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

Kim-Huong Nguyen,Tracy Comans

doi:10.3390/healthcare9010044

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.

Highlights

People with Dementia Visible in People with dementia who live in the community often rely on assistance from caregivers to perform daily functions
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

Summary

Introduction

People with Dementia Visible in People with dementia who live in the community often rely on assistance from caregivers to perform daily functions. Caregivers are family and/or friends (informal), or paid care workers (formal). Assistance and care activities range from safety and well-being support to personal and instrumental activities of daily living [1]. On average, caregivers spent close to 4 hours per day providing assistance and care for the person with dementia [2]. A global cost of dementia study estimated that close to a half of the economic cost was in some form of informal care.

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