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

被引：14

作者：

Malhotra, Chetna ^{[1
,2
]}

Vishwanath, Padmini ^{[1
]}

Yong, Jing Rong ^{[1
]}

Ostbye, Truls ^{[2
]}

Seow, Dennis ^{[3
]}

Yap, Phillip ^{[4
]}

Tan, Lay Ling ^{[5
]}

Tham, Weng Yew ^{[6
]}

Vaingankar, Janhavi ^{[7
]}

Foo, Jason ^{[8
]}

Tan, Boon Yeow ^{[9
]}

Tong, Kamun ^{[10
]}

Ng, Wai Chong ^{[11
]}

Allen, John Carson, Jr. ^{[12
]}

Malhotra, Rahul ^{[2
,13
]}

Tan, Weng Mooi ^{[14
]}

Wee, Shiou Liang ^{[2
,15
]}

Ng, Li Ling ^{[5
]}

Goveas, Richard ^{[16
]}

Mok, Vanessa ^{[5
]}

Sim, Alisson ^{[5
]}

Ng, Wei Fern ^{[5
]}

Wong, Hon Khuan ^{[5
]}

Balasundaram, Bharathi ^{[5
]}

Tan, Rui Qi ^{[5
]}

Ong, Pui Sim ^{[5
]}

Cheong, Chin Yee ^{[4
]}

Pheng, Alethea Yee Chung ^{[17
]}

Tiong, Christina ^{[18
]}

Hum, Allyn ^{[19
]}

Lee, Angel ^{[20
]}

Finkelstein, Eric A. ^{[1
,2
]}

机构：

[1] Duke NUS Med Sch, Lien Ctr Palliat Care, Singapore, Singapore

[2] Duke NUS Med Sch, Program Hlth Serv & Syst Res, Singapore, Singapore

[3] Singapore Gen Hosp, Dept Geriatr Med, Singapore, Singapore

[4] Khoo Teck Puat Hosp, Geriatr Ctr, Singapore, Singapore

[5] Changi Gen Hosp, Dept Psychol Med, Singapore, Singapore

[6] Care Elderly Fdn, Singapore, Singapore

[7] Inst Mental Hlth, Res Div, Singapore, Singapore

[8] Alzheimers Dis Assoc, Singapore, Singapore

[9] St Lukes Hosp, Singapore, Singapore

[10] Jurong Community Hosp, Postacute & Continuing Care, Singapore, Singapore

[11] Tsao Fdn, Hua Mei Ctr Successful Ageing, Singapore, Singapore

[12] Duke NUS Med Sch, Ctr Quantitat Med, Singapore, Singapore

[13] Duke NUS Med Sch, Ctr Ageing Res & Educ CARE, Singapore, Singapore

[14] Agcy Integrated Care, Singapore, Singapore

[15] Alexandra Hlth Pte Ltd, Geriatr Educ & Res Inst, Singapore, Singapore

[16] Inst Mental Hlth, Dept Geriatr Psychiat, Singapore, Singapore

[17] Assisi Hosp, Singapore, Singapore

[18] Home Nursing Fdn, Singapore, Singapore

[19] Dover Pk Hosp, Singapore, Singapore

[20] St Andrews Community Hosp, Singapore, Singapore

来源：

JOURNAL OF ALZHEIMERS DISEASE | 2020年 / 75卷 / 02期

关键词：

Dementia; end of life; health care utilization; palliative care; Singapore; OF-LIFE CARE; END-STAGE DEMENTIA; INFORMAL CAREGIVERS; FUNCTIONAL ASSESSMENT; ALZHEIMERS-DISEASE; NURSING-HOME; COGNITIVE IMPAIRMENT; MODERATE DEMENTIA; COPING STRATEGIES; HOSPITAL ANXIETY;

D O I：

10.3233/JAD-190897

中图分类号：

Q189 [神经科学];

学科分类号：

071006 ;

摘要：

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 subsample 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.

引用

页码：403 / 416

页数：14

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