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

Article type: Research Article

Authors: Malhotra, Chetna^{a; b; *} | Vishwanath, Padmini^a | Yong, Jing Rong^a | Østbye, Truls^b | Seow, Dennis^c | Yap, Phillip^d | Tan, Lay Ling^e | Tham, Weng Yew^f | Vaingankar, Janhavi^g | Foo, Jason^h | Tan, Boon Yeowⁱ | Tong, Kamun^j | Ng, Wai Chong^k | Allen Jr, John Carson^l | Malhotra, Rahul^{b; m} | Tan, Weng Mooiⁿ | Wee, Shiou Liang^{b; o} | Ng, Li Ling^e | Goveas, Richard^p | Mok, Vanessa^e | Sim, Alisson^e | Ng, Wei Fern^e | Wong, Hon Khuan^e | Balasundaram, Bharathi^e | Tan, Rui Qi^e | Ong, Pui Sim^e | Cheong, Chin Yee^d | Yee Chung Pheng, Alethea^q | Tiong, Christina^r | Hum, Allyn^s | Lee, Angel^t | Finkelstein, Eric A.^{a; b}

Affiliations: [a] Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore | [b] Program in Health Services and Systems Research, Duke-NUS Medical School, Singapore | [c] Department of Geriatric Medicine, Singapore General Hospital, Singapore | [d] Geriatric Centre, Khoo Teck Puat Hospital, Singapore | [e] Department of Psychological Medicine, Changi General Hospital, Singapore | [f] Care for the Elderly Foundation, Singapore | [g] Research Division, Institute of Mental Health, Singapore | [h] Alzheimer’s Disease Association, Singapore | [i] St. Luke’s Hospital, Singapore | [j] Post-acute & Continuing Care, Jurong Community Hospital, Singapore | [k] Hua Mei Centre for Successful Ageing, Tsao Foundation, Singapore | [l] Centre of Quantitative Medicine, Duke-NUS Medical School, Singapore | [m] Centre for Ageing Research and Education (CARE), Duke-NUS Medical School, Singapore | [n] Agency for Integrated Care, Singapore | [o] Geriatric Education and Research Institute, Alexandra Health Pte Ltd, Singapore | [p] Department of Geriatric Psychiatry, Institute of Mental Health, Singapore | [q] Assisi Hospice, Singapore | [r] Home Nursing Foundation, Singapore | [s] Dover Park Hospice, Singapore | [t] St. Andrew’s Community Hospital, Singapore

Correspondence: [*] Correspondence to: Chetna Malhotra, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore. E-mail: [email protected].

Abstract: Although many persons with severe dementia (PWSDs) are cared for at home by their family caregivers, few studies have assessed end of life (EOL) care experiences of PWSDs. We present the protocol for the PISCES study (Panel study Investigating Status of Cognitively impaired Elderly in Singapore) which aims to describe the clinical course, health care utilization, and expenditures for community-dwelling PWSDs; and perceived burden, coping, resilience, anticipatory and prolonged grief among their caregivers. This ongoing multi-center prospective longitudinal study is recruiting primary informal caregivers of 250 PWSDs from major restructured public hospitals, community hospitals, home care foundations, and hospices in Singapore. Caregivers are surveyed every four months for two years or until the PWSD passes away and then at eight weeks and six months post-death to assess the bereavement of the caregiver. Survey questionnaires included validated tools to assess PWSDs’ quality of life, suffering, behaviors, functional status, resource utilization; and caregiver’s satisfaction with care, awareness of prognosis, care preferences, resilience, coping, perceived burden, distress, positive aspects of caregiving, anticipatory grief, and bereavement adjustment. We also conduct qualitative in-depth interviews with a sub-sample of caregivers. The survey data is being linked with medical and billing records of PWSDs. The study has been approved by an ethics board. Results from the study will be disseminated through publications and presentations targeting researchers, policy makers and clinicians interested in understanding and improving EOL care for PWSDs and their caregivers.

Keywords: Dementia, end of life, health care utilization, palliative care, Singapore

Keywords: http://www.clinicaltrials.gov (NCT03382223)

DOI: 10.3233/JAD-190897

Journal: Journal of Alzheimer's Disease, vol. 75, no. 2, pp. 403-416, 2020