Nowadays, day care, or nursing home is one of centers of providing stimulation to participants with dementia and scheduling relief to caregivers. However, day care did little to resolve continuing care issues that resume upon the individual returning home while it provided tremendous relief during the hours of service. So, family caregivers still provide extraordinary, uncompensated care, predominantly in the home setting (Lavretsky et al., 2010). Unfortunately, caregivers are often placed at great risk for negative outcomes that also compromise the well-being of the patients with dementia and heighten their risk for placement in institutional settings. As a result, caregiver needs are overlooked in most clinical and service settings, which may exacerbate the issue of care of people with dementia.
Challenges of family caregivers
1. Biological perspectives
Caregivers of people with dementia must manage their loved-ones’ activities of daily living, such as dressing, toileting, and eating. Physically, caregivers are faced with demands involving assistance with daily activities and increased daytime dysfunction compared to non-caregiving controls (McKibbin et al., 2005). Besides, sleep disturbances have deleterious effects on family caregivers’ health, which is also documented as being predictive of heightened risks, including cardiovascular disease (Rose et al., 2008). At the same time, fatigue may contribute to the depletion of caregiver’s decision to institutionalize their demented spouse (Vitaliano et al., 2003).
2. Psychological perspectives
The stress of caregiving in dementia has been highlighted in numerous studies, often described as an on-going stress process (Schulz & Martire, 2004). At the beginning, loved one has been diagnosed with dementia, leaving many with a sense of dread, uncertainty, fear, and shame (Gorina et al., 2006). Moreover, in one study, caregivers expressed their concerns about a lack of knowledge on the cause of illness, on the treatments available for their relative, and on the types of services available and how to access those services (Wong et al., 2003). In addition, they feel frustration when having difficulty managing drug compliance and medical follow-ups, positive symptoms, such as bizarre behaviors, excessive and uncontrollable emotions, and negative symptoms of their relatives with mental illness, such as “idling at home” and “lying in bed all the time” (Wong, 2000). Later, grief might occur in response to loss of personal freedom, worry about the future, changes in roles and role conflict, and disruptions in functioning (Holly & Mast, 2009). Compared with Western culture, the sense of familial responsibility among Chinese caregivers in Hong Kong exacerbates the stress of caregiving in dementia (Wong, 2000).
Social costs are being borne by caregivers with relatives suffering from chronic mental illness (Lowder et al., 2005). Many studies have found that family members, particularly the caregivers, experience an increase in family conflicts, limited friendship and social life, financial difficulty, change in daily routines (Wong et al., 2002; Schulz & Martire, 2004; Wong, 2006).Moreover, Hong Kong caregivers scored significantly higher in “social costs” than the Australian caregivers (Wong et al., 2002).
Considering the challenges of family caregivers above, the purpose of this article is to explore the potentiality of supporting to caregivers of people with dementia in Hong Kong, in consideration of the well-being of the patients, especially of themselves.
Current situation in Hong Kong
Services provided in Hong Kong
In Hong Kong the service provided for caregivers of dementia people is holistic. Social Welfare Department has hotline services as well as family services centers to offer counseling, support, and referral services to carers. And the carers support cernter in it and in Caritas Hong Kong also provide support services for those who need to take care of the elderly at home. Scope of service in such kind of centers are mianly skill-training and educational programs, self-help and mutual support groups, resouce corner, couseling and referral services, information giving, demonstration of rehabilitation-aid equipment and social recreational activities (GovHK, 2006).
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Although there are holistic intervention programs for the caregiver of dementia person in Hong Kong, we find that those programs maily focus on how to better care for the dementia people. After analyzing the challenges faced by family caregivers above, it is necessary to put emphasis on the carers as well. Secondly, prevention programs or services for carers of people with dementia which is diagnosed at the first stage are mentioned little. However, the prevention is important for carers as they may know the difficulties early and have the psychological preparation for all the possible challenges in order to provide better service for patients or supportive strength for themselves. Thirdly, the majority of intervention programs aim at primary caregivers. Nevertheless, according to the systemic family perspective (Yan, 2003), family is ecological. Although the primary caregiver is responsible for the daily care of the dementia elder, all family members will experience stresses. In order to establish a new equilibrium of family dynamics, roles and relationships, power and boundary restructuring are needed to be adjusted to the changing situation. Therefore, family as a system to be considered when an intervention plan is adopted is necessary and helpful to maintain a harmony and consolidate environment.
2. Policies supported
Prior to World War 2, no community-based psychiatric service was available for people with mental illness in Hong Kong. These individuals were put into asylums run by charitable organizations, such as Tung Wah services (Yip, 1998). During 1960s and 1970s, very few community-based facilities, such as half-way houses and sheltered workshops for mentally ill persons were established (Wong, 2006). In 1982, the incident that an acutely psychotic person went into kindergarten, injured, and even killed a number of children created a scare in the community. As a consequence, the Hong Kong government took more responsibility in financing social and vocational rehabilitation services. In the early 1990s, psychiatric inpatient and community rehabilitation services have undergone many changes (Wong, 2006).
However, there are several limitation of the mental health care system and policies. First of all is lack of direction and coordination of service. Whereas various political, social, and cultural conditions may have shaped the development and setting of different priorities in different countries, the Hong Kong SAR government still has not established an overall mental health policy to guide the development of mental health services in Hong Kong, even though various mental health acts have been legally endorsed in such countries as the United States, and Canada. Secondly, delivery of mental health services is inadequate. In Hong Kong, the dominant service delivery mode is still largely office-based, with a nine-to-five working schedule. Very few services operated on the weekends and after office hours. Therefore, when caregivers need professional help, their relative with chronic mental illness who is passive to treatment may not be able to receive timely interventions. Thirdly, there is a lack of community rehabilitation services. Currently, four government subsidized resource centers are available, but three of these four centers have been funded by the Social Welfare Department of Hong Kong only since October 2003. Moreover, lack of use of informal care is also a limitation. In Hong Kong, only several government-subsidized relative resource centers exist along with a few self-help groups with small memberships. The mental health care system has not fully utilized the resources available from these informal and networks (Wong, 2006). Finally, resources are lack for caregivers of people with dementia. At present, most of the resources in mental health care have been put into services for people with serious mental illness, such as schizophrenia, and very few resources have been devoted to establishing services for caregivers of people with mental illness, especially with dementia, within the misunderstanding of dementia as a normal phenomenon among the elderly. Moreover, some social workers may not have the clinical knowledge and skills in mental health to perform psychiatric assessment and counseling for caregivers and their relative with illness.
Strategies on how to do prevention and intervention
When to intervene?
According to Rabins (1994), prevention can be categorized into three types: primary prevention, in which a disorder is prevented from occurring; secondary prevention, in which an intervention is provided early when the disorder is identified; and tertiary prevention, in which morbidity occurs, but long-term consequences of disorder are diminished after appropriate intervention (Rabins, 1994).
A primary-prevention strategy would aim at families at risk and most current caregiver-intervention studies are secondary- prevention studies. They focus on individuals who have sought help from an organization. Identifying individuals who are at great risk of developing impairment due to social, financial, physical, intrapersonal, or interpersonal resources limit early in the course of caregiving could improve the use of existing services and prevent them from exacerbating more serious problems. Tertiary prevention, that is to minimize the morbidity of individuals who have clearly developed undesirable outcomes because of caregiving (Rabins, 1994).
Based on the three phases, different interventions are used. Prevention programs can be applied to the family members with elderly people who might become possible patients or the caregivers of dementia people who have been diagnosed at an early stage. Public education programs about dementias can be useful to those families with elderly people. Also, people need to be encouraged to communicate with dementia patients or their caregivers to understand the possible challenges they may meet which also can be a way to support the existent caregivers. Besides, psycho-education group is another good way to help caregivers which offers support, knowledge and skills training. For the intervention plans, they are mostly applied to the carers who have already faced the difficulties and felt challenged for themselves as well as the patients during the caring. They may encounter the problems from biological and psychological perspectives. Moreover, they face the challenges of lacking family support as well as social support which make them feel suffering. As a result, the following part will introduce the intervention plan for carers of dementia elderly.
Different aspects to intervene
a. Biological aspect
It can be counterproductive for family members to continue caring for their relatives when they are under bad healthy situation, so it is necessary for family caregivers to recharge their energy by taking a break from caring for their relatives. They should be encouraged and helped to establish more fulfilling and interesting social lives or they can choose a relaxer such as aerobics, massage, watching movies with friends (Stehman, Strachan, Glenner, Glenner, & Neubauer, 1996). Moreover, some skills such as Body scan (Stehman, et al., 1996) can calm the caregiver down when he or she feels stressful or has tight tension. Regular body examination is necessary for the carers as well.
b. Psychological aspects
According to psychological problems of caregivers, the most serious points are distress, low self-efficacy which can lead to depression and anger during the caring process (Gallagher-Thompson, 1994). When counseling with the carers, listening is valuable to them as they always need someone to listen to their feelings and experience which is a way of release (Marshall & Tibbs, 2006). Moreover, using psycho-educational intervention programs can be helpful in which two programs were developed. One is ‘Increasing Life Satisfaction’, the one that focused on handling depression by increasing the frequency of engagement in pleasant activities, and the other one is ‘Coping with Frustration’ which aims at anger-management skills and reducing the frequency as well as intensity of anger feelings (Gallagher-Thompson, 1994). Both of the two programs are developed from cognitive-behavioral perspective. And the duration can be last 10 sessions at three-month intervals between every three sessions.
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Secondly, other caregiver training programs which provide support to enhance positive emotion are always needed. The training shares two major goals: to improve caregivers’ ability to cope with the stress of caregiving and to empower caregivers by developing problem-solving strategies (Kaplan, 1996). The ability of solving problems when caring often relates to the cognitive status and will influence the stress level. Another pivotal aim is to increase the self-efficacy of carers. Since self-efficacy of caregivers relates to their physical and mental health and high level of depression may lead to low self-efficacy and more burden to caregivers, it is particularly significant to enhance the self-efficacy of caregivers (Fortinsky, Kulldorff, Kleppinger, & Kenyon-Pesce, 2009).
In a word, efficient intervention to help caregivers improve their problem-solving skills and thus enhance self-efficacy and reduce the stress as well as negative emotion such as guilty or anger is important when considering the psychological aspect.
c. Family support
As mentioned before, balanced family dynamics and support from other members are benefit to both the patient and the caregiver. Intervention programs that attempt to help the family members develop proper attitudes toward their relatives, acquire basic information on the day-to-day management of their relatives, improve communication skills are found to be useful. Indeed, it is necessary for the worker to see family members as partners and resources in the care of people with dementia disease.
Family therapy (Marshall & Tibbs, 2006) is traditionally practised in dysfunctional families and usually it is useful when families are under stress. Viewing dementia as a family problem rather than a problem for a single person, or the person and the carer, can be very constructive. In the family system, normally there are some subsytems such as siblings relationship, parent-child relationship, and marital relationship. And when one of the members have demetia problem, conflict or argument arises under the stressful environment. Under this circumstances, better communication and intimate relationship help to cope with the crisis (Quinn & Herndon, 1986). The family had a clear but flexible boundary, which allowed other systems come in to provide assistance. The family members were also flexible in adjusting different roles and positioning in the family to achieve stability. So having family counseling, and involve all the possible members to discuss and share with each other is important. Under the agreement, the members can support each other and the burden or emotional problem can be eased.
d. Social support
Caregiver support groups throughout the community to help people better cope with complex issues is necessary like the groups provided by Alzheimer’s Community Care (“Caregiver Support Groups,” 2010). Besides, it concludes one special service called 24-hour crisis line to provide crisis intervention. Such kind of intervention is quite useful because it will stabilize and coordinate emergency resources and advocate for the patient and caregiver. Moreover, it ensures the patient to achieve the optimum level of functioning, enabling the patient to remain in the least restrictive setting.
Educational support group is an intervention used by the majority of the programs. The objectives are to help caregivers develop knowledge about dementia and the process of caring for someone with the disease; to assist caregivers to learn about the resources and services available to them and to support them in their experience of caregiving and in their need for self-care. Small groups of less than fifteen people can be offered to deepen and personalize the knowledge gained through the seminars. Caregivers feel more at ease to raise their concerns and questions. Moreover, workers can have the time to address concerns and issues selected from them. Enhanced Home and community services (EHCCS) program provided by Social Welfare Department of Hong Kong and Carer support Group organized by Hong Kong Alzheimer`s Disease Association offer such kind of platform for carers. Caregivers can get professional resources and emotional support from the sharing of experienced carers. Besides, respite care (Lawton, 1994) allows caregiver to be temporarily relieved of the responsibility for care. It qualifes as a broad generalized intervention because it supplies the wherewithal of time for the caregiver to do whatever he or she wishes-a ture open-ended intervention. Moreover, case management services provided by community help caregivers to negotiate the social services or health care system. Through this way, multiple professionals can be gethered to support and meet the needs of caregivers and patients.
At last, social workers also can help through home visiting and offering couseling. During the helping process, communication skills and techniques such as nomalization, attending and miracle questions are needed to encourage caregivers to share and express their negative emotions and thus to assess the caregivers’ problem and help. When doing the couseling, music and art therapy can be an opportunity for carers to enjoy and improve the quality of life.
3. Suggestion for policies
First of all, the provision of psychiatric care involves such different departments as health care, social services, education, and vocational training, and involves different professionals such as psychiatrists, occupational therapists, psychologists, and social workers. Different operation units have their own sets of criteria and procedures for accepting service user. It is easy to appreciate the difficulties and confusion family members face when accessing the mental health care system. Therefore, a systemic, comprehensive health care policy should be established, which provide the family caregivers with information on the various services available and secure the services for his or her relative.
Secondly, since a large number of mentally ill individuals live with their family, and some these family members have taken up the caring roles, the government has the responsibility to provide resources and funding to support these family members. In essence, if family members can adequately perform their caring roles, it may reduce the chance of their relative’s relapse and consequently fewer hospitalizations will occur.
Finally, in order to increase the family’s functioning of caring the dementia people in Hong Kong, the government needs to administer more resources to agencies that provide individual and group counseling for caregivers of people suffering from serious and mild psychiatric illness.
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