Dementia care in Indonesia: care networks, awareness & perception

Abstract

Estimates of dementia prevalence in Indonesia widely vary between studies (9–28%), and little is known about the awareness and perception of dementia and the care networks around those living with (suspected) dementia. This study aims to explore dementia care and awareness in Indonesia. We combine a review of the scientific literature with observational and interview data from an ethnographic study across five sites in Indonesia. We found that awareness of dementia and resources for dementia-specific care are limited in Indonesia. Daily care for people with dementia is performed mainly by family carers with little support. Professional dementia care in Indonesia is rarely mentioned, but a small proportion of the population can access knowledgeable volunteers. Awareness of dementia is low in our study sample, and numerous misconceptions about dementia exist. It is widely perceived as part of normal ageing, and consequently many people with suspected dementia function well, stay active and connected within the community. They are often not recognized as having a health- or cognitive issue, but receive physical, ADL or material care in their homes. When dementia affects people’s behaviour or personality, they may be stigmatized or kept behind locked doors. Recommendations include increasing awareness of dementia symptoms in general and associated unmet needs, as well as a more inclusive style of caregiving and drawing on strengths of Indonesian social structures.

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ORCID for Elisabeth Schröder-Butterfill: orcid.org/0000-0002-5071-8710

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