Minna Zechner, University of Helsinki

Karen Duncan, University of Manitoba

Access to public health and long-term care helps ensure a life of dignity and equality, protecting rights of older adults in need of care and family carers who provide most of that care. However, UN Sustainable Development Goals indicators include household expenditure on primary health care but not on long-term or social care, and the European Commission identifies financial resources as significant barriers to long-term and social care access. Care-related out-of-pocket expenses (OPE) by older adults and family carers may exceed their disposable income, forcing impossible choices among life essentials like food, medicine, and care services. In the United States one in six older adults with care needs face catastrophic expenses (>40% of disposable income), while nearly18% of Canadian family carers reported that OPE caused them financial hardship.

This symposium focuses on care-related OPE by care receivers and carers and resulting consequences such as insufficient or inadequate care, unsafe living environments, deteriorating health, and financial insecurity. Four symposium papers address the costs of care from diverse perspectives: social and policy contexts (North America, Europe, Asia), care sector (care receivers, family carers and public services), expense type (goods and services) and via qualitative and quantitative data.

Rainville et al. share estimates of US caregivers’ OPE from survey and diary data. Duncan et al. examine the relationship between OPE and financial hardship for low- income carers in Canada. Niemelä et al. report on qualitative interviews with Finnish care receivers about what care costs they consider excessive v. value for money. Ikeda et al. discuss implications of Japan’s long-term care insurance scheme for working caregivers and the expenses of private services. Discussants Robert Anderson and Päivi Topo will highlight the symposium’s key question as to whether private care-related expenditures deprive care receivers and carers of fundamental rights to adequate care and financial security.

Papers:

Chuck Rainville, Alessandra Raimondi, & Selena Caldera (AARP, USA): ‘Caregiving’s Cost, Economic Value, and Promising Practices to Support Caregiver’s Financial Well- Being’. The authors estimate the annual economic value of family caregiving in the US using data from the AARP Caregiver Out-of-Pocket Costs study, which estimates caregivers’ care-related expenses based on both survey data and a diary study, and the latest data on the financial and employment impacts of caregiving on family caregivers from the 2025 Caregiving in the US study.

Karen Duncan, Shahin Shooshtari, Janet Fast, & Md. Aslam Hossain (University of Manitoba & University of Alberta, Canada): ‘Financial hardship among carers in low-income: The role of care-related out-of-pocket expenditures.’ The most recent Canadian survey data are used by the authors to investigate the relationship between care-related OPE and financial hardship among carers in low-income. The results have implications for the ability of carers to provide for their own care needs in later life.

Viivi Niemelä, Minna Zechner, Motoko Ishikawa & Laura Saarukka (University of Helsinki, Finland): ‘Out-of-pocket expenditure: Value for money or not worth spending?’ Qualitative analysis of interviews with older adults and their carers on what they consider expensive and value for money regarding OPE are provided by the authors, who also supplement their work with survey data on older adults’ views on affordability of health and social care.

Shingou Ikeda (Japan Institute for Labor Policy and Training, Japan): ‘Expectation and Reality of out-of-pocket expenses of services for combining work and elder care’. Analysis of quantitative survey data on out-of-pocket expenses to provide care to later life families, focusing on working carers who report that Long-term Care Insurance care services are insufficient to enable combining work and care. The Japanese government stresses expanding private care services in addition to public long-term care insurance services to support working carers. The OPE of private care services create a financial strain on working carers.

Discussants:

Robert Anderson, Chairperson of the Administrative Board, Family Carers Ireland; Chairperson of the Advisory Board, ESRC Centre for Care, Sheffield; former Head of Social Policies, Eurofound will compare the presentations in light of policy frameworks and instruments.

Päivi Topo (Adjunct Professor), Ombudsman for older people in Finland considers the financial costs of care as social and human rights.