Subject(s)
Caregivers , Decision Making , Dementia/therapy , Aged , China/ethnology , Female , Humans , Male , Middle Aged , Qualitative Research , Self Report , SingaporeABSTRACT
Although many persons with severe dementia (PWSDs) are cared for at home by their family caregivers, few studies have assessed end of life (EOL) care experiences of PWSDs. We present the protocol for the PISCES study (Panel study Investigating Status of Cognitively impaired Elderly in Singapore) which aims to describe the clinical course, health care utilization, and expenditures for community-dwelling PWSDs; and perceived burden, coping, resilience, anticipatory and prolonged grief among their caregivers. This ongoing multi-center prospective longitudinal study is recruiting primary informal caregivers of 250 PWSDs from major restructured public hospitals, community hospitals, home care foundations, and hospices in Singapore. Caregivers are surveyed every four months for two years or until the PWSD passes away and then at eight weeks and six months post-death to assess the bereavement of the caregiver. Survey questionnaires included validated tools to assess PWSDs' quality of life, suffering, behaviors, functional status, resource utilization; and caregiver's satisfaction with care, awareness of prognosis, care preferences, resilience, coping, perceived burden, distress, positive aspects of caregiving, anticipatory grief, and bereavement adjustment. We also conduct qualitative in-depth interviews with a sub-sample of caregivers. The survey data is being linked with medical and billing records of PWSDs. The study has been approved by an ethics board. Results from the study will be disseminated through publications and presentations targeting researchers, policy makers and clinicians interested in understanding and improving EOL care for PWSDs and their caregivers.
Subject(s)
Caregivers/psychology , Dementia , Independent Living , Quality of Life/psychology , Research Design , Terminal Care , Adaptation, Psychological , Female , Humans , Male , Psychological Distress , Resilience, PsychologicalABSTRACT
Neuroleptic malignant syndrome (NMS) is a rare, idiosyncratic, but life-threatening adverse reaction associated with the use of antipsychotic drugs. It is characterized by a tetrad of fever, rigidity, autonomic instability, and altered mental status. Failure to diagnose NMS early and institute appropriate treatment can result in serious medical complications and death. While diagnostic criteria for NMS exist, atypical presentations that lack one or more characteristic features pose a diagnostic dilemma to clinicians. The concept of atypical NMS has been proposed for such cases but remains controversial. We report a case of atypical NMS associated with overdose on clozapine and quetiapine and discuss the diagnostic challenges of an atypical presentation. In this case, the diagnosis was delayed due to the absence of rigidity, but later made after serum creatine kinase was found to be markedly elevated. Clinicians should have a high index of suspicion for NMS. Routine checking and trending of serum CK in patients on antipsychotic drugs who present with features of NMS is recommended to facilitate diagnosis. Future research is needed to define and validate threshold scores for existing diagnostic criteria for NMS.
