Panel Study Investigating Status of Cognitively Impaired Elderly in Singapore (PISCES)

Duke University

Status: Unknown

Conditions: Advanced Dementia

Study type: Observational

Funder types: Other

Identifiers

NCT03382223

2017/2989

Details and patient eligibility

About

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.

Enrollment: 400 estimated patients

Sex: All

Ages: 21+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion and exclusion criteria

Inclusion Criteria for primary informal caregivers are:

1. Age ≥ 21 years old
2. Singaporean/Singapore Permanent Resident
3. Intact cognition determined through the Abbreviated Mental Test (AMT) for those who are ≥ 65 years old
4. Patients who score 20 or more on QDRS answered by caregivers will be considered to have severe dementia
5. Main person or one of the main persons providing care to patient (e.g. accompanying patient for doctor's visits, helping patient with day to day activities)
6. Main person or one of the main persons ensuring the provision of care to patient (e.g. supervision of foreign domestic worker so that patient is looked after)
7. Main person or one of the main persons involved in making decisions regarding treatment patient receives

Exclusion Criteria for primary informal caregivers are:

1. Caregivers ≥ 65 years old with cognitive impairment or serious mental illness determined through AMT
2. Foreign domestic workers/maids

Inclusion Criteria for physicians are:

(a) Caregivers of patients they are treating are enrolled in the study