Abstract
Rapid population aging is a global phenomenon that is also accompanied by increased disability rates. These increased disability rates pose social and economic costs to individuals, families, and healthcare systems. This feature will provide an overview of the current research and knowledge regarding aging, disability, and caregiving and focus primarily on cognitive and physical disability. We begin with a brief overview of aging, cognitive and physical disability, and caregiving rates. We then review the literature on aging, disability, and caregiving, focused specifically on global research on caregiving for cognitive disability. While research has primarily focused on ameliorating the negative effects of caregiving, little attention has been paid to reinforcing systems of care that are collaborative, disability rights centered, systemic, and culturally effective. By acknowledging and building on the strengths of existing successful systems, researchers may be able to extrapolate Alzheimer’s and dementia-related caregiving resources onto caregiving for other degenerative conditions, even those involving younger individuals and their caregivers.
References
Alzheimer’s Association. (2023). 2023 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 19(4), 1598–1695. https://doi.org/10.1002/alz/13016
Arstein-Kerslake, A., Watson, J., Browning, M., & Blanck, P. (2017). Future directions in supported decision-making. Disability Studies Quarterly, 31(1). https://doi.org/10.18061/dsq.v37i1.5070
Borelli, W. V., Augustin, M. C., de Oliveira, P. B. F., Reggiani, L. C., Bandeira-de-Mello, R. G., Schumacher-Schuh, A. F., Chaves, M. L. F., & Castilhos, R. M. (2021). Neuropsychiatric symptoms in patients with dementia associated with increased psychological distress in caregivers during the COVID-19 pandemic. Journal of Alzheimer’s Disease, 80(4), 1705–1712.
Cohen, G., Russo, M. J., Campos, J. A., & Allegri, R. F. (2020). Living with dementia: Increased level of caregiver stress in times of COVID-19. International Psychogeriatrics, 32(11), 1377–1381.
Goyal, D., Hunt, X., Kuper, H., Shakespeare, T., & Banks, L. M. (2023). Impact of the COVID-19 pandemic on people with disabilities and implications for health services research. Journal of Health Services Research & Policy, 28(2), 77–79. https://doi.org/10.1177/13558196231160047
Grossman, B. R., & Webb, C. E. (2016). Family support in late life: A review of the literature on aging, disability, and family caregiving. Journal of Family Social Work, 19(4), 348–395.
Hinton, L., Tran, D., Nguyen, T.-N., Ho, J., & Gitlin, L. (2019). Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: A scoping review. BMJ Global Health, 4(6), e001830. https://doi.org/10.1136/bmjgh-2019-001830
Ibáñez, A., Pina-Escudero, S. D., Possin, K. L., Quiroz, Y. T., Peres, F. A., Slachevsky, A., Sosa, A. L., Brucki, S. M., & Miller, B. L. (2021). Dementia caregiving across Latin America and the Caribbean and brain health diplomacy. The Lancet Healthy Longevity, 2(4), e222–e231.
Kane, T., Hammad, S. H., Islam, N., Al-Wattary, N., Clark, J., & Daher-Nashif, S. (2021). Dementia caregiving in the Middle East and North Africa: A scoping review. Transcultural Psychiatry, 58(6), 844–858.
Ma, K. P. K., & Saw, A. (2020). An international systematic review of dementia caregiving interventions for Chinese families. International Journal of Geriatric Psychiatry, 35(11), 1263–1284.
Mok, V. C., Pendlebury, S., Wong, A., Alladi, S., Au, L., Bath, P. M., Biessels, G. J., Chen, C., Cordonnier, C., & Dichgans, M. (2020). Tackling challenges in care of Alzheimer’s disease and other dementias amid the COVID-19 pandemic, now and in the future. Alzheimer’s & Dementia, 16(11), 1571–1581.
Nguyen, T., & Li, X. (2020). Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature. Dementia, 19(2), 148–181.
Peterson, A., Karlawish, J., & Largent, E. (2021). Supported decision-making with people at the margins of autonomy. The American Journal of Bioethics, 21(11), 4–18. https://doi.org/10.1080/15265161.2020.1863507
Rajagopalan, J., Arshad, F., Hoskeri, R. M., Nair, V. S., Hurzuk, S., Annam, H., Varghese, F., Br, R., Dhiren, S. R., Ganeshbhai, P. V., Kammammettu, C., Komaravolu, S., Thomas, P. T., Comas-Herrera, A., & Alladi, S. (2022). Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: A mixed-methods study. Dementia, 21(1), 214–235. https://doi.org/10.1177/14713012211035371
Sun, F., Opur, F. A., Kim, H. N., Prieto, L. R., & Conyers, C. (2022). Dementia-friendly initiatives within the context of COVID-19 pandemic: Challenges and strategies perceived by service professional stakeholders from the USA and China. Dementia (London), 21(5), 1714–1733. https://doi.org/10.1177/14713012221089416
Tjin, A., Troy, C., Vinarti, R. A., Banerjee, D., Goodwin, A., Yeo, S., Saha, S., Krishna, M., Goswami, S. P., Chen, Y. S., Leroi, I., & O’Sullivan, R. (2022). Role strain and COVID-era burden among South Asian caregivers of individuals with brain health conditions and disabilities. Alzheimer’s & Dementia, 18(S8), e064197. https://doi.org/10.1002/alz.064197
UN. (2017a). Global action plan on the public health response to dementia 2017–2025. https://iris.who.int/bitstream/handle/10665/259615/?sequence=1
UN. (2017b). World population prospects: The 2017 revision, key findings, and advance tables. https://esa.un.org/unpd/wpp/Publications/Files/WPP2017_KeyFindings.pdf
UN. (2022). Caregiving in an ageing world. https://www.un.org/development/desa/dspd/2022/11/caregiving-ageing-world/
WHO. (2017). Global action plan on the public health response to dementia 2017–2025. https://iris.who.int/bitstream/handle/10665/259615/?sequence=1
WHO. (2023). Disability fact sheet. https://www.who.int/news-room/fact-sheets/detail/disability-and-health#:~:text=An%20estimated%201.3%20billion%20people,1%20in%206%20of%20us
Young, I. M. (2001). Asymmetrical reciprocity: On moral respect, wonder, and enlarged thought. In R. Beiner & J. Nedelsky (Eds.), Judgment, imagination, and politics: Themes from Kant and Arendt (pp. 205–228). Rowman and Littlefield.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Section Editor information
Rights and permissions
Copyright information
© 2024 The Author(s), under exclusive licence to Springer Nature Switzerland AG
About this entry
Cite this entry
Rote, S., Kendrick, J., Markides, K. (2024). Aging, Disability, and Caregiving. In: Bennett, G., Goodall, E. (eds) The Palgrave Encyclopedia of Disability. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-40858-8_84-1
Download citation
DOI: https://doi.org/10.1007/978-3-031-40858-8_84-1
Received:
Accepted:
Published:
Publisher Name: Palgrave Macmillan, Cham
Print ISBN: 978-3-031-40858-8
Online ISBN: 978-3-031-40858-8
eBook Packages: Springer Reference Behavioral Science and PsychologyReference Module Humanities and Social SciencesReference Module Business, Economics and Social Sciences