Understanding, experiences and attitudes of dementia in India: A qualitative study

被引：12

作者：

Hurzuk, Saadiya ^{[1
]}

Farina, Nicolas ^{[2
,3
]}

Pattabiraman, Meera ^{[4
]}

Ramasamy, Narendhar ^{[4
]}

Alladi, Suvarna ^{[5
]}

Rajagopalan, Jayeeta ^{[6
]}

Comas-Herrera, Adelina ^{[7
]}

Thomas, Priya Treesa ^{[8
]}

Evans-Lacko, Sara ^{[9
]}

机构：

[1] Alzheimers & Related Disorders Soc India ARDSI, Strengthening Responses Dementia Developing Count, RZ B-16, New Delhi 110045, India

[2] Ctr Dementia Studies, Brighton, E Sussex, England

[3] Univ Sussex, Sussex Med Sch, Brighton, E Sussex, England

[4] Alzheimers & Related Disorders Soc India ARDSI, New Delhi, India

[5] Natl Inst Mental Hlth & Neuro Sci NIMHANS, Dept Neurol Strengthening Responses Dementia Deve, Bangalore, Karnataka, India

[6] Natl Inst Mental Hlth & Neuro Sci NIMHANS, Strengthening Responses Dementia Developing Count, Bangalore, Karnataka, India

[7] London Sch Econ & Polit Sci LSE, Strengthening Responses Dementia Developing Count, London, England

[8] Natl Inst Mental Hlth & Neuro Sci NIMHANS, Dept Psychiat Social Work, Bangalore, Karnataka, India

[9] London Sch Econ & Polit Sci LSE, Care Policy & Evaluat Ctr, London, England

来源：

DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE | 2022年 / 21卷 / 07期

基金：

英国科研创新办公室;

关键词：

dementia; stigma; awareness; India; culture; aging; qualitative study; LANGUAGE; STIGMA; HEALTH;

D O I：

10.1177/14713012221118774

中图分类号：

R4 [临床医学]; R592 [老年病学];

学科分类号：

1002 ; 100203 ; 100602 ;

摘要：

India is the world's second-most populous country and there are about 5.3 million people with dementia in India. Only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to deliver dementia care and support to people living with dementia and their carers. Furthermore, there is inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience, in addition, it makes the persons with dementia and carers feel isolated and stigmatised. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons with dementia (n = 8), caregivers (n = 19), health care professionals (n = 16) and the general public (n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia.

引用

页码：2288 / 2306

页数：19