- Top of page
- The study
- Conflict of interest
- Author contributions
- Supporting Information
Dementia, including Alzheimer's disease and related disorders, is a syndrome caused by a degenerative brain disease that affects higher cognitive functions, such as emotional and social behaviour (Ballard & Bannister 2010). It is estimated that in 2010, 35.6 million people worldwide live with dementia and that this number will double every 20 years (Alzheimer's Disease International's 2009). Approximately, two thirds of people with dementia live in low- and middle-income countries (LMIC) (Alzheimer's Disease International's 2009). Furthermore, China, a low and middle-income country, has the largest number of people living with dementia in the world, yet has an undeveloped dementia service system (Ferri et al. 2005, Alzheimer's Disease International's 2009).
People with dementia are increasingly dependent on family caregivers to provide daily care and to maintain their dignity (Sousa et al. 2010, Chien & Lee 2011). Although evidence shows that caregivers in LMIC experience the similar level of burden as those in high-income countries, government-funded dementia services are undeveloped in LMIC (Gavrilova et al. 2009, Pattanayak et al. 2010). Dementia caregiver practice is socially, culturally and politically constructed. However, studies on dementia care predominantly come from high-income countries, which have a different social context than LMIC. Exploring the challenges that caregivers face in LMIC, using China as a case study, provides valuable data for the international healthcare community, which can be used to improve consumer-directed dementia services.
It is widely recognized that caring for people with dementia at home is challenging due to the nature of 24-hour supervision, the difficulties in managing behavioural and psychological symptoms of dementia and the high dependency of people with dementia on caregivers for the performance of activities of daily living (ADLs) (Huang et al. 2012). The care needs of people with dementia can be further compounded by comorbidities and complications. In many LMIC, caring for older people is viewed as the family's responsibility (Chou et al. 1999, Pattanayak et al. 2010, Wang et al. 2012). In fact, in China, caring for older people is assigned to family members by law (The 11th Standing Committee of the National People's Congress 2012). Because countries place importance on family-driven care of older people, government-funded dementia care services are undeveloped.
However, the traditional family role of caring for people with dementia is becoming less prominent due to rapid societal changes, such as the ‘one-child policy’, the rapid growth of internal migration for employment and the improved social status of women in the workforce, who were traditionally the home-based caregivers (Chang et al. 2011, Xiao et al. 2013a). The number of older people living in an ‘Empty Nest’ has increased by more than 9% during the past 10 years, reaching 31.77% of the population in 2010 (CNCA 2012). This suggests an increasingly high demand for dementia care services through the public healthcare system.
Dementia care in high-income countries is mainly provided in primary care settings led by general practitioners (GPs) and community nurses to achieve timely diagnosis, early interventions and caregiver support (Callahan et al. 2006, Brodaty & Cumming 2010, Lee et al. 2010). In China, Community Care Centres currently function as mini acute hospitals with minimal function for disease prevention, chronic disease management and assisted living for older people (Wei et al. 2005, Ministry of Health 2012). In addition, dementia is not included as a chronic disease under the government's pharmaceutical benefit scheme, resulting in greater financial burden on the family (Ministry of Human Resources & Social Security 2009). Paid caregivers are often paid to substitute family caregivers by those who are able to afford the cost (Liu et al. 2009, Prince et al. 2012).
Nurses in countries with established dementia services play a leadership role in coordinating dementia treatment, supervising paid care staff and educating family caregivers about dementia care (Callahan et al. 2006, Chien & Lee 2011). Nurse-led dementia intervention programmes, which include home visits and assessments, psycho-education programmes, telephone support and caregiver support groups, enhance caregiver performance, reduce caregiver burden and reduce the number of hospital admissions for people with dementia (Chien & Lee 2011, Ducharme et al. 2011, Wang et al. 2012). In China, nurses are in an ideal position to lead homecare for people with dementia and support caregivers because they make up the majority of health professionals in Community Care Centres and have more contact and closer relationships with the local residents compared with other health professionals (Wei et al. 2005, Ministry of Health 2012). However, currently, they mainly help doctors to deliver medical treatment and have limited autonomy in leading primary care (Wei et al. 2005, Ministry of Health 2012). Furthermore, there are no services provided by psychiatrists, psychologists, or social workers, or dementia care services provided by the Alzheimer's Association of China (Alzheimer's Disease Chinese 2012). The roles and responsibilities of nurses in dementia care have therefore not been fully established.
Structuration Theory as a framework guiding this study
Although evidence suggests that dementia caregiver practice is shaped by factors that are socially, culturally and politically constructed, studies that examine social structures affecting their practice are sparse. Giddens' Structuration Theory provides one avenue for analysing social structures that shape people's actions and identifying changes that are realistic and practical. Social structure, as used by Giddens, refers to the ‘rules and resources’ associated with the exercise of power over people's actions (Giddens 1984, p. 25). The rules in a society are either formal (such as legislation and policies in dementia care) or informal (such as cultural norms in dementia care). Resources are divided into allocative and authoritative resources, with the former concerned with the material resources (such as infrastructure, equipment and written information for caregivers) used to aid care practice and the latter dealing with human activities (such as caregiver training for dementia care). Social structures and people's actions (or agency) are not separated as ‘a dualism’, but are ‘a duality’; they are inseparable and shape each other (Giddens 1984, p. 25). Structures enable the shaping of people's actions in a specific manner, but may also constrain people's rational actions. Consequently, the outcomes of people's actions include both ‘intended' and ‘unintended’ consequences.
Conversely, this theory also acknowledges that people have the capability, generated from a ‘reflexive form of knowledgeability’ (Giddens 1984, p. 3), to re-develop structures to improve practice. Therefore, this theory allows researchers to identify possible avenues of change for dementia care through collaborative reflection with caregivers. This is a strategic approach in countries with undeveloped policies, services and nurse roles in dementia care. Figure 1 summarizes the ‘duality’ relationship by means of human reflexive circles based on an understanding of the theory and is modified from one of the authors' previous work (Xiao et al. 2013b).
- Top of page
- The study
- Conflict of interest
- Author contributions
- Supporting Information
Of the 23 primary caregivers interviewed for the study, the majority were women, spouses of the people with dementia, aged 60 or above and had chronic health conditions themselves. The average length of time as a caregiver was 5 years. The mean age of the care recipients was 78.8 years and the mean duration of living with dementia was 5 years. Many of the care recipients had several chronic comorbidities. The demographic information of the caregivers and the care recipients are summarized in Tables 1 and 2, respectively.
Table 1. Demographic information of caregivers (n = 23).
|Items||Older Caregivers (>=60 years)||Adult Caregivers (<60 years)|
|Caregivers (%)||16 (69.6)||7 (30.4)|
|Male (%)||5 (31.3)||1 (14.3)|
|Female (%)||11 (68.8)||6 (85.7)|
|Mean Age (range)||71.8 (60–93)||49.3 (45–56)|
|Mean Duration of Caregiving (range)||5.9 (1–16)||3.1 (1.5–7)|
|Mean Number of Chronic Disease (range)||2.3 (0–4)||0.7 (0–2)|
|Relationship with people with dementia|
|Spouse (%)||13 (81.3)||0 (0.0)|
|Son (%)||1 (6.3)||1 (14.3)|
|Daughter (%)||0 (0.0)||1 (14.3)|
|Daughter-in-law (%)||1 (6.3)||5 (71.4)|
|Sibling (%)||1 (6.3)||0 (0.0)|
|Live in the same household||15 (93.8)||5 (71.4)|
Table 2. Demographic information of people with dementia (n = 23).
|Male (%)||11 (47.8)|
|Female (%)||12 (52.2)|
|Mean age (range)||78.8 (59–100)|
|Care recipients with BPSD (%)||14 (60.9)|
|Mean number of chronic diseases (range)||2.3 (0–6)|
|Common BPSD||Aggressive behaviour, wandering, repeated requests or demands, changes in personality, depression|
|Common chronic diseases||Hypertension, stroke, prostatitis, diabetes, cerebral infarction, heart disease, Parkinson's disease|
The four themes in this study identified three unintended consequences of caregiver practice (Themes 1–3; Table 3) and identified potential changes to dementia care (Theme 4). These unintended consequences are the result of inadequate social structures supporting dementia care in the home care environment and are described as follows: untreated behavioural and psychological symptoms of dementia, burden on the primary caregivers and uncoordinated treatment for the people with dementia. Theme 4, described as suggested dementia services, highlights potential structural changes based on collaborative reflection with caregivers. The categories identified in the interpretative hermeneutic and the themes developed in the critical hermeneutic are outlined in Table 3.
Table 3. Categories from interpretive hermeneutic and themes from critical hermeneutic.
|Categories from interpretive hermeneutic||Themes from critical hermeneutic|
C1.1: Worrying about the safety of the person with dementia, the caregivers and the public
C1.2: Feeling ashamed of the dementia behaviours in the public place
|T1: Untreated behavioural and psychological symptoms of dementia|
C2.1: Difficulties experienced by older spouse caregivers
C2.2: Daughters are expected to care for parents in a family
C2.3: Difficulties experienced by adult child caregivers
C2.4: Using paid caregivers in a care crisis
|T2: Burden on the primary caregivers|
C3.1: Not seeking help from the Community Care Centre
C3.2: Non-compliance with medications
|T3: Uncoordinated treatment for the people with dementia|
C4.1: Accessible and affordable dementia services
C4.2: Demands for community aged care services
C4.3: Demands for dementia education programmes for caregivers
|T4: Suggested dementia services|
Untreated behavioural and psychological symptoms of dementia
Behavioural and psychological symptoms of dementia were identified as a major factor contributing to caregiver burden. People with dementia manifested aggressive behaviours that resulted in self-harm and endangered family caregivers and the public. Behavioural and psychological symptoms of dementia were the most common reason for family caregivers to seek help from health professionals. However, family caregivers thought that they got little support or resources to manage severe behavioural and psychological symptoms of dementia at home.
As an example of behavioural and psychological symptoms of dementia endangering the people with dementia, a caregiver stated:
He ate food from the garbage, cursed and hit others. We have no choice but to lock him at home. He urinated and defecated everywhere in the house: on the television, sofa, everywhere…[P18].
Untreated behavioural and psychological symptoms of dementia could also pose harm and risk to the caregivers and the public. Two caregivers described their husbands' behaviour as follows:
He often looks for the lighter and burns things in the house, claiming that there are snakes and wrangling throughout the night [P21].
He threw everything from the window of second floor, everything including waste, tore the window curtains into small pieces…He did not listen to me, but bit me…It is fretful to care for him [P18].
Most caregivers took the people with dementia to see medical doctors, who prescribed antipsychotic medications to treat aggressive behaviour. A caregiver stated:
I have taken him to doctors and psychiatrists for help, but received no useful instructions. They (the doctors) only prescribed sedatives, but I decided not to give him the medication because people have told me that this type of medication could be harmful to his health [P21].
The non-compliance with the treatment regime is evidence that caregiver education on both pharmacological and non-pharmacological management of behavioural and psychological symptoms of dementia is important to ensure that medical treatment is appropriately administered. In this study, nurses were not involved in educating caregivers or in coordinating care in behavioural and psychological symptoms of dementia management in the Community Care Centre.
Burden on the primary caregivers
The majority of the people with dementia lived in ‘Empty Nests’ and mainly relied on their spouses to care for them. A small proportion of family caregivers were adult children and some of them were aged 60 or above. The lack of family caregiver resources was evident and paid caregivers were used in care crises.
Older people had different expectations for their sons vs. their daughters regarding their supportive role in home care, with daughters expected to undertake more care activities than sons. In addition, older people without daughters expected to experience more care burden. As one caregiver stated:
Unfortunately, I have no daughters, only three sons living in the same city. One of my sons has a disability and the other two need to work long hours to keep their jobs. In addition, they have school-aged children to support, so they do not visit us very often [P5].
For families with daughters, the most mentioned types of support were financial support or receiving a sick parent in their homes during a care crisis. One caregiver said:
She received us in her house for a period of time when my husband was in a severe condition after a stroke. She left the house early in the morning and returned in the evening. By the time she returned from work, I had already bathed my husband on my own and helped him to get into bed [P23].
Furthermore, a significant physical burden was associated with caring for people with dementia who were completely dependent on caregivers, especially when the caregiver was also older. One caregiver explained:
He has been bed-ridden since he suffered a hip fracture 2 years ago. I am too old to turn him on my own. He has large bedsores and I try my best to change the dressings for him. I am unable to clean him properly each time he has bowel movements; I have to wait for my daughter to come and help me. She has a job and family and is not available for most of the day [P6].
In cases like this, or in the case of older couples who do not have children to help, maintaining basic hygiene and protecting the dignity of the people with dementia would not be possible without government-funded dementia services. Although employing paid caregivers in a care crisis was mentioned, not all families could afford this option, as pointed out by a caregiver:
I tried to hire a private caregiver to assist me with his daily care, especially when he was hospitalized. However, I was unsuccessful as they [paid caregivers] were unwilling to care for him due to his aggressive behaviour [P22].
There are no government-regulated agencies that fund paid caregivers for families in need. Therefore, caregivers were forced to find suitable paid caregivers themselves and to negotiate payment and working hours, which led to further psychological burden during the care crisis.
Uncoordinated treatment for the people with dementia
Most people with dementia had comorbidities and needed frequent medical treatment and hospitalization. However, there was little coordination between primary and specialist care services to prevent acute episodes or reduce the number and length of hospital visits. Treatment for the people with dementia was further compounded by financial strain. As a caregiver stated:
During that time (when he was hospitalised), he took so many medications that I could not remember the names of all the medications. [After discharge] We couldn't afford all of the medications and decided to reduce to the essential ones to treat only his diabetes [P5].
In this case, the caregiver selected which treatments to continue, meaning that some potentially important medications were not used. This may have contributed to the care recipient's frequent readmission due to repeated falls, hallucinations and cerebrovascular accidents, for which the public healthcare system shared the burden and costs.
Participants described that they rarely visited doctors and nurses at the Community Care Centre as they found it poorly resourced and did not trust the health professionals. One participant stated:
People living in this community have had negative experiences with them [health professionals] and always remark that they are not skilled and are unable to treat patients properly [P5].
Due to this lack of trust in the health professionals at the Community Care Centre, most older people with chronic conditions, including dementia, bypassed the Community Care Centre and sought medical treatment from specialists in major hospitals. This situation contributed to the overload of those major hospitals as described by one caregiver:
It was impossible for me to get a doctor's appointment for my wife at that hospital due to the long waiting list. Even though we had an appointment, the doctor was too busy to give us helpful instructions besides some lab tests and prescriptions [P7].
In this study, only one of the 23 people with dementia was taking medication specifically for dementia. Overcoming the fragmental nature of treating dementia and other comorbidities requires government planning and action to improve primary care and the coordination between primary and specialist care services.
Suggested dementia services
Due to impaired mobility and cognition of the people with dementia and difficulties in getting an appointment with specialists in major hospitals, most caregivers said that they preferred to use local healthcare services. However, they were also concerned about the quality of care and the affordability of services.
Most spouse caregivers and the people with dementia were isolated at home and had limited contact with others. They sought interactions with others for the health and well-being of both the people with dementia and themselves. One caregiver stated:
The Community Care Centre should establish a rehabilitation centre so that we can take people with dementia for rehabilitation activities and psychological counselling [P11].
This was further supported by a statement from another caregiver:
I am hoping nurses can provide regular home visits to assess my husband and give me instructions on care [P8].
Caregivers wanted respite care and community care of older people to be available. One caregiver said:
I wish that nurses would provide regular home visits to assess my husband and give me instruction on how to best care for him [P20].
Another caregiver also stated:
The Community Care Centre should provide homecare as an important part of aged care. Medical treatment for people with dementia should be an important part of homecare [P8].
Family caregivers recognized both their limitations and their learning needs as they mainly used a self-directed learning approach. They believed that the Community Care Centre should offer them further training. One caregiver said:
I am always learning new nursing skills on my own. This enables me to better look after her at home. I wish that nurses from the Community Care Centre would offer training programmes on dementia care [P16].
Most caregivers had few opportunities to socialize with other caregivers and share their experiences of caring for people with dementia. Televised health education programmes were frequently mentioned as the main learning resource:
I learned a lot from TV programmes, which is a good way for older people to learn as we can't see written materials clearly or don't have the ability to read [P3].
Most caregivers in the study learned about dementia care through their own experience and were very eager to learn more, motivated by the challenges they faced. The ways we can meet caregiver expectations are discussed in the following section.
- Top of page
- The study
- Conflict of interest
- Author contributions
- Supporting Information
This study supports previous studies showing that behavioural and psychological symptoms of dementia are a major factor contributing to caregiver burden and reveals a lack of behavioural management that contributes to the situation. The estimated prevalence rate of behavioural and psychological symptoms of dementia in the community setting is 61–88% in high-income countries (Brodaty et al. 2003), where people with severe behavioural and psychological symptoms of dementia are sometimes admitted to residential older people care facilities. The prevalence of behavioural and psychological symptoms of dementia is estimated to be higher in LMIC due to the underdevelopment of older people care facilities. Behavioural and psychological symptoms of dementia are treatable through effective intervention by dementia specialists, GPs and geriatric nurses in collaboration with caregivers (Brodaty et al. 2003, Callahan et al. 2006, Johnson et al. 2012). In high-income countries, Alzheimer's associations also provide ‘Dementia Behavioural Management and Services’, which include home-based assessments and individual counselling sessions delivered by a multidisciplinary team (Brodaty & Donkin 2009, Brodaty & Cumming 2010). The untreated behavioural and psychological symptoms of dementia identified in this study reveal two structural issues in caregiver practice that require policy intervention: the absence of government-funded services for behavioural management (a crucial resource) and the lack of coordination between primary and specialist care services (no rules to govern coordinated care).
This study found that financial burden is a major concern for caregivers, which prevents them from seeking treatment for behavioural and psychological symptoms of dementia. The findings suggest that including dementia in the list of government-funded chronic diseases through policy intervention is one solution, which would meet the rapid growth in the number of people living with dementia. We also identified a lack of resources in the primary care setting, as evidenced by caregivers bypassing the Community Care Centre when seeking medical treatment for people with dementia. Addressing this issue requires government investment in the workforce and equipment in Community Care Centres to meet caregiver demands on locally available dementia care services.
In this study, caregivers showed an evident knowledge gap regarding the causes and triggers of behavioural and psychological symptoms of dementia and held false beliefs on the use of medication to treat aggressive behaviour. The findings agree with previous studies reporting a high level of under-preparation of family caregivers in countries where dementia education programmes are available, but are not easy to access or are not relevant (Brodaty et al. 2003, Ducharme et al. 2011, Gallagher-Thompson et al. 2012). This study further suggests that a lack of knowledge on dementia care leads to undeveloped caregiver education and a low level of health literacy. Poor health literacy is associated with poor health and non-compliance with medical treatment (U.S. Department of Health & Human Services 2009, Lee et al. 2010). In addition, caregivers believe that nurse-led homecare assessment and one-to-one coaching for caregivers is necessary. A body of evidence shows that nurse-led caregiver education is a crucial component of non-pharmacological intervention for behavioural and psychological symptoms of dementia, through which caregivers learn to identify behavioural triggers and to manage them in partnership with health professionals (Johnson et al. 2012, Wolfs et al. 2012). Meeting caregiver expectations on the role of community nurses in dementia care requires that the current nursing workforce be prepared to lead dementia care.
In this study, the desired dementia services were similar to those provided by memory clinics in primary care settings in high-income countries. These clinics are designed to provide early diagnosis, caregiver education, dementia treatment and timely intervention for behavioural and psychological symptoms of dementia and to prevent dementia-associated psychiatric crises (Greening et al. 2009, Lee et al. 2010). Geriatric nurse specialists play a key role in these clinics. This approach to dementia care can be implemented in LMIC, but requires government policies and resources to support advanced nursing training in primary care settings and to improve nurse status in these settings.
The caregiver suggestions regarding community nurse-led homecare identified in this study reflect caregiver interventions led by community nurses in previous studies (Chien & Lee 2011, Waldemar et al. 2011, Van Houtven et al. 2013). The Helping Caregivers to Care programme was specifically designed for family caregivers in LMIC, where dementia services are very limited (Dias et al. 2008, Gavrilova et al. 2009). The home-based approach was used to build caregiver skills with respect to performing ADLs and managing behaviour, providing emotional support and maximizing the use of locally available health and human resources.
In this study, older spouse caregivers were unable to fully perform ADLs for people with dementia, as evidenced by severe complications such as repeated falls, severe decubitus and unmanaged faecal and urinary incontinence. These caregivers were unable to afford paid caregivers to substitute their roles. Failing to intervene in the poor health conditions of people with dementia can maintain or worsen existing health disparities in a society determined by social status (World Health Organization 2008, World Bank 2009). Nurse-led community aged care programmes should be considered in LMIC to relieve burden for those older caregivers, reduce dementia-associated complications and avoid hospitalization.
This study has several limitations. First, only 23 caregivers agreed to participate in an interview among the 45 caregivers invited. One of the barriers contributing to the low response rate might be stigma attached to dementia (Alzheimer's Disease International 2012). Therefore, this study might not capture the whole range of caregiver challenges. Future studies on dementia caregivers should consider strategies to overcome factors affecting the recruitment. Second, the findings cannot be generalized to all family caregivers of people with dementia in rural and remote areas in China or in other countries due to the use of a qualitative approach to data collection and because family caregivers were sampled from one capital city in China. However, the findings may be transferrable to similar social and cultural contexts. Third, the use of the Structuration Theory to interpret structural domination in family caregiver practice restricted the researchers in analysing issues outside this theory. Therefore, the findings of this study represent only one of many critical perspectives on how undeveloped dementia policies and services affect family caregiver practice. The researchers acknowledge that there may be other interpretations of the problem under study, suggesting that further research is needed in this area.