Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study

ABSTRACT

Objectives

There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India.

Methods

Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis.

Results

The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program.

Conclusions

The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care.

Clinical Implications

The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings.

KEYWORDS:

• Dementia
• family caregivers
• focus groups
• India
• online training and support program

Clinical implications

• Understanding caregivers’ requirements from online training and support programs for dementia care can be used for the adaptability and suitability of such services in developing countries like India.

• Inclusion of culturally relevant information about dementia highlighting early signs, causes, symptoms, treatment, prevention, support services, and addressing caregiver’s well-being in such programs could facilitate the use of support services for dementia care.

• The online caregiver support program can be an important source for finding dementia-related information for caregivers who reside in parts of the country where in-person support is not easily accessible.

Acknowledgments

The authors would like to thank Diana Zandi from World Health Organization for her comments on prior versions of this manuscript. The authors would also like to thank everyone who participated in the study, especially, the caregivers and the health professionals who took part in the focus groups and provided their valuable inputs. The ideas and opinions expressed herein are those of the authors alone, and endorsement by the authors’ institutions or the funding agency is not intended and should not be inferred.

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethical Principles

The authors affirm having followed professional ethical guidelines in preparing this work. These guidelines include obtaining informed consent from human participants, maintaining ethical treatment and respect for the rights of human or animal participants, and ensuring the privacy of participants and their data, such as ensuring that individual participants cannot be identified in reported results or from publicly available original or archival data.

Role of the Funders/Sponsors

None of the funders or sponsors of this research had any role in the design and conduct of the study; collection, management, analysis, and interpretation of data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

Supplementary material

Supplemental data for this article can be accessed here.

Additional information

Funding

This work was supported by Grant # ETAC 13-280725 from the US National Office of the Alzheimer’s Association to the World Health Organization; US National Office of the Alzheimer’s Association [Grant # ETAC 13-280725].