Living with Uncertainty: Presence of Anticipatory Grief among Filipino Family Caregivers of Major Neurocognitive Disorder Patients

Caring for a loved one with a Major Neurocognitive Disorder can be compared to a long train journey with no fixed route and no estimated time of arrival. This condition, formerly known as "dementia," is a progressive and incurable neurological disorder that impairs a person's cognitive and physical abilities. As a result, patients who had been diagnosed were left with caregivers who had the duty of caring for them. Prior studies have shown that family caregivers of patients with major neurocognitive disorders experience anticipatory grief, a stage of pre-death mourning brought on by manifestations of the disorder's impact on the patient. In the Philippines, Major Neurocognitive Disorder is not recognized as a significant public health concern that calls for an investment in medical research, causing the caregiver community to suffer and be labeled as the second invisible patient due to a lack of approved local guidelines (Agapito et al., 2018). It limits the possibility of conducting local studies on caregivers' experiences of anticipatory grief. This provided sufficient justification for the researchers to conduct a qualitative phenomenological study focusing on the family caregivers of patients with major neurocognitive disorders to determine the essence of a phenomenon of "uncertainty" through their lived experiences. Following Collaizi's methodological approach, the researchers created a self-made open-ended interview questionnaire. A total of ten selected respondents were interviewed using maximum variation sampling. The findings indicate that anticipatory grief is commonly experienced by family caregivers who have a patient with a severe major neurocognitive disorder, as it includes the disorder's worst symptoms, such as memory and functionality deterioration. The respondents reported anticipatory grief as a result of "uncertainty" caused by a lack of knowledge, resources, and support, resulting in self-doubts and a sense of helplessness. Indeed, there is uncertainty in anticipatory grief as a result of inadequate country policies for home-based family caregivers.