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Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

ABSTRACT: The dyadic perspective is important to understand the mutual influence and interdependence of both the person living with dementia and their care partner. This perspective is routinely adopted in social research programs for dementia and many dyadic interventions have been developed. However, economic evaluation and modelling to date has often failed to incorporate caregivers' perspectives, and their respective costs and outcomes while giving care for the person with dementia. On the occasions that this has been done, caregivers were represented as "informal costs" associated with dementia. This limited perspective cannot incorporate two-way interactions of the dyad in economic evaluations of dementia programs. This paper provides an overview of the possible interactions between people living with dementia and care partners as discovered in social science literature in the past 20 years. We demonstrate the strength of the relationships and discuss strategies for incorporating the dyadic perspective in economic evaluations of dementia programs in the future.

SUBMITTER: Nguyen KH

PROVIDER: S-EPMC7824847 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

Nguyen Kim-Huong KH Comans Tracy T

Healthcare (Basel, Switzerland) 20210105 1

The dyadic perspective is important to understand the mutual influence and interdependence of both the person living with dementia and their care partner. This perspective is routinely adopted in social research programs for dementia and many dyadic interventions have been developed. However, economic evaluation and modelling to date has often failed to incorporate caregivers' perspectives, and their respective costs and outcomes while giving care for the person with dementia. On the occasions t ...[more]

PMID: 33466492

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Project description:The arts can aid the exploration of individual and collective illness narratives, with empowering effects on both patients and caregivers. The artist, partly acting as conduit, can translate and re-present illness experiences into artwork. But how are these translated experiences received by the viewer-and specifically, how does an audience respond to an art installation themed around paediatric heart transplantation and congenital heart disease? The installation, created by British artist Sofie Layton and titled Making the Invisible Visible, was presented at an arts-and-health event. The piece comprised three-dimensional printed medical models of hearts with different congenital defects displayed under bell jars on a stainless steel table reminiscent of the surgical theatre, surrounded by hospital screens. The installation included a soundscape, where the voice of a mother recounting the journey of her son going through heart transplantation was interwoven with the voice of the artist reading medical terminology. A two-part survey was administered to capture viewers' expectations and their response to the piece. Participants (n=125) expected to acquire new knowledge around heart disease, get a glimpse of patients' experiences and be surprised by the work, while after viewing the piece they mostly felt empathy, surprise, emotion and, for some, a degree of anxiety. Viewers found the installation more effective in communicating the experience of heart transplantation than in depicting the complexity of cardiovascular anatomy (p<0.001, z=7.56). Finally, analysis of open-ended feedback highlighted the intimacy of the installation and the privilege viewers felt in sharing a story, particularly in relation to the soundscape, where the connection to the narrative in the piece was reportedly strengthened by the use of sound. In conclusion, an immersive installation including accurate medical details and real stories narrated by patients can lead to an empathic response and an appreciation of the value of illness narratives.

Project description:BackgroundUse of companion robots may reduce older people's depression, loneliness and agitation. This benefit has to be contrasted against possible ethical concerns raised by philosophers in the field around issues such as deceit, infantilisation, reduced human contact and accountability. Research directly assessing prevalence of such concerns among relevant stakeholders, however, remains limited, even though their views clearly have relevance in the debate. For example, any discrepancies between ethicists and stakeholders might in itself be a relevant ethical consideration while concerns perceived by stakeholders might identify immediate barriers to successful implementation.MethodsWe surveyed 67 younger adults after they had live interactions with companion robot pets while attending an exhibition on intimacy, including the context of intimacy for older people. We asked about their perceptions of ethical issues. Participants generally had older family members, some with dementia.ResultsMost participants (40/67, 60%) reported having no ethical concerns towards companion robot use when surveyed with an open question. Twenty (30%) had some concern, the most common being reduced human contact (10%), followed by deception (6%). However, when choosing from a list, the issue perceived as most concerning was equality of access to devices based on socioeconomic factors (m = 4.72 on a scale 1-7), exceeding more commonly hypothesized issues such as infantilising (m = 3.45), and deception (m = 3.44). The lowest-scoring issues were potential for injury or harm (m = 2.38) and privacy concerns (m = 2.17). Over half (39/67 (58%)) would have bought a device for an older relative. Cost was a common reason for choosing not to purchase a device.ConclusionsAlthough a relatively small study, we demonstrated discrepancies between ethical concerns raised in the philosophical literature and those likely to make the decision to buy a companion robot. Such discrepancies, between philosophers and 'end-users' in care of older people, and in methods of ascertainment, are worthy of further empirical research and discussion. Our participants were more concerned about economic issues and equality of access, an important consideration for those involved with care of older people. On the other hand the concerns proposed by ethicists seem unlikely to be a barrier to use of companion robots.

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Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

Publications

Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

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