UNDERSTANDING EMPLOYMENT AND FINANCIAL CHALLENGES OF CARE PARTNERS OF PEOPLE WITH ALZHEIMER'S DISEASE AND OTHER DEMENTIAS: A MULTI-COUNTRY MIXED METHODS STUDY
Author(s)
Tina Cartwright, PhD1, Catherine Loveday, PhD1, Lucy Doyle, MSc1, Jannice Roeser, MSc2, Nikki Bayliss, MA3, Candida Halton, MSc1, Sally Snow, PhD4, Millie McLuskie, MSc4.
1University of Westminster, London, United Kingdom, 2F. Hoffman-La Roche, Basel, Switzerland, 3Alzheimer's Disease International, London, United Kingdom, 4Studio Health, London, United Kingdom.
1University of Westminster, London, United Kingdom, 2F. Hoffman-La Roche, Basel, Switzerland, 3Alzheimer's Disease International, London, United Kingdom, 4Studio Health, London, United Kingdom.
OBJECTIVES: Approximately half of global dementia care costs are attributable to care provided by informal care partners, calculated as lost income or costs of equivalent professional care. In partnership with Alzheimer’s Disease International (ADI) and Roche, this mixed-methods study explored care partner burden, wellbeing and support needs.
METHODS: Care partners were recruited through ADI member organisations in the US, UK and Brazil, and research portals in the US and UK. Data were collected between April 2022 and March 2023 via an online survey (N=452), and interviews of a subsample of participants (n=30). Statistical analysis of survey data investigated care burden (time-dependence), impact on employment, and financial support needs. Content analysis of open text responses and interviews explored employment and financial challenges.
RESULTS: Survey respondents were 81.4% female, mean age 56.18 years, 68.0% cared for a parent, 52.9% were employed. Mean care burden score was 11.96 (SD=5.47), 71.7% reported impact on employment due to caregiving (22.5% reduced hours, 19.3% stopped working), and 71.8% reported having financial support needs. Open text responses revealed differing impacts on work: some reported reduced productivity or needing to change work patterns, while others maintained or increased work to access professional care. Interview data from all three countries underscored high care costs, difficulties accessing financial aid, and the emotional impact of financial stress on care partner relationships. Integrated data highlight unique challenges of care partners balancing multiple roles (partner, parent, employee), and the impact on wellbeing across the care dyad.
CONCLUSIONS: This study demonstrates high burden among working-age care partners, illustrating how financial and employment disruptions underscore the hidden societal and economic toll of Alzheimer’s disease and other dementias. These findings contribute to growing evidence for HTA bodies and policy frameworks to look beyond patient-centric clinical outcomes and consider care partner burden in HTA and funding decisions.
METHODS: Care partners were recruited through ADI member organisations in the US, UK and Brazil, and research portals in the US and UK. Data were collected between April 2022 and March 2023 via an online survey (N=452), and interviews of a subsample of participants (n=30). Statistical analysis of survey data investigated care burden (time-dependence), impact on employment, and financial support needs. Content analysis of open text responses and interviews explored employment and financial challenges.
RESULTS: Survey respondents were 81.4% female, mean age 56.18 years, 68.0% cared for a parent, 52.9% were employed. Mean care burden score was 11.96 (SD=5.47), 71.7% reported impact on employment due to caregiving (22.5% reduced hours, 19.3% stopped working), and 71.8% reported having financial support needs. Open text responses revealed differing impacts on work: some reported reduced productivity or needing to change work patterns, while others maintained or increased work to access professional care. Interview data from all three countries underscored high care costs, difficulties accessing financial aid, and the emotional impact of financial stress on care partner relationships. Integrated data highlight unique challenges of care partners balancing multiple roles (partner, parent, employee), and the impact on wellbeing across the care dyad.
CONCLUSIONS: This study demonstrates high burden among working-age care partners, illustrating how financial and employment disruptions underscore the hidden societal and economic toll of Alzheimer’s disease and other dementias. These findings contribute to growing evidence for HTA bodies and policy frameworks to look beyond patient-centric clinical outcomes and consider care partner burden in HTA and funding decisions.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
EE356
Topic
Economic Evaluation
Topic Subcategory
Work & Home Productivity - Indirect Costs
Disease
Geriatrics, Neurological Disorders