PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore


Principal Investigator:

Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore


Study Team:

Dennis Seow, Tan Lay Ling, Philip Yap, Janhavi Vaingankar, Tong Kamun, Tan Boon Yeow, Tham Weng Yew, Ng Wai Chong, Jason Foo, Eric Finkelstein, John Allen, Truls Ostbye, Rahul Malhotra, Ng Li Ling, Vanessa Mok, Alisson Sim, Ng Wei Fern, Wong Hon Khuan, Bharathi Balasundaram, Tan Rui Qi, Ong Pui Sim, Wee Shiou Liang, Richard Goveas, Tan Weng Mooi, Luo Danlin


Background:

Dementia affects 10% of the elderly population in Singapore. However, to date there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), their EOL direct and indirect costs and caregiver burden. This study is a first-of-its-kind prospective Cohort Study in Singapore to assess comprehensively the care received by PDSD, the annual and EOL direct and indirect costs for PDSD as well as any influencing factors.


Objectives:

The study aims to assess comprehensively the care received by PDSD, the annual and end-of-life direct and indirect costs for PDSD as well as any influencing factors. We also aim to develop a comprehensive risk score to accurately predict 6-month mortality in community-dwelling PDSD.


Design:

This is a prospective study of primary informal caregivers taking care of patients with advanced dementia. 312 primary informal caregivers are followed every 4 months for 2 years, or until the patient passes away, and then post-death 8 weeks and 6 months to assess bereavement of the caregiver. Additionally, we conduct qualitative in-depth interviews with at least 10% of the recruited sample of the caregivers. Treating physicians are also invited to take part in the study.


Study sites:

Singapore General Hospital

Changi General Hospital

Khoo Teck Puat Hospital

Institute of Mental Health

Jurong Community Hospital

St Luke’s Hospital

Care for the Elderly Foundation

Tsao Foundation

Alzheimer’s Disease Association


Implications:

The results of this study will help to improve early decision making by caregivers regarding end-of-life care and physician referrals for palliative care services; and a better understanding of end-of-life care for PDSD and their caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. 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.


Publication/s:

A Prospective Longitudinal Study of Caregivers of Community dwelling Persons with Severe Dementia (PISCES): Study Protocol

Malhotra C, Vishwanath P, Yong JR, Truls O, Seow D, Yap P, Tan LL, Tham WY, Vaingankar J, Foo J, Tan BY, Tong KM, Ng WC, Allen JC, Malhotra R, Tan WM, Wee SL, Ng LL, Goveas R, Mok V, Sim A, Ng WF, Wong HK, Balasundaram B, Tan RQ, Ong PS, Cheong CY, Yee A, Tiong C, Hum A, Lee A & Finkelstein EA. Journal of Alzheimer’s Disease.2020; 75(2):403-416.


Caregiver Preference for Tube Feeding in Community-dwelling Persons with Severe Dementia

Zain Z, Mohamad H, Seow D, Hum AYM, Allen JC, Tong KM, Malhotra R, Balasundaram B, Malhotra C. Journal of the American Geriatrics Society.2020; 10.1111/jgs.16641


Family caregiver perspectives on suffering of persons with severe dementia: A qualitative study

Malhotra C, Hazirah M, Tan LL, Malhotra R, Yap P, Balasundaram B, Tong KM, Pollak KI, PISCES Study Group. Journal of Pain and Symptom Management.2020. Published Online First. doi: 10.1016/j.jpainsymman.2020.11.021


Discordance between dementia caregivers' goal of care and preference for life-extending treatments

Malhotra, C., Mohamad, H., Østbye, T., Pollak, K. I., Balasundaram, B., Malhotra, R., Tong, K. M., Hum, A., Allen, J. C., Seow, D., Yong, J. R., Yoon, S., & PISCES Study Group (2021). Age and ageing, afab049. Advance online publication. https://doi.org/10.1093/ageing/afab049


Project Start Date:

12 October 2017


Contact Person:

Kat: ekaterina.utkina@duke-nus.edu.sg