Clinical Research Directory

A Culturally Adapted Decision Aid Intervention to Support Chinese American Dementia Caregivers in Feeding-Related Decisions

Family caregivers of people with dementia have to decide between tube feeding and hand feeding when persistent eating problems arise. This decision can be difficult for Chinese American dementia caregivers, due to the interplay of culture, potential absence of a patient's advance directive, poor understanding of dementia, and lack of knowledge on the risks and benefits of tube feeding. In this polit study, the principal investigator examines whether a culturally adapted decision aid intervention regarding feeding options named "Chinese version of Making Choices Feeding Options for Patients with Dementia Decision Aid" (CMCFODA) will improve Chinese American caregivers' decision-making about feeding options in patients with moderate or advanced dementia. The proposed study advances the field by providing critical evidence to inform the development and implementation of culturally adapted decision support interventions in end-of-life dementia care.

Panel Study Investigating Status of Cognitively Impaired Elderly in Singapore

Dementia affects 10% of the elderly population in Singapore. However, there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), PDSD's EOL direct and indirect costs and caregiver burden. This study, a first of-its-kind prospective cohort study in Singapore will assess the EOL care received by PDSD and PDSD's caregivers, EOL medical and social care costs of severe dementia and caregiver burden; and will develop a risk score to predict 6-month mortality for PDSD. The investigators will accomplish this by surveying caregivers of PDSD every 4 months till the patient passes away and 6 weeks and 6 months after patient's death during caregiver bereavement. The investigators will also extract and match patient medical and billing data with survey data for comprehensive assessment of care costs. Key outcomes achieved by this study will be improved understanding of PDSD's EOL care, EOL care costs, and caregiver burden and bereavement. The systematic data collected will also lead to predicting 6 month mortality for community dwelling PDSD with greater accuracy compared to existing tools. Positive implications from this study will be improved early decision making by caregivers regarding EOL care and physician referrals for palliative care services; and a better understanding of EOL care for PDSD and PDSD's caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. In this way this proposal is highly responsive to the grant call which focuses on early decision making and cross sector palliative care delivery among non-cancer patients. In the long term, this study will improve clinical and public health policy and has the potential to be the foundation for future initiatives for dementia care and improved social and medical infrastructure planning.