Advanced Dementia Clinical Trial
Official title:
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.
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