Transformation in response to dementia diagnosis begins when an individual is initially informed of their illness, the caregivers were able to gradually understand and accept their family members’ diagnoses. This finding was similar to the core category of “shared processes in the family,” which was identified by Pesonen et al. . A diagnosis represents a mutual turning point for the family. Although the meaning of dementia differs between a patient and their family members, they must reach a consensus to cope with the disease together.
The caregivers were generally aware of the changes in their family members’ behaviors, which prompted them to seek treatment for the affected family member and attempt to identify the causes of the disease. Prior to the diagnosis, the caregivers continuously checked and validated the condition of their family member with suspected dementia because the patients were often unaware of their dementia symptoms . The affected family member getting lost was one event that prompted caregivers to recognize the disease severity and choose to seek professional assistance . The study by Mastwyk et al. also revealed that patients with dementia and their family members often sought medical treatment due to memory problems . Therefore, identifying symptoms and seeking professional assistance are regarded as shared processes among the family . A majority of the caregivers were well aware of the diagnostic disclosure, and they expressed the desire for a doctor to conduct a memory test and a brain scan to assess the problems and validate the symptoms . Even though they were well aware of the signs and symptoms of dementia, the caregivers often described feeling shocked and bewildered upon being informed of the diagnosis. This finding was similar to the findings reported by Derksen et al. . Some caregivers also described being shocked by the diagnosis because they did not suspect anything was amiss, which is associated with a lack of understanding regarding the presentation of dementia . Once the caregivers understood the long-term disease course and irreversible nature of dementia, they would prepare themselves to cope with the disease as long as possible. This mindset is associated with the finding that most patients with dementia are cared for by their family members and depend upon them to assist and support their activities of daily living . The disease itself is regarded as both a personal experience for the patient and an issue that the whole family must cope with because a family’s equilibrium is disrupted when a family member is diagnosed with dementia . Despite some caregivers being aware of the high likelihood that their family member would be diagnosed with dementia even before seeking treatment, they continued to hope that they were wrong. The diagnosis of dementia confirmed the previous suspicions of the caregivers, demolishing their hope and forcing them to prepare themselves for the long-term challenges ahead.
The stigmatization of dementia was one reason that caregivers were concerned that the patients might not accept their diagnosis, and disclosure could cause distress. Therefore, caregivers often do not wish for their affected family members to be informed of their diagnosis. This finding is in accordance with those reported by van den Dungen et al. and Mitchell et al., who found that caregivers sometimes chose not to disclose their family members’ diagnosis to them to prevent unease or anxiety and because they regarded the disclosure as being pointless[19, 20]. In the present study, some caregivers attempted a tactful approach to convey information regarding dementia to the patients without persuading them to understand the disease completely. The caregivers who chose this approach appeared to be influenced by the stigmatization of dementia, describing the situation as a “cognitive impairment” to avoid impulsive reactions from their family members .
The family caregivers attempted to help the patients comprehend their current condition and prognosis in the hope that understanding would enable the patients to cooperate in their follow-up care plans. This finding supports the findings reported by Mastwyk et al., in which caregivers expressed the desire that their family members understood their condition so that treatment plans could be devised and offered to them, and the patients could learn coping strategies . The strategies adopted by the caregivers to delay deterioration in their family members’ conditions include routine medication administration, scheduling activities, and preventing patients from wandering around and getting lost. These strategies support the findings of van der Roest et al., who reported that caregivers took their own initiative to find information about the disease and sought solutions . Coping strategies included managing their everyday activities; keeping a list of important items; using cues and clues; writing reminders in a diary, notebook, or calendar; promoting their health; engaging in memory training sessions; and maintaining their activity levels [22, 23, 24, 25, 26].
The caregivers were better able to identify with the patients’ feelings of resignation and their struggles with the disease when they had a better understanding of the disease. Caregivers often chose to accept the patients’ fate and attempted to change their own mindsets to help their family members live well with dementia. Throughout the period of adjusting to their roles, the caregivers developed a better understanding of the functional capacities of their family members and the value of their relationship . Mutual attempts were made to find ways to acquiesce or accustom themselves to the symptoms . This approach reflects the values and beliefs of Asian people. The Chinese people, who believe that everything that happens to their corporeal form is a matter of fate and view acceptance as the best way to live with things that cannot be changed. Therefore, the family members were compelled to accept the dementia diagnosis and take on the caregiver role . The caregivers changed how they interacted with the patients, complied with the patients’ needs, and strengthened their relationships during the process. A diagnostic disclosure not only prompts caregivers and patients to rethink and adjust their interactions to identify effective coping measures but also allows them to recognize the value of their relationship . However, caregivers also felt the burden of their responsibilities, which they wished they could share with others. During this process, they accepted both that their family member was diagnosed with dementia and that their family member’s illness was part of their lives. After experiencing the patient’s functioning impairment and cognitive decline, the caregiver and the patient recognized the patients’ humiliation, loss of control, and the need to rearrange their roles and responsibilities .
This study employed a retrospective interview technique, which can be limited by the participants’ inability to completely recall past experiences. Therefore, the authenticity of the retrospective data remains incomplete. To overcome this problem, a longitudinal study can be conducted in the future, in which data is collected at multiple time points after diagnosis. Such an approach would reveal additional details regarding the participants’ actual life experiences and reveal the changes that occur in response to the use of various coping strategies. In addition, the primary diagnoses of patients cared for by the participants in this study were Alzheimer's disease and vascular dementia, and they were typically older individuals (mean age: 85.6 years, standard deviation; 5.40 years). Therefore, these results may not be generalizable to patients with other forms of dementia. Subsequent studies can target younger populations or those with early-onset dementia and compare differences in their experiences with dementia diagnosis disclosure.