Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

Louise Ritchie*, Anna Jack-Waugh, Elsa Sanatombi Devi, Binil V, Anice George, Joyce Henry, Clarita Shynal Martis, Debjani Gangopadhyay, Debbie Tolson

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Purpose
Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The aim of this project, was to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.

Methodology

Three focus groups with family carers of people (n=27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.

Findings
The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describes the potential harm, abuse and poor mental wellbeing facing both the person with dementia and the family carer as a result of their situation.

Research implications
There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.

Practical implications
The findings highlight a lack of support for family carers of people with advanced dementia and demonstrates the need for dementia-specific integrated and palliative care approaches in India.

Originality/value
This paper provides insight into the experiences and challenges facing family carers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.
Original languageEnglish
Pages (from-to)337-348
Number of pages12
JournalJournal of Integrated Care
Volume28
Issue number4
DOIs
Publication statusPublished - 28 May 2020

Keywords

  • advanced dementia
  • family carers
  • palliative care
  • integrated care
  • India
  • focus groups

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