Hostname: page-component-cd9895bd7-gbm5v Total loading time: 0 Render date: 2024-12-31T17:06:54.908Z Has data issue: false hasContentIssue false
  • English
  • Français

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].
Get access

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 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Association. (2007). Alzheimer's Disease Facts and Figures. Chicago, IL: Alzheimer's Association.Google Scholar
Alzheimer's Australia. (2003). The Dementia Epidemic: Economic Impact and Positive. Solutions for Australia. Canberra, Australia: Access Economics.Google Scholar
Alzheimer's Disease Association. (2013). Dementia: The Chronic Disease of the 21st Century. Available at: http://www.alz.org.sg; last accessed 7 March 2013.Google Scholar
Aoyagi, Y. and Shephard, R. J. (2011). A model to estimate the potential for a physical activity-induced reduction in healthcare costs for the elderly, based on pedometer/accelerometer data from the Nakanojo Study. Sports Medicine, 41, 695–708.CrossRefGoogle Scholar
Bakker, C.et al. (2012). Predictors of the time to institutionalization in young- versus late-onset dementia: results from the Needs in Young Onset Dementia (NeedYD) study. Journal of the American Medical Directors Association, 14, 248–253.CrossRefGoogle ScholarPubMed
Boughtwood, D.et al. (2012). Dementia information for culturally and linguistically diverse communities: sources, access and considerations for effective practice. Australia Journal of Primary Health, 18, 190–196.CrossRefGoogle ScholarPubMed
Boyatzis, R. E. (1998). Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage.Google Scholar
Brodaty, H. and Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11, 217–228.CrossRefGoogle ScholarPubMed
Brodaty, H., Thomson, C., Thompson, C. and Fine, M. (2005). Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20, 537–546.CrossRefGoogle ScholarPubMed
Chan, A. (1997). An overview of the living arrangements and social support exchanges of older Singaporeans. Asia-Pacific Population Journal, 12, 35–50.CrossRefGoogle ScholarPubMed
Chan, S. W. (2010). Family caregiving in dementia: the Asian perspective of a global problem. Dementia and Geriatric Cognitive Disorders, 30, 469–478.CrossRefGoogle ScholarPubMed
Chiu, T.et al. (2009). Internet-based caregiver support for Chinese Canadians taking care of a family member with Alzheimer's disease and related dementia. Canadian Journal on Aging, 28, 323–336.CrossRefGoogle Scholar
Chow, T. W., Pio, F. J. and Rockwood, K. (2011). An international needs assessment of caregivers for frontotemporal dementia. Canadian Journal of Neurological Sciences, 38, 753–757.CrossRefGoogle ScholarPubMed
Department of Statistics, Republic of Singapore. (2010). Census of Population. Available at: http://www.singstat.gov.sg/pubn/popn/c2010sr1/cop2010sr1.pdf; last accessed 3 March 2013.Google Scholar
Hampel, H.et al. (2011). The future of Alzheimer's disease: the next 10 years. Progress in Neurobiology, 95, 718–728.CrossRefGoogle ScholarPubMed
Hirakawa, Y., Kuzuya, M., Enoki, H. and Uemura, K. (2011). Information needs and sources of family caregivers of home elderly patients. Archives of Gerontology and Geriatrics, 52, 202–205.CrossRefGoogle ScholarPubMed
Hsu, C. and Sanford, B. A. (2007). The Delphi technique: making sense of consensus. Practical Assessment, Research & Evaluation, 12, 1–8.Google Scholar
Kurasawa, S.et al. (2012). Factors influencing caregivers’ burden among family caregivers and institutionalization of in-home elderly people cared for by family caregivers. Environmental Health and Preventive Medicine, 17, 474–483.CrossRefGoogle ScholarPubMed
Laakkonen, M. L., Hölttä, E. H., Savikko, N., Strandberg, T. E., Suominen, M. and Pitkälä, K. H. (2012). Psychosocial group intervention to enhance self-management skills of people with dementia and their caregivers: study protocol for a randomized controlled trial. Trials, 7, 133.CrossRefGoogle Scholar
Lee, S. (2004). Looking after the needs of caregivers. The Straits Times, 14 April, p. 6.Google Scholar
Lai, C. K. Y. and Chung, J. C. C. (2007). Caregivers’ informational needs on dementia and dementia care. Asian Journal of Gerontology and Geriatrics, 2, 78–87.Google Scholar
Li, H., Kyrouac, G. A., McManus, D. Q., Cranston, R. E. and Hughes, S. (2012). Unmet home care service needs of rural older adults with Alzheimer's disease: a perspective of informal caregivers. Journal of Gerontological Social Work, 55, 409–425.CrossRefGoogle ScholarPubMed
Liew, T. M., Luo, N., Ng, W. Y., Chionh, H. L., Goh, J. and Yap, P. (2010). Predicting gains in dementia caregiving. Dementia and Geriatric Cognitive Disorders, 29, 115–122.CrossRefGoogle ScholarPubMed
Lim, J., Goh, J., Chionh, H. L. and Yap, P. (2012). Why do patients and their families not use services for dementia? Perspectives from a developed Asian country. International Psychogeriatrics, 24, 1571–1580.CrossRefGoogle Scholar
Lim, P. P., Sahadevan, S., Choo, G. K. and Anthony, P. (1999). Burden of caregiving in mild to moderate dementia: an Asian experience. International Psychogeriatrics, 11, 411–420.CrossRefGoogle ScholarPubMed
Martín-Carrasco, M.et al. (2009). Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients’ caregivers. International Journal of Geriatric Psychiatry, 24, 489–499.CrossRefGoogle ScholarPubMed
Mehta, K. K. (2005). Stress among family caregivers of older persons in Singapore. Journal of Cross-Cultural Gerontology, 20, 319–334.CrossRefGoogle ScholarPubMed
Meiland, F. J., Kat, M. G., van Tilburg, W., Jonker, C. and Dröes, R. M. (2005). The emotional impact of psychiatric symptoms in dementia on partner caregivers: do caregiver, patient, and situation characteristics make a difference? Alzheimer Disease and Associated Disorders, 19, 195–201.CrossRefGoogle Scholar
Ministry of Community Development, Youth and Sports. (2005). National Survey of Senior Citizen in Singapore. Available at: http://app.msf.gov.sg/portals/0/Summary/publication/NSSC-2005.pdf; last accessed on 17 May 2013.Google Scholar
Morgan, D. (1996). Focus groups. Annual Review of Sociology, 22, 129–152.CrossRefGoogle Scholar
Ng, L. L. (2003). The development of geriatric psychiatry services in Singapore. Annals Academy of Medicine Singapore, 32, 728–730.Google ScholarPubMed
Nieboer, A. P., Koolman, X. and Stolk, E. A. (2010). Preferences for long-term care services: willingness to pay estimates derived from a discrete choice experiment. Social Science and Medicine, 70, 1317–1325.CrossRefGoogle ScholarPubMed
Ornstein, K. and Gaugler, J. E. (2012). The problem with “problem behaviors”: a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient-caregiver dyad. International Psychogeriatrics, 24, 1536–1552.CrossRefGoogle ScholarPubMed
Pimouguet, C., Lavaud, T., Dartigues, J. F. and Helmer, C. (2010). Dementia case management effectiveness on health care costs and resource utilization: a systematic review of randomized controlled trials. Journal of Nutrition Health and Aging, 14, 669–676.CrossRefGoogle ScholarPubMed
Pinquart, M. and Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging, 18, 250–267.CrossRefGoogle ScholarPubMed
Raivio, M.et al. (2007). How do officially organized services meet the needs of elderly caregivers and their spouses with Alzheimer's disease? American Journal of Alzheimers Disease and Other Dementias, 22, 360–368.CrossRefGoogle ScholarPubMed
Silva, P., Kergoat, M. J. and Shatenstein, B. (2013). Challenges in managing the diet of older adults with early-stage Alzheimer dementia: a caregiver perspective. Journal of Nutrition Health and Aging, 17, 142–147.CrossRefGoogle ScholarPubMed
Sitoh, Y. Y. (2003). Aged care services in Singapore – an overview. Annals Academy of Medicine Singapore, 32, 717–722.Google ScholarPubMed
Stajduhar, K. I., Funk, L., Toye, C., Grande, G. E., Aoun, S. and Todd, C. J. (2010). Part 1: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24, 573–593.CrossRefGoogle Scholar
Strauss, A. and Corbin, J. (1998). Basics of Qualitative Research: Grounded Theory Procedures and Techniques, 2nd edn.Thousand Oaks, CA: Sage.Google Scholar
Tan, L. L., Wong, H. B. and Allen, H. (2005). The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore. International Psychogeriatrics, 17, 253–263.CrossRefGoogle ScholarPubMed
Teo, P. (1996). Ageing trends – aging in Singapore. Journal of Cross-Cultural Gerontology, 11, 269–286.CrossRefGoogle ScholarPubMed
Tew, C. W., Tan, L. F., Luo, N., Ng, W. Y. and Yap, P. (2010). Why family caregivers choose to institutionalize a loved one with dementia: a Singapore perspective. Dementia and Geriatric Cognitive Disorders, 30, 509–516.CrossRefGoogle ScholarPubMed
Thompson, J. P., Riley, C. M., Eberlein, R. L. and Matchar, D. B. (2012). Future living arrangements of Singaporeans with age-related dementia. International Psychogeriatrics, 24, 1592–1599.CrossRefGoogle ScholarPubMed
United Nations Department of Economic and Social Affairs. (2010). World Population Prospects, the 2010 Revision. Available at: http://esa.un.org/wpp/; last accessed 3 March 2013.Google Scholar
Wackerbarth, S. B. and Johnson, M. M. (2002). Essential information and support needs of family caregivers. Patient Education and Counseling, 47, 95–100.CrossRefGoogle ScholarPubMed
Wancata, J.et al. (2005). The Carers’ Needs Assessment for Dementia (CNA-D): development, validity and reliability. International Psychogeriatrics, 17, 393–406.CrossRefGoogle ScholarPubMed
Wang, Y. N., Shyu, Y. I., Tsai, W. C., Yang, P. S. and Yao, G. (2012). Exploring conflict between caregiving and work for caregivers of elders with dementia: a cross-sectional, correlational study. Journal of Advanced Nursing, 69, 1051–1062.CrossRefGoogle ScholarPubMed
Washington, K. T., Meadows, S. E., Elliott, S. G. and Koopman, R. J. (2011). Information needs of informal caregivers of older adults with chronic health conditions. Patient Education and Counseling, 83, 37–44.CrossRefGoogle ScholarPubMed
Zwaanswijk, M., Peeters, J. M., van Beek, A. P., Meerveld, J. H. and Francke, A. L. (2013). Informal caregivers of people with dementia: problems, needs and support in the initial stage and in subsequent stages of dementia: a questionnaire survey. Open Nursing Journal, 7, 6–13.CrossRefGoogle ScholarPubMed