An interpretative phenomenological analysis (IPA) of coercion towards community dwelling older adults with dementia: findings from Mysore studies of natal effects on ageing and health (MYNAH)

Abstract

PurposeLimited availability of specialist services places a considerable burden on caregivers of Persons with Dementia (PwD) in Low- and Middle-Income Countries (LMICs). There are limited qualitative data on coercive behavior towards PwD in an LMIC setting.AimThe aim of this study was to find relevant themes of the lived experience of relatives as caregivers for PwD in view of their use of coercive measures in community setting in South India.MethodPrimary caregivers (n = 13) of PwDs from the Mysore study of Natal effects on Ageing and Health (MYNAH) in South India were interviewed to explore the nature and impact of coercion towards community dwelling older adults with dementia. The narrative data were coded using an Interpretative Phenomenological Analysis (IPA) approach for thematic analysis and theory formation.ResultsCaregivers reported feeling physical and emotional burn-out, a lack of respite care, an absence of shared caregiving arrangements, limited knowledge of dementia, and a complete lack of community support services. They reported restrictions on their lives through not being able take employment, a poor social life, reduced income and job opportunities, and restricted movement that impacted on their physical and emotional well-being. Inappropriate use of sedatives, seclusion and environmental restraint, and restricted dietary intake, access to finances and participation in social events, was commonly reported methods of coercion used by caregivers towards PwD. Reasons given by caregivers for employing these coercive measures included safeguarding of the PwD and for the management of behavioral problems and physical health.ConclusionThere is an urgent need for training health and social care professionals to better understand the use of coercive measures and their impact on persons with dementia in India. It is feasible to conduct qualitative research using IPA in South India.

The caregiving phenomenon and caregiver participation in dementia

“…There are ethical challenges to caregiving. Caregivers may negotiate to gain consent or get a patient to collaborate, or outright resort to coercion to administer caregiving . In practice, a patient's ability to provide consent may need to be constantly evaluated .…”

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“…The findings here confirm this experience and develops this to show that these difficulties can lead to caregivers adopting potential risky care practices, out of desperation, which could result in unintentional abuse, abandonment or neglect of their relative. Another qualitative study carried out by Danivas et al (2016) found family carers had similar concerns about their relative's safety in the home environment. The study found that family carers routinely used various coercive measures on their family member with dementia, including the use of psychotropic medicines, physical restraints, isolation, restriction of fluids and food and preventing access to finances.…”

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