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.
Age range
21 Years
Sex
ALL
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The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Change in quality of life of patient
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in quality of care received by patient
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in caregiver's resilience
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in caregiver burden
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in caregiver's ability to cope
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in caregiver's levels of emotional distress
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in caregiver's awareness of prognostic information
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in caregiver's grief experience
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Change in resource utilisation for patient
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)
Total healthcare expenditure during the last year of life through analysis of medical bills
Timeframe: From recruitment to death of patient (baseline, 4 month, 8 month, 12 month, 16 month, 20 month, 24 month)