Globally, a new case of dementia occurs every 3 seconds. In 2017, approximately 50 million individuals worldwide had dementia; this number is projected to nearly double every 20 years, reaching 75 million by 2030 and 131.5 million by 2050 (Alzheimer’s Disease International, 2019). Dementia predominantly affects older people. With population aging worldwide, including in Taiwan, the number of people with dementia (PWD) is expected to increase rapidly. In Taiwan, approximately 1 in every 13 people aged ≥ 65 years and 1 in every 5 people aged 85 years or older are diagnosed as having dementia (Taiwan Alzheimer’s Disease Association, 2022). Dementia is characterized by the dysfunction or loss of memory, orientation, attention, language, judgment, and reasoning. As the disease progresses, PWD become increasingly dependent on their caregivers. The rapid increases in the numbers of PWD and their family caregivers (FCGs) present various challenges. In Taiwan, approximately 6% of PWD are in care facilities, whereas 93% of them live at home (Shi et al., 2017). Of them, 55% receive care from family members (Ministry of Health and Welfare News, 2022); this percentage is similar to that reported in Western countries (Alzheimer’s Association, 2018). During the course of dementia, most patients exhibit some behavioral or psychological symptoms of dementia (BPSDs).
Informal caregivers, typically spouses and adult children, offer care outside a paid or professional capacity. PWD often require assistance from others in performing daily activities. These needs evolve because of the progressive nature of the disease. Many family caregivers, who often have no previous experience, may completely lack the necessary knowledge and skills for dementia care. In the United Kingdom, national guidelines advocate for education and skill training for caregivers. The National Institute for Health and Care Excellence guidelines state that psychoeducation and skill training must be provided to all informal caregivers to support them in their care activities [National Institute for Clinical Excellence (NICE), 2018]. In Taiwan, long-term service regulations stipulate that family caregivers be equipped with knowledge and skills related to long-term care. However, limited guidance is available regarding the implementation of this approach and the essential elements that constitute effective FCG support and outcomes.
Behaviors of Psychological Symptoms of Dementia
Caring for PWD can be challenging because it causes distress among both care recipients and caregivers, particularly FCGs. Approximately 90% of all PWD experience BPSDs, including agitation, aggression, repeated calling for assistance, sleep disturbance, wandering, and apathy; these symptoms are associated with poor outcomes, such as distress, in both PWD and caregivers (Feast et al., 2016). According to the “Dementia Diagnosis and Treatment Manual (in Chinese)”(TDS & TSGP, 2017) common symptoms of BPSD include: emotional symptoms (e.g., depression, indifference, euphoria and anxiety), psychotic symptoms (e.g., delusion, hallucination and misidentification), and behavioral symptoms (e.g., agitation/aggression, repetition, wandering, getting lost, sleep change, appetitive/eating change, hoarding behavior and sundown syndrome) that are similar to psychiatric disorder. Some studies have characterized BPSD symptoms based on the types of dementia etiology. For example, delusions appear to be most common in Alzheimer’s dementia, depression and apathy in vascular dementia, and disinhibition and eating disturbances in frontotemporal dementia (Kales, Gitlin & Lyketsos, 2015).
Coping Theory
Effective coping strategies may reduce the burden on FCGs and improve the quality of life of both patients and caregivers (Huang et al., 2015). Coping is defined as the successful adaptation to a stressful or conflict-ridden situation through various cognitive, emotional, and behavioral processes and strategies (Billings & Moos, 1984). According to Lazarus and Folkman (1984) coping strategies are divided into two main types: problem-focused coping and emotion-focused coping. Problem-focused coping involves actions such as seeking resources or information, while emotion-focused coping involves seeking emotional supports or reframing the way one thinks about the stressor to manage emotional distress. Lazarus and Folkman (1984) proposed that coping strategies involve adjusting to stressful situations through cognitive and behavioral strategies when a person’s capacity or available resources do not meet external demands. In this study, the participants may or may not use a combination of coping strategies depending on the challenges they encounter and their personal characteristics. The transactional model of coping by Lazarus and Folkman suggests that individuals adapt to stressors by continuously appraising and reappraising the situation. The model emphasizes the importance of cognitive appraisal, coping strategy and the feedback loop between coping efforts and the perceived effectiveness of those efforts in managing stress (Lazarus and Folkman, 1991).
Cognitive appraisal may also involve subjective assessment how an individual perceives and interpret a stressor, which can influence their emotional and behavioral responses to it. In other words, cognitive appraisal varies depending on an individual’s past experiences, beliefs, values and the context in which the stressor occurs. According to the transactional model of coping, individuals access both the stressor (the primary appraisal) and the available resources (the secondary appraisal), resulting in more effective coping responses (Litvak Hirsch & Lazar, 2020).
Educational Training
An essential component of dementia care training in this study involves developing knowledge of the disease, fostering appropriate attitudes, and acquiring practical caregiving skills to effectively manage challenges, stressful and uncertain situations when caring for PWD. Caregivers should be provided with information, training, and support that will help them cope with professional, legal, and financial problems; in addition, caregivers should learn and develop effective communication skills (Silva et al., 2013). Training can aid caregivers in managing their stress and anxiety and improving their quality of life as well as that of care recipients. Support helps reduce burnout and stress, thereby maintaining the physical and mental health of caregivers (Ablitt et al., 2009). Several systematic reviews have demonstrated the positive effects of psychoeducational and nonpharmaceutical interventions on FCGs’ sense of burden, well-being, mood, and quality of life (Cheng & Zhang, 2020; Frias et al., 2020). However, few studies have explored the positive effects of educational programs designed for FCGs on the BPSDs of PWD. Limited guidance is available for FCGs regarding the optimal strategies for managing the BPSDs and problem behaviors of PWD and the provision of positive behavioral support in home-based care settings. Further research on informal caregiving is necessary to establish guidelines for effectively engaging, educating, and supporting FCGs.
In this study, it is argued that BPSDs should not be viewed merely as isolated problems; instead, they should be holistically addressed considering the various core characteristics of PWD (e.g., characteristics, past life history, living habits and other personal circumstances). To help FCGs alleviate their care burden while encountering the challenging behaviors of PWD, an intervention called Program for Coping with Behavioral and Psychological Symptoms of Dementia (PCBPSD) was developed. Through this intervention, FCGs were guided and encouraged to develop their own coping strategies. This study investigated positive changes experienced by FCGs after participating in the PCBPSD. In addition, the association between FCGs’ self-adaptation and self-adjustment resulting from participation in the PCBPSD was explored. The research questions were as follows:
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What are the most frequently self-reported challenging behavioural of PWD faced by FCGs in a home setting?
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How do FCGs effectively cope with the challenging behaviors of PWD in a home setting?
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What positive changes have FCGs observed after participating in the PCBPSD?