Hostname: page-component-cd9895bd7-gxg78 Total loading time: 0 Render date: 2024-12-22T18:14:01.308Z Has data issue: false hasContentIssue false
  • English
  • Français

Delayed help seeking behavior in dementia care: preliminary findings from the Clinical Pathway for Alzheimer's Disease in China (CPAD) study

Published online by Cambridge University Press:  03 July 2015

Mei Zhao ,
Xiaozhen Lv ,
Maimaitirexiati Tuerxun ,
Jincai He ,
Benyan Luo ,
Wei Chen ,
Kai Wang ,
Ping Gu ,
Weihong Kuang  and
Yuying Zhou
...Show all authors
Mei Zhao
Affiliation:
Dementia Care & Research Center, Peking University Institute of Mental Health (Sixth Hospital); Beijing Municipal Key Laboratory for Translational Research on Diagnosis and Treatment of Dementia, Beijing 100191, China National Clinical Research Center for Mental Disorders (Peking University Sixth Hospital); Key Laboratory for Mental Health, Ministry of Health (Peking University), No. 51 Huayuanbei Road, Beijing 100191, China
Xiaozhen Lv
Affiliation:
Dementia Care & Research Center, Peking University Institute of Mental Health (Sixth Hospital); Beijing Municipal Key Laboratory for Translational Research on Diagnosis and Treatment of Dementia, Beijing 100191, China National Clinical Research Center for Mental Disorders (Peking University Sixth Hospital); Key Laboratory for Mental Health, Ministry of Health (Peking University), No. 51 Huayuanbei Road, Beijing 100191, China
Maimaitirexiati Tuerxun
Affiliation:
Dementia Care & Research Center, Peking University Institute of Mental Health (Sixth Hospital); Beijing Municipal Key Laboratory for Translational Research on Diagnosis and Treatment of Dementia, Beijing 100191, China National Clinical Research Center for Mental Disorders (Peking University Sixth Hospital); Key Laboratory for Mental Health, Ministry of Health (Peking University), No. 51 Huayuanbei Road, Beijing 100191, China Department of Geriatrics, The Fourth People's Hospital of Urumqi, Urumqi 830002, Xinjiang Uygur Autonomous Region, China
Jincai He
Affiliation:
Department of Neurology, The First Affiliated Hospital, Wenzhou Medical College, Wenzhou 325000, Zhejiang Province, China
Benyan Luo
Affiliation:
Department of Neurology, The First Affiliated Hospital of Zhejiang University, Hangzhou 310003, Zhejiang Province, China
Wei Chen
Affiliation:
Department of Psychiatry, Sir Run Run Shaw Hospital, School of Medicine, Zhejiang University, Hangzhou 310016, Zhejiang Province, China
Kai Wang
Affiliation:
Department of Neurology, The First Affiliated Hospital of Anhui Medical University, Hefei 230022, Anhui Province, China
Ping Gu
Affiliation:
Department of Neurology, The First Hospital of Hebei Medical University, Shijiazhuang 050031, Hebei Province, China
Weihong Kuang
Affiliation:
Mental Health Center, West China Hospital, Sichuan University, Chengdu 610041, Sichuan Province, China
Yuying Zhou
Affiliation:
Department of Neurology, Tianjin Huanhu Hospital, Tianjin 300060, China
Qiumin Qu
Affiliation:
Department of Neurology, First Affiliated Hospital of Medical College of Xi’an Jiaotong University, Xi'an 710061, Shanxi Province, China
Jianhua He
Affiliation:
Department of Psychological Medicine, Beijing Anzhen Hospital, Capital Medical University, Beijing 100029, China
Nan Zhang
Affiliation:
Department of Neurology, General Hospital, Tianjin Medical University, Tianjin 300052, China
Yongping Feng
Affiliation:
Department of Geriatric Psychiatry, Shandong Mental Health Center, Jinan 250014, Shandong Province, China
Yanping Wang
Affiliation:
Department of Neurology, The Second Affiliated Hospital of Guangzhou Medical University, Guangzhou 510260, Guangdong Province, China
Xin Yu
Affiliation:
Dementia Care & Research Center, Peking University Institute of Mental Health (Sixth Hospital); Beijing Municipal Key Laboratory for Translational Research on Diagnosis and Treatment of Dementia, Beijing 100191, China National Clinical Research Center for Mental Disorders (Peking University Sixth Hospital); Key Laboratory for Mental Health, Ministry of Health (Peking University), No. 51 Huayuanbei Road, Beijing 100191, China
Huali Wang*
Affiliation:
Dementia Care & Research Center, Peking University Institute of Mental Health (Sixth Hospital); Beijing Municipal Key Laboratory for Translational Research on Diagnosis and Treatment of Dementia, Beijing 100191, China National Clinical Research Center for Mental Disorders (Peking University Sixth Hospital); Key Laboratory for Mental Health, Ministry of Health (Peking University), No. 51 Huayuanbei Road, Beijing 100191, China
*
Correspondence should be addressed to: Dr. Huali Wang at Dementia Care & Research Center, Peking University Institute of Mental Health, No. 51 Huayuanbei Road, Beijing 100191, China. Phone: +86 1082801983. Email: [email protected].
Get access

Abstract

Background:

The prevalence and factors associated with delays in help seeking for people with dementia in China are unknown.

Methods:

Within 1,010 consecutively registered participants in the Clinical Pathway for Alzheimer's Disease in China (CPAD) study (NCT01779310), 576 persons with dementia (PWDs) and their informants reported the estimated time from symptom onset to first medical visit seeking diagnosis. Univariate analysis of general linear model was used to examine the potential factors associated with the delayed diagnosis seeking.

Results:

The median duration from the first noticeable symptom to the first visit seeking diagnosis or treatment was 1.77 years. Individuals with a positive family history of dementia had longer duration (p = 0.05). Compared with other types of dementia, people with vascular dementia (VaD) were referred for diagnosis earliest, and the sequence for such delays was: VaD < Alzheimer's disease (AD) < frontotemporal dementia (FTD) (p < 0.001). Subtypes of dementia (p < 0.001), family history (p = 0.01), and education level (p = 0.03) were associated with the increased delay in help seeking.

Conclusions:

In China, seeking diagnosis for PWDs is delayed for approximately 2 years, even in well-established memory clinics. Clinical features, family history, and less education may impede help seeking in dementia care.

Keywords

dementiaduration of delayhelp-seeking behavior
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 2 , February 2016 , pp. 211 - 219
Copyright
Copyright © International Psychogeriatric Association 2015 

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

Al-Qazzaz, N. K., Ali, S. H., Ahmad, S. A., Islam, S. and Mohamad, K. (2014). Cognitive impairment and memory dysfunction after a stroke diagnosis: a post-stroke memory assessment. Neuropsychiatric Disease Treatment, 10, 1677–1691.CrossRefGoogle ScholarPubMed
Bamford, C., Eccles, M., Steen, N. and Robinson, L. (2007). Can primary care record review facilitate earlier diagnosis of dementia? Family Practice, 24, 108–116.CrossRefGoogle ScholarPubMed
Boustani, M., Peterson, B., Hanson, L., Harris, R. and Lohr, K. N. (2003). Screening for dementia in primary care: a summary of the evidence for the US preventive services task force. Annals of Internal Medicine, 138, 927–937.CrossRefGoogle Scholar
Boustani, M. et al. (2005). Implementing a screening and diagnosis program for dementia in primary care. Journal of General Internal Medicine, 20, 572–577.CrossRefGoogle ScholarPubMed
Chen, R., Hu, Z., Chen, R. L., Ma, Y., Zhang, D. and Wilson, K. (2013). Determinants for undetected dementia and late-life depression. British Journal of Psychiatry, 203, 203–208.CrossRefGoogle ScholarPubMed
Chrisp, T. A., Tabberer, S., Thomas, B. D. and Goddard, W. A. (2012). Dementia early diagnosis: triggers, supports and constraints affecting the decision to engage with the healthcare system. Aging & Mental Health, 16, 559–565.CrossRefGoogle Scholar
Dai, B., Mao, Z., Wu, B., Mei, Y. J., Levkoff, S. and Wang, H. (2015). Family caregiver's perception of Alzheimer's disease and caregiving in Chinese culture. Social Work in Public Health, 30, 185–196.CrossRefGoogle ScholarPubMed
de Vugt, M. E. and Verhey, F. R. (2013). The impact of early dementia diagnosis and intervention on informal caregivers. Progress in Neurobiology, 110, 54–62.CrossRefGoogle ScholarPubMed
Downs, M. and Bowers, B. (2008). Caring for people with dementia. BMJ, 336, 225–226.CrossRefGoogle ScholarPubMed
Hansen, E. C., Hughes, C., Routley, G. and Robinson, A. L. (2008). General practitioners’ experiences and understandings of diagnosing dementia: factors impacting on early diagnosis. Social Science & Medicine, 67, 1776–1783.CrossRefGoogle ScholarPubMed
Holzer, C. and Warshaw, G. (2000). Clues to early Alzheimer dementia in the outpatient setting. Archives of Family Medicine, 9, 1066–1070.CrossRefGoogle ScholarPubMed
Hu, L. L. (2014). Effectiveness of Training on Skills for Early Recognition of Dementia for Community Doctors. Institute of Mental Health: Peking University.Google Scholar
Iliffe, S., Manthorpe, J. and Eden, A. (2003). Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study. Family Practice, 20, 376–381.CrossRefGoogle ScholarPubMed
Iliffe, S. et al. (2009). Primary care and dementia: diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry, 24, 895–901.CrossRefGoogle ScholarPubMed
Jiang, R., Shan, X., Zhang, R. and Wang, X. (2009). Comparison between doctors and nurses cognition about the senile dementia. Chinese Journal of Healthcare, 12, 194–195.Google Scholar
John, C., Weintraub, S., Chui, H. C. and Cummings, J. (2006). The uniform data set (UDS): clinical and cognitive variables and descriptive data from Alzheimer Disease Centers. Alzheimer Disease and Associated Disorders, 20, 210–216.Google Scholar
Larner, A. J. (2013). Subjective memory complaints: is family history of dementia a risk factor? Journal of the Neurological Sciences, 333, e295.CrossRefGoogle Scholar
Leung, K. K. et al. (2011). Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians. Health & Social Care in the Community, 19, 372–381.CrossRefGoogle ScholarPubMed
LoGiudice, D. and Watson, R. (2014). Dementia in older people: an update. International Medicine Journal, 44, 1066–1073.CrossRefGoogle ScholarPubMed
Mackenzie, C. S., Gekoski, W. L. and Knox, V. J. (2006). Age, gender, and the underutilization of mental health services: the influence of help-seeking attitudes. Aging & Mental Health, 10, 574–582.CrossRefGoogle ScholarPubMed
McCleary, L. et al. (2013). Pathways to dementia diagnosis among South Asian Canadians. Dementia (London), 12, 769–789.CrossRefGoogle ScholarPubMed
Passant, U., Elfgren, C., Englund, E. and Gustafson, L. (2005). Psychiatric symptoms and their psychosocial consequences in frontotemporal dementia. Alzheimer Disease and Associated Disorders, 19 (Suppl. 1), S15–S18.CrossRefGoogle ScholarPubMed
Pentzek, M. et al. (2009). Apart from nihilism and stigma: what influences general practitioners’ accuracy in identifying incident dementia? American Journal of Geriatric Psychiatry, 17, 965–975.CrossRefGoogle ScholarPubMed
Ramakers, I. H., Visser, P. J., Bittermann, A. J., Ponds, R. W., van Boxtel, M. P. and Verhey, F. R. (2009). Characteristics of help-seeking behaviour in subjects with subjective memory complaints at a memory clinic: a case-control study. International Journal of Geriatric Psychiatry, 24, 190–196.CrossRefGoogle Scholar
Rosness, T. A., Haugen, P. K., Passant, U. and Engedal, K. (2008). Frontotemporal dementia: a clinically complex diagnosis. International Journal of Geriatric Psychiatry, 23, 837–842.CrossRefGoogle ScholarPubMed
Salloway, S. and Correia, S. (2009). Alzheimer disease: time to improve its diagnosis and treatment. Cleveland Clinic Journal of Medicine, 76, 49–58.CrossRefGoogle ScholarPubMed
Speechly, C. M., Bridges-Webb, C. and Passmore, E. (2008). The pathway to dementia diagnosis. Medical Journal of Australia, 189, 487–489.CrossRefGoogle ScholarPubMed
Tedstone Doherty, D. and Kartalova-O’Doherty, Y. (2010). Gender and self-reported mental health problems: predictors of help seeking from a general practitioner. British Journal of Health Psychology, 15, 213–228.CrossRefGoogle ScholarPubMed
Tijhuis, M. A., Peters, L. and Foets, M. (1990). An orientation toward help-seeking for emotional problems. Social Science & Medicine, 31, 989–995.CrossRefGoogle ScholarPubMed
Valcour, V. G., Masaki, K. H., Curb, J. D. and Blanchette, P. L. (2000). The detection of dementia in the primary care setting. Archives of International Medicine, 160, 2964–2968.CrossRefGoogle ScholarPubMed
van Vliet, D. et al. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404.CrossRefGoogle ScholarPubMed
van Vliet, D. et al. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43, 423–432.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M. J. et al. (2005). Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. International Journal of Geriatric Psychiatry, 20, 377–386.CrossRefGoogle ScholarPubMed
Wilkinson, D., Stave, C., Keohane, D. and Vincenzino, O. (2004). The role of general practitioners in the diagnosis and treatment of Alzheimer's disease: a multinational survey. Journal of International Medical Research, 32, 149–159.CrossRefGoogle ScholarPubMed
World Health Organization (2012). Dementia: A Public Health Priority. Geneva, CH: WHO Press.Google Scholar
Yang, Y. H. et al. (2014). Characteristics of Alzheimer's disease among patients in Taiwan, Hong Kong, and Beijing. Journal of Alzheimers Disease, 42, 193–200.CrossRefGoogle ScholarPubMed
Zeng, F. et al. (2015). General public perceptions and attitudes toward Alzheimer's disease from five cities in China. Journal of Alzheimers Disease, 43, 511–518.CrossRefGoogle ScholarPubMed