Dr. Ernest Gonzales Provides Testimony on Behavioral and Social Sciences Research Agenda for Alzheimer's Disease and Related Dementias

On August 14, 2019, Assistant Professor Ernest Gonzales presented testimony to a committee appointed by The National Academies of Sciences, Engineering, and Medicine (NASEM) Division of Behavioral and Social Sciences and Education to develop a behavioral and social sciences research agenda for the next decade on Alzheimer's Disease and related dementias (ADRD).

Dr. Gonzales, the Co-Lead of the Grand Challenges for Social Work's Advance Long, Healthy, and Productive Lives challenge, focused his remarks on the economic and health burdens often experienced by informal caregivers of those with ADRD. The testimony, which he co-authored with NYU Silver PhD student Cliff Whetung, and MSW students Rachel Krutchen and Andrew Schlessinger, proposed three research questions regarding ADRD caregivers that the committee should address.

The full testimony can be found below:


With the expected increase in Alzheimer’s disease and related dementias (ADRD), there will be a greater need for individuals to provide care to family members and to work longer. Extending employment into later life has become the national mantra among policymakers given extended longevity, shortfalls of retirement income, policies that incentivize extended employment in later life, and the absence of a robust and comprehensive system for long-term services and supports (White House Conference on Aging, 2015; Munnell & Sass, 2008).

While research in this area is complex, there is evidence to suggest informal caregivers are more likely to be forced into retirement (Szinovacz & Davey, 2005; Pavalko & Artis, 1997) and retire at earlier ages (Clarkberg & Moen, 2001; Dentinger & Clarkberg, 2002). Furthermore, informal caregiving is a significant barrier to returning-to-work after retirement. Survival analyses of 8,334 older adults in the Health and Retirement Study (1998-2008, average age was 74) revealed that when compared to non-caregivers, helping a spouse with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) reduced the odds of returning-to-work in the subsequent wave by 78% and 55%, respectively, while controlling for economic, health, and household covariates (Gonzales, Lee & Brown, 2015). Spousal caregivers face great challenges to returning-to-work after formal retirement, particularly as the health of their partner worsens.

This body of research suggests caregivers are forced into retirement and remain retired due to the personal, private, and demanding nature of caring for a spouse, especially for partners who have difficulty with the most essential aspects of living such as eating, bathing, dressing, and getting out of bed. Consequently, caregivers are at a heightened risk of living in poverty in later life given a weaker relationship with the paid labor force and an uneven presence of federal, state and workplace policies to support caregivers (Greenfield, 2013; Lee, Tang, Kim, & Albert, 2015; MetLife Mature Market Institute, 2011; Morrow-Howell, Gonzales, Harootyan, Lee, & Lindberg, 2017; Wakabayashi & Donato, 2006).


While this body of research has not focused on ADRD caregivers specifically, it is important to:

1. Research how ADRD caregiving is linked with employment, retirement transitions, poverty, and health of the caregiver and care recipient (Gonzales, Matz-Costa, & Morrow-Howell, 2015).

2. Research also needs to explore how caregiving/employment might be particularly burdensome among women, racial and ethnic minorities, individuals with lower levels of education and assets, persons with multimorbidity, and LGBT individuals (Alzheimer’s Association & SAGE, n.d.; Gonzales, Lee, & Harootyan, 2019; Carolan, Gonzales, Lee & Harootyan, 2018; Quiñones, Kaye, Allore, Botoseneanu, & Thielke, 2019; Smith, Cawley, Williams, & mustard, 2019).

3. Finally, what protective factors (e.g., federal, state, and workplace policies and practices; individual and family resources) optimize health and economic wellbeing among the ADRD caregivers and care recipients (Gonzales, Matz-Costa, & Morrow-Howell, 2015)?



Alzheimer’s Association and SAGE (n.d.). Issue brief: LGTB and Dementia. Retrieved on August 14, 2019 from https://www.alz.org/media/Documents/lgbt-dementia-issues-brief.pdf
Carolan, K., Gonzales, E., Lee, K., & Harootyan, B. (2018). Institutional and Individual Factors Affecting Health and Employment among Low-Income Women with Chronic Health ConditionsJournals of Gerontology: Series B, gby149. DOI: 10.1093/geronb/gby149
Clarkberg, M. & Moen, P. (2001). Understanding the time-squeeze: Married couples’ preferred and actual work-hour strategiesAmerican Behavioral Scientist, 44(7), 1115-1136. DOI: 10.1177/0002764201044007005
Dentinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and womenJournal of Family Issues, 23(7), 857-879. DOI: 10.1177/019251302236598
Gonzales, E., Lee, K., & Harootyan, B. (2019). Voices from the field: Ecological factors that promote employment and health among low-income older adults with implications for direct social work practiceClinical Social Work Journal, pp1-12. DOI: 10.1007/s10615-019-00719-x
Gonzales, E., Lee, Y. & Brown, C. (2015). Back to work? Not everyone. Examining the longitudinal relationships between informal caregiving and paid-work after formal retirement. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 72(3), 532-539. DOI: 10.1093/geronb/gbv095
Gonzales, E., Matz-Costa, C. & Morrow-Howell, N. (2015). Increasing opportunities for the productive engagement of older adults: A response to population aging. The Gerontologist, 55(2), 252-261. DOI: 10.1093/geront/gnu176
Greenfield, J. C., (2013). The long-term costs of caring: How caring for an aging parent impacts wealth trajectories of caregivers (Doctoral dissertation). Retrieved from https://openscholarship.wustl.edu/cgi/viewcontent.cgi?article=2108&context=etd
Lee, Y., Tang, F., Kim, K. H., & Albert, S. M. (2015). The vicious cycle of parental caregiving and financial well-being: A longitudinal study of womenJournals of Gerontology: Series B: Psychological Sciences and Social Sciences, 70(3), 425-431. DOI: 10.1093/geronb/gbu001
MetLife Mature Market Institute. (2011). Caregiving costs to working caregivers. Westport, CT: MetLife Mature Market Institute. Retrieved from https://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf
Munnell, A., & Sass, S. A. (2008). Working longer: The solution to the retirement income challenge. Washington, DC: Brookings Institute Press.
Morrow-Howell, N., Gonzales, E., Harootyan, B., Lee, Y. J. & Lindberg, B. (2017). Approaches, policies, and practices to support the productive engagement of older adultsJournal of Gerontological Social Work, 60(3), 193-200, DOI: 10.1080.01634372.2016.1275912
Pavalko, E. K. & Artis, J. E. (1997). Women’s caregiving and paid work: Causal relationships in late midlife. Journals of Gerontology: Series B, 52B(4), S170-S179. DOI: 10.1093/geronb/52b.4.s170
Quiñones, A., Kaye, J., Allore, H., Botosaneanu, A., & Thielke, S. (2019). America’s approach to dementia must remain attentive to multimorbidity and racial/ethnic disparities. Retrieved on August 13, 2019 from https://app.smartsheet.com/b/publish?EQBCT=6278ebbba8594c0381e9f9de9c4e4492
Smith, P. M., Cawley, C., Williams, A., & Mustard, C. (2019). Male/female differences in the impact of caring for elderly relatives on labor market attachment and hours of work: 1997-2015Journals of Gerontology: Series B, gbz026. doi:10.1093/geronb/gbz026
Szinovacz, M. E., & Davey, A. (2005). Predictors of perceptions of involuntary retirementThe Gerontologist, 45(1), 36-47. DOI: 10.1093/geront/45.1.36
Wakabayashi, C., & Donato, K. M. (2006). Does caregiving increase poverty among women in later life? Evidence from the Health and Retirement Survey. Journal of Health and Social Behavior, 47(3), 258-274.
DOI: 10.1177/002214650604700305
White House Conference on Aging (2015). Final Report. Retrieved on August 13, 2019 from https://whitehouseconferenceonaging.gov/2015-whcoa-final-report.pdf

Ernest Gonzales, PhD, MSSW, is an Assistant Professor at New York University, Silver School of Social Work (geg2000@nyu.edu). Rachel Krutchen, Andrew Schlesinger, and Cliff Whetung are graduate students at New York University, Silver School of Social Work. Funding for this study was partially provided by NYU Silver School of Social Work Start-Up Funds, Peter T. Paul Professorship at Boston University, John A. Hartford Foundation Dissertation Fellowship, Chancellor’s Fellowship at Washington University in St. Louis, and NYU Silver SSW Upstream Grant Award (PI: Gonzales).

Gonzales, E., Kruchten, R., Schlesinger, A. & Whetung, C. (2019). Competing demands of caregiving and employment: A need to explore the heightened risk of income insecurity and health among ADRD caregivers. A research brief produced for the Decadal Survey of Behavioral and Social Science Research on ADRD by National Academies’ Division of Behavioral and Social Sciences and Education. New York, NY: NYU Silver, Research Brief 201901.