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Perceived unmet needs of informal caregivers of people with dementia in Singapore

Published online by Cambridge University Press:  12 July 2013

Janhavi Ajit Vaingankar ,
Mythily Subramaniam ,
Louisa Picco ,
Goi Khia Eng ,
Saleha Shafie ,
Rajeswari Sambasivam ,
Yun Jue Zhang ,
Vathsala Sagayadevan  and
Siow Ann Chong
Janhavi Ajit Vaingankar*
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Mythily Subramaniam
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Louisa Picco
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Goi Khia Eng
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Saleha Shafie
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Rajeswari Sambasivam
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Yun Jue Zhang
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Vathsala Sagayadevan
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
Siow Ann Chong
Affiliation:
Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747
*
Correspondence should be addressed to: Ms. Janhavi Ajit Vaingankar, Research Division, Institute of Mental Health, 10 Buangkok View, Singapore539747. Phone: +65-63892794; Fax: +65-63892795. Email: [email protected].
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Abstract

Background:

This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers’ needs checklist based on the findings.

Methods:

Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers’ experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers’ perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers’ needs for dementia.

Results:

The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed.

Conclusions:

Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.

Keywords

Respiteemotional supportanxietyethnicityneeds’ checklist
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 10 , October 2013 , pp. 1605 - 1619
Copyright
Copyright © International Psychogeriatric Association 2013 

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