Development and acceptability of a brief, evidence-based Dementia Awareness for Caregivers course in low- and middle-income countries

Author:

Stoner Charlotte R1,Lakshminarayanan Monisha2,Mograbi Daniel C3,Vaitheswaran Sridhar2ORCID,Bertrand Elodie4,Schimidt Brum Paula5,Durgante Helen6,Ferri Cleusa P7,Mkenda Sarah8,Walker Richard9,Dotchin Catherine10,Paddick Stella-Maria11,Chandra Mina12,Krishna Murali13,Du Bharath14,Shaji Kunnukattil S15,Fisher Emily16ORCID,Spector Aimee16ORCID

Affiliation:

1. Centre for Chronic Illness and Ageing, Institute for Lifecourse Development, School of Human Sciences, University of Greenwich, London, UK

2. Dementia Care in Schizophrenia Research Foundation (DEMCARES in SCARF), Chennai, Tamil Nadu, India

3. Department of Psychology, Pontifical Catholic University of Rio de Janeiro, Brazil; Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UK

4. Institut de Psychologie, Université de Paris, France

5. Department of Psychiatry, Universidade Federal de São Paulo, Brazil

6. Psychology Department, Universidade Federal do Rio Grande (FURG), Rio de Janeiro, Brazil

7. Department of Psychiatry, Universidade Federal de São Paulo, Brazil; Health Technology Assessment Unit, Hospital Alemão Oswaldo Cruz, Brazil

8. Occupational Therapy Department, Kilimanjaro Christian Medical University College, Tanzania

9. Population Health Sciences Institute, Newcastle University, UK

10. Population Health Sciences Institute, Newcastle University, UK; North Tyneside General Hospital, Northumbria Healthcare National Health Service Foundation Trust, UK

11. Clinical and Translational Medicine, Newcastle University, Tyne and Wear, UK; Gateshead Health NHS Foundation Trust, UK

12. Centre of Excellence in Mental Health, Atal Bihari Vajpayee Institute of Medical Sciences (formerly Post Graduate Institute of Medical Education and Research) and Dr Ram Manohar Lohia Hospital, India

13. Foundation for Research and Advocacy in Mental Health (FRAMe), Mysore, India

14. Foundation for Research and Advocacy in Mental Health (FRAMe), Mysore, India; Viveka Hospital, Mysore, India

15. Kerala University of Health Sciences, Thrissur, Kerala, India

16. Research Department of Clinical, Educational and Health Psychology, University College London (UCL), London, UK

Abstract

Background Knowledge of and attitudes towards dementia vary across countries, and for caregivers in low- and middle-income countries (LMICs), access to information can be challenging. There is an urgent need for brief, easily accessible and culturally appropriate educational courses for caregivers of persons with dementia, providing much needed information whilst addressing important psychological concepts such as stigma. Methods An international and multidisciplinary team developed Dementia Awareness for Caregivers (DAC) courses in four stages: (1) scoping review and module agreement, (2) development of an International template (DAC-International) containing a standardised process for adding information, (3) development of local DACs using a standardised format and (4) acceptability of courses in Brazil, India and Tanzania. Findings The DAC-International was developed, comprising three modules: ‘What is dementia?’; ‘Positive engagement’ and ‘Caring for someone with dementia’. Three local versions were developed from this (DAC-Brazil, DAC-India and DAC-Tanzania), where additions of country-specific information included prevalent stereotypes and the addition of culturally relevant case studies. An initial field test was conducted in each country ( n = 85), which indicated acceptability to participants. Conclusions The methods used here resulted in culturally valid and acceptable educational courses for carers of people with dementia. Future work will consist of large-scale, formal evaluations and the development of additional local courses.

Funder

Global Alliance for Chronic Diseases (GACD) funding agencies

The United Kingdom Medical Research Council

Indian Council of Medical Research

Publisher

SAGE Publications

Subject

General Social Sciences,Sociology and Political Science,General Medicine

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