved quality of care, and decreased negative emotions among caregivers. This finding is exemplified by patient family caregivers who exhibit patience and understanding towards individuals with dementia experiencing memory loss, thereby reducing frustration and irritation.

(1) Respectful

Demonstrating respect for the thoughts and desires of individuals with dementia is imperative for caregivers (e.g., they do not want their condition to be discussed in public, and do not want to interact with complete strangers in an unfamiliar environment). Even with a diagnosis of dementia, they should be treated with respect like a normal human being, including respecting what they like and dislike.

I observed that after my father heard my sister discussing his disease with other family members openly. He just stayed in his bedroom a lot and talk to us less, because he felt that people were treating him like a patient. So, I talked to my family about paying attention to his moods and treat him as possible as like a normal people. [F5, A son]

We recently moved to a new community and I tried to get her to go and square dance with people in the community on her own because I need to go to work. But she said she didn't want to go since she didn't know anyone. She still didn't want to go even after I've told her several times. [F5, A son]

(2) Patient

Patience was an important attribute in caring people with dementia. If a family caregiver was often impatient with the dementia family due to the illness, people with dementia were prone to think that they were worthless and a burden to the family. Impatience also reflected the lack of knowledge and skills in caring for family member with dementia.

When she forgot what I just said, I would tell her over and over again without getting bored. [F2, A wife]

There was an old man who often felt like urinating, but he did not always actually pee. And every time he often called his daughter helping him and said, "I want to pee, I want to pee," her daughter became impatient later in several times and yelled, "Don't call me, don't call me anymore, go to sleep now." The old man felt upset and stopped talking to his daughter, and peed on the bed finally. [N2, A formal caregiver]

(3) Responsible

The sense of responsibility was an important source of strength to support family caregivers caring for family with dementia. The law might require family caregivers to support the basic life of their family members with dementia. However, responsibility drove family caregiver to understand dementia, learn how to care for people with dementia, and help conduct cognitive exercises.

Sometimes I would say, my life was your (people with dementia) life, and as long as I lived you would surely live. But once I was gone, you were in danger, because they didn't understand you. [F2, A wife]

When people with dementia are in the hospital, they rely on professionals. However, when they return home, the family members must take up the responsibility of caring for their families, to take the initiative and regularly train the people with dementia cognitive functions. And should not leave the disease progressing without doing anything. [N3, A formal caregiver]

Category 2: Knowledge and skills

Caring for a people with dementia was different from caring for people with other diseases. As the disease progresses, the cognitive function gradually declined. Mastering the knowledge and skills of dementia care fostered family caregivers to understand the unusual behavior of family members with dementia and choose appropriate means of caring for their family members in accordance with a specific situation.

(1) Understanding dementia

Having knowledge on dementia, such as rick factors, symptoms, and treatment, was fundamental to caring for a family member with dementia. Mastering such knowledge played a vital role in understanding the changes in people with dementia and what things needed and did not need to do for them at each stage of the disease. For example, if a family member occurred symptoms related to dementia, family caregivers could go to the hospital for treatment and start cognitive training at an early stage.

I knew the dementia can cause poor memory, slow reaction, decrease ability to organize language. When my father showed these symptoms, I knew it was time to take him to the hospital. [F4, A daughter]

Before my mom was diagnosed, we wouldn't let her do anything in case she felt tired, we wouldn't let her clean the house and cook. Now I think we should try to let her do as much as she can if she can, it would slow down the progression of the disease. [F3, A daughter]

(2) Support in daily activities

Aging and dementia resulted in a decrease in self-care ability for people with dementia. The condition did not mean that they were completely unable to take care of themselves. Family caregivers needed to know the physical and cognitive functional status of people with dementia, what they can and cannot in the context of ensuring the safety of people with dementia.

When people with dementia experienced physical decline, they wanted someone to assist them do something that they were no longer very good at. However, people with dementia should be allowed or ordered to complete the daily activities that they are able to do with the accompaniment of family caregivers to ensure safety. In addition, family caregivers thought home was a familiar and safe environment for people with dementia, and when they were out, family caregivers considered that they needed company to ensure safety.

In daily care, family caregivers mainly act as a type of spectator to prevent the occurrence of accident for the elderly, such as choking, getting lost and falling down, etc. Let them do the activities as long as they can, such as eating, even if they eat slowly, do not feed them. [N3, A formal caregiver]

My father is more familiar with the home environment and can take care of himself basically. However, if he wants to go out by transportation or going to the market to buy food, these need my mom to accompany him. Because his memory and sense of direction have deteriorated. [F4, A daughter]

(4) Managing challenging behavior

Challenging behavior commonly occurred among people with dementia at any time and place. People with dementia might run everywhere, yell, and even hit caregivers. Family caregivers needed to be equipped with skills, such as interrupting, white lie, and whole-day escorting, to deal with the situation while ensuring their own safety and that of older adults with dementia.

If he was left alone, he'll run outside on his own or onto the balcony, and if I'm not there, he'll scream and yell, only I come to comfort him will he calm down. So, I had to be with him almost all the time. [F2, A wife]

Sometimes, people with dementia had challenging behavior suddenly, she (a person with dementia) won’t listen to you, even hit you, scratched you. When she was in a cranky mood you should try to calm her down. After calming her down you could nurse her again to check if she was stable. If she was, nursing that was interrupted could be continue. [C5, A formal caregiver]

(4) Cognitive training

Cognitive training for people with dementia needed to be tailored to target different aspects of cognitive level. Cognitive training activities should be simple and easy to follow, and the materials are best taken anywhere. Family caregivers sometimes use everyday activities, such as cooking, to train cognition in dementia, believing that observing daily activities provides an obvious indication of change.

We develop training programs based on the features of dementia, for example, when they have reduced numeracy, we play board games with them that require them to do calculations, or when they have reduced disorientation, we hang up calendars in their rooms, ask them to tear out a sheet by hand every day, and ask them every day what day number it is. [N3, A formal caregiver]

I usually let her cook to train her cognitive function, because the steps are sequential, and I feel like if she has poor cognitive function. She'll get confused about what to put in when, and I'll be watching to see if she forgets any steps. [F1, A son]

Category 3: Support systems

The support from other family caregivers or external supports, including professionals, long-term care institutions, and the community, played a vital role in the caregiving process. Support from additional family members helped alleviate the time and energy constraints faced by the primary family caregivers. External support focused on the provision of professional therapeutic care guidance and respite services.

(1) Family support

Other family caregivers should assume the responsibility of supporting primary family caregivers who have taken on the primary caregiving role. Providing care for individuals with dementia was challenging without assistance from other family members. People with dementia were mainly from the older age group. Therefore, when the primary caregiver was the spouse, the caregiver cares for two elderly people simultaneously. However, spouses were no longer energetic enough to take on the burden of caregiving activities, and they usually needed the support of their children who had the energy but lack time to care for their parents because of work. So, they preferred to have other family members to help them take care of their parents.

We couldn’t be separated with other family caregivers. At one time, I planned to live with my husband (with the dementia) until we could not take care of ourselves. And then join them (the children) when we're really old, not now. Now, the expectation was shattered., we need their help. [F2, A wife]

To be honest, it actually was my responsibility to conduct her (cognitive) training. But I was very busy, I got up at 5 o'clock, when I come home, after making dinner, doing the housework, at least 9 o'clock. I really tired and wanted to go to bed. So, there's really a bit of a problem in that time. [F9, A daughter]

(2) Professional support

Caregivers usually trust professionals the most, as they believed professionals can give them correct advices and helped them access the right information. They also believed that people with dementia trust professionals like them. Thus, they hoped that doctors could help them raise the awareness of people with dementia regarding the disease. Family caregivers and people with dementia could work together on dementia care. However, the support from professionals was often limited by length of time, and it could not sustainably empower family caregivers.

Because she didn't even take her condition seriously before, she thinks she was okay and did not need take the medication. So, I hope the doctor makes the situation sound more serious, so that she might take her condition more seriously. And she followed the doctor's advice more, as opposed to her family members. [F3, A daughter]

Cognitive training and health education for people with dementia were done by nurses when they hospitalized. But the time in hospital was limited, nurses just could try their best to train family caregivers to facilitate the continuity of care for people with dementia, which can slow down the progression of the disease. [N3, A formal caregiver]

(3) Long-term care support

Long-term care institutions could provide temporary nursing help if other family caregivers are occupied or they lack time and energy. In particular, long-term care institutions were elderly-centered, providing tailed services, such as mini-marts, dining halls, and institutional hospitals, for the elderly. Tailored life assistance could basically meet the living needs of people with dementia and reduce the stress of family caregivers.

If my daughter had not gone to the United States to look after my grandson for a while, she could take care of him with me. When my husband defecated in bed, we immediately go to clean him, change his clothes. However, my daughter left, and I'm also 84 years old with high blood pressure and atrial fibrillation, I couldn't carry him by myself. So, I stayed here (a nursing home) and hired someone to take him for a bath. [F6, A wife]

Family caregivers who are lack of the time, energy, and training to care for people with dementia send their seniors to our institution, since the family caregivers trust our attitude and professionalism. Family members don't have the energy to pay attention to every aspect of the elderly with dementia at home because they have to work and take care of other seniors and children, but it may be better in our institution because we are senior-centered here. [N4, A formal caregiver]

In this institution, a mini-mart where we can buy daily necessities, a dining hall where we can eat elderly-friendly meals cooked by specialized staff. Moreover, institutional hospitals can solve the basic need for health care. Therefore, we don't need to bother our children to buy things for us often. [P2, A person with dementia]

(4) Community support

The community was recognized by caregivers as an important part of dementia care, but the construction of communities still needed further improvement. The current community facilities and staff did not meet the needs of people with dementia and their family caregivers. Specific activities for people with dementia and their families to provide professional and continuous empowerment and support in dementia care were lacking due to the lack of professionals who could organize activities. Moreover, communities were afraid of accidents involving people with dementia.

But if the family conditions were not good and no one had sufficient time to accompany them. It was actually better to seek help from the community or the elderly institutions in the community. [N1, A formal caregiver]

We're new to this neighborhood and we don't have any familiar people in this neighborhood, and the environment is also unfamiliar. There are not any activities to participate in to integrate into the community and conduct cognitive training, so I have to drive my mother to join in activities elsewhere when I'm off work. [F1, A son]

There was no one to organize activities in the community, managers were afraid of accidents happening to the elderly and then they should be responsible for the accident. [P4, A person with dementia]

This qualitative study aimed to describe and understand the empowerment of family caregivers for people with dementia in China through semi-structured, in-depth interviews with family caregivers, formal caregivers, and people with dementia. The results revealed three themes about the empowerment of family caregivers: attitudes towards dementia care (respectful, patient, responsible), knowledge and skills (understanding dementia, support in daily activities, managing challenging behavior, and related cognitive training), and support systems (family support, professionals support, long-term care institution support, and community support).

The quality of care depends on the caregivers’ attitude towards dementia [29]. In the present study, the specific attitudes towards dementia care were emphasized. The findings showed that people with dementia needed to be treated with respect, consistent with the results of another study [30]. Before being diagnosed with dementia, they are individuals with the right to be respected. Besides, some studies showed that respecting people with dementia helped promote their self-identify, dignity, and wellbeing [31, 32]. In long-term care, patience was identified as one of the facilitators in dementia care for promoting the reconstruction of intimacy [33, 34]. In the present study, patience was perceived as a key element to avoid arguments between people with dementia and their caregivers. Other studies suggested that as the disease progresses, caregivers should communicate with older adults with more patience [35]. Even though they could not express what they want and become difficult to handle, but that did not mean they do not know [36]. Family caregivers should initiate taking the responsibility for their family members with dementia, and the responsibility should not be based on pressure from social environment [37]. A previous study suggested that the care from the heart could create a good mood for family caregivers, so the stress from dementia care could diminish [38]. Attitudes towards dementia care influence caregivers’ care behavior. Therefore, the attitudes of respect, patience, and responsibility should be emphasized during the process of dementia care to empower family caregivers.

Mastering the knowledge and skills for dementia care helps family caregivers know why people with dementia behave and what they should do in different conditions. For example, family caregivers need to know that the memory loss is due to the disease rather than aging. Understanding the ability of people with dementia and taking advantage of their remaining functions are recommended [39, 40]. Some caregivers considered that family caregivers should always be aware of the surroundings of people with dementia due to the possibility of falls or other accidents [41]. Other studies believed that family caregivers could use some advanced technologies, such as GPS and monitoring cameras, to ensure the safety of people with dementia [42, 43]. Caregivers thought that when behavioral and psychological symptoms of dementia (BPSD) occurred, conforming is better than confronting. Leung [44] mentioned that confronting people with dementia could induce further arguments, agitation, and distress among caregivers. Another study suggested that the prerequisite for alleviating BPSD is correct identification and assessment through paying attention to predisposing factors, manifestations, and intensity of the symptoms [39]. Some tips to prevent or decrease the occurrence of BPSD included fulfilling unmet physical needs, modifying care environment, and using distraction [44]. Cognitive training is an essential part of dementia care. Family caregivers often want to be able to conduct cognitive training for dementia at home by some easily available and maneuverable activities such as card games. For example, Mahjong is a widely popular intellectual game among Chinese people [45]. Studies indicated that Mahjong can help buffer against the decline in cognitive function and maintain cognitive function levels [45, 46]. Not everyone is good at taking care of others inherently, but the deficiency of nursing ability could be improved through systematic, targeted training and maintaining the level by regular assessment and training [47]. Empowering them should helping them develop the habit of paying attention to subtle behavioral or emotional changes in people with dementia, maintaining emotional stability when faced with repetitive behavior of people with dementia, and taking responsibility for dementia care initiatively.

Family caregivers are empowered internally by family members and externally by professionals, communities, and long-term care institutions. Encouragement and support from other family members could help alleviate the care burden of primary family caregivers [39]. The more the family caregivers are involved in dementia care, the more they feel empowered [22]. In addition, the support from professionals, long-term care institutions, and communities is critical. For professionals, family caregivers would like to obtain professional and systematic guidance to manage dementia care in hospitals [48], which they considered the most trustworthy organization to give them advice. In China, some hospitals’ memory clinics provide nursing education for families and training for caregivers [5]. The help from long-term care institutions could provide respite when family caregivers could not deal with the care issues [44, 49]. Community support reduces personal strain and enhances the positive attitudes of family caregivers of people with dementia [50]. Moreover, empowering family caregivers by the community is the key point for sustainable empowerment, because communities could provide sustainable trainings and periodic visits for family caregivers [22]. However, the present study found minimal support received from communities and lack of activities, facilities, and professionals in China, supporting previous literature findings [48, 51]. Therefore, community care infrastructure should be established and the supply of healthcare workers to support home-based dementia care should be increased.

As stated above, attitude, knowledge and skills, and support system are critical to empowering family caregivers for people with dementia. This result is similar to that of a study by Farran and colleagues [52], who considered that knowledge about dementia and positive attitudes towards dementia care are essential to skill development, and family caregivers should know how to manage resources for dementia care. In addition, Farran [52] mentioned that caregivers should possess insightfulness, honesty, creativity, flexibility, and sense of humor. However, these qualities were not mentioned by the interviewees in the present study, may be because the caregivers were not yet aware of the process of dementia care.

Limitation

Several limitations should be acknowledged in this study. First, the selected formal caregivers were nurses and care assistants, thus lacking other support groups’ viewpoints, such as doctors and social workers. However, in China, nurses and care assistants provide the most care for people with dementia. They have the most contact with family caregivers. Therefore, we think nurses and care assistants, could express their opinions regarding the empowerment of family caregivers of people with dementia on behalf of formal caregivers. Second, the participants of this study were based in Jiangsu Province in China, an economically advanced province with developed elderly services. Therefore, the participants are a representative of its population, but they possibly limited wider transferability of the findings. Finally, given the communication problems, only elderly people with short duration of dementia were included, so sample representativeness may be limited.

This study explored the status quo and further needs of empowerment of family caregivers for people with dementia in China. Three categories were identified: attitudes of dementia, knowledge and skills, and support systems. Positive caregiving attitudes, good knowledge and skills, sufficient support from families, professionalism, long-term care institutions, and community promoted the empowerment of family caregivers in dementia care. A good understanding of dementia and appropriate caregiving skills could enhance the sense of empowerment among family caregivers. Correspondingly, these knowledge and skills could influence family caregivers’ attitudes towards caregiving. Family caregivers wish to gain support from family members, the community, and other institutions, especially the community. Therefore, the key to empowering family caregivers of people with dementia in China is to strengthen the construction of long-term care facilities and dementia-friendly communities to provide professional and timely services to family caregivers and strategies, such as education and training, to improve their caregiving knowledge and skills and maintain positive caregiving attitudes.

BPSD

Behavioral and Psychological Symptoms of Dementia (BPSD)

Ethics approval and consent to participate

The study was approved by the Ethical Review Board of Jiangsu Provincial Hospital of Traditional Chinese Medicine (No.: 2023NL-KS219). All procedures were performed in accordance with the relevant guidelines and regulations of this Ethical Review Committee. Study participation was voluntary. Informed consent was obtained from each participant.

Consent for publication

Not applicable.

Availability of data and materials

The datasets used and analysed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare no competing interests.

Funding

This work was supported by The Postgraduate Research & Practice Innovation Program of Jiangsu Province (Grant No. SJCX24_0848), The National Natural Science Foundation of China (Grant No. 72304153), The Natural Science Foundation of the Jiangsu Higher Education Institution of China (Grant No. 22KJB320019) and The Social Science Research in Colleges and Universities in Jiangsu Province (Grant No. 2023SJYB0318). This research received no specific grant from any funding agency in the commercial or not-for-profit sectors. None of the participating institutions influenced the results or the development of this research

Authors’ contributions

JW designed the research, collected, analysed and interpreted the data, drafted the manuscript , XW and XY collected and analysed data , GX and YB designed the research and analysed data, YZ designed the research and analysed data

Acknowledgements

We would like to thank all interviewees who participated in our study.

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No competing interests reported.

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You are reading this latest preprint version

Understanding the Empowerment of Family Caregivers of People with Dementia in China: A Qualitative Descriptive Study

Status:

Version 1

Abstract

Background

Methods

Results

Conclusion

Introduction

Methods

Design

Participants

Data collection

Data analysis

Rigor

Ethical considerations

Results

Participant characteristics

Qualitative results

Category 1: Attitudes towards dementia care

(1) Respectful

(2) Patient

(3) Responsible

Category 2: Knowledge and skills

(1) Understanding dementia

(2) Support in daily activities

(4) Managing challenging behavior

(4) Cognitive training

Category 3: Support systems

(1) Family support

(2) Professional support

(3) Long-term care support

(4) Community support

Discussion

Limitation

Conclusion

Abbreviations

Declarations

References

Additional Declarations

Status:

Version 1