Overburden and correlates among caregivers of people with dementia during the COVID-19 pandemic

Authors

Keywords:

Dementia, caregivers, stress, burden, mental health, COVID-19.

Abstract

Introduction: The existence of the SARS-CoV-2 coronavirus (COVID-19) represents an unprecedented health problem around the world, including people with dementia, their families and caregivers.

Objectives: To study the characteristics of caregivers and care recipients as well as the burden among caregivers of people with dementia during the COVID-19 pandemic.

Material and Methods: Prospective observational study. The universe comprised 3000 people aged 65 years who were selected by simple random sampling without replacement from the population based study of Aging and Alzheimer's Disease.  Of them, 160 participants from Havana were evaluated at two different moments: in 2016 - 2018 and from October 1 to November 30, 2020.

Results: The caregivers who were evaluated during the pandemic presented higher levels of stress or higher Zarit burden Interview scores (p=0,017) as well as a greater morbidity as measured by the General Health Questionnaire (p<0,0001) in relation to the study conducted in 2016-2018.

Stress among caregivers was associated with the presence and severity of behavioral and psychological symptoms, OR = 1,02 (95 % CI 1.00-1.03); stages of dementia, OR = 1,61 (95 % CI, 1.45-1.76); greater care needs, OR = 1,56 (95 % CI, 1.14-2.77); fear of getting sick from COVID-19, OR = 1,52 (95 % CI, 1.11-4.12); insecurity about the future, OR = 1,26 (95 % CI, 1.04 -2.53) and job abandonment due to care, OR = 1,19 (95 % CI, 1.01-2.12).

Conclusions:  Our findings confirm that there is greater stress and burden among caregivers of people living with dementia during the COVID-19 pandemic and that there is a need to achieve coordinated actions in the national health system strategies aimed at supporting people with dementia and caregivers.

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Author Biographies

Milagros A. Guerra Hernández, Sanatorio “San Juan de Dios”. La Habana.


 

Elaine Hernández Ulloa, Universidad de Ciencias Médicas de La Habana, Facultad de Ciencias Médicas “Finlay-Albarrán”. La Habana.


 

Rebeca Carida Alfonso Chomat, Universidad de Ciencias Médicas de La Habana, Facultad de Ciencias Médicas “Finlay-Albarrán”. La Habana.


 

 

References

1. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet [Internet]. 2020 Jul [Citado 30/11/2020];396(10248):413-446. Disponible en: https://doi.org/10.1016/S0140-6736(20)30367-6

2. Zissimopoulos J, Crimmins E , Clair P. The Value of Delaying Alzheimer’s Disease Onset. Forum for Health Economics and Policy. 2015; 18 (1): 25-39.

3. Zarit SH, Globble A, Zarit JM. Subjective burden of husband and wives as caregivers: a longitudinal study. Gerontologist. 1986; 26 (3): 260-6.

4. Global Ageing Network. Elder Care Providers & COVID-19: Cross-Cultural Perspectives [Internet]. Washington: Global Ageing Network; 2020 [Citado 30/11/2020]. Disponible en: https://globalageing.org/wp-content/uploads/2021/02/Global-Ageing-Network-COVID-19-Research-Report.pdf

5. Zhu N, Zhang D, Wang W. A novel coronavirus from patients with pneumonia in China, 2019. N Engl J Med. 2020; 382: 727-33.

6. Ministerio de Salud Pública.Coronavirus en Cuba [Internet]. La Habana: MINSAP; 2020 [Citado 30/11/2020]. Disponible en: (https://salud.msp.gob.cu/

7. Llibre Guerra JJ, Jiménez Velázquez IZ, Llibre Rodriguez JJ, Acosta D. The impact of COVID-19 on Mental Health in the Hispanic Caribbean Region. International Psychogeriatric [Internet]. 2020 [Citado 30/11/2020];32(10):1143-6. Disponible en: http://doi.org/10.1017/S1041610216000831

8. Ibanez A, Santamaria Garcia H, Guerrero Barragan A. The impact of SARS-CoV-2 in dementia across Latin America: A call for an urgent regional plan and coordinated response. Alzheimer’s Dement. [Internet]. 2020 [Citado 30/11/2020];6:e12092. Disponible en: https://doi.org/10.1002/trc2.12092

9. Llibre Rodríguez JJ, Valhuerdi A, López AM, Noriega L. Cuba´s Aging and Alzheimer Longitudinal Study. MEDICC Review. 2017; 19 (1): 65-8.

10. Prina M, Acosta D, Acostas I, Guerra M, Llibre Rodríguez JJ, Prince M. Cohort Profile: The 10/66 study. International Journal Epidemiology [Internet].2017 [Citado 30/11/2020];46(2):406-6. Disponible en: http://doi.org/10.1093/ije/dyw056

11. Morris JC. The Clinical Dementia Rating (CDR): current version and scoring rules [see comments]. Neurology. 1993; 43 (11): 2412-4.

12. Hall KS, Hendrie HH, Brittain HM, Norton JA, Rodgers DD, Prince CS, et al. The development of a dementia screeing interview in two distinct languages. International Journal Methods Psychiatric Research. 1993; 3: 1-28.

13. Folstein MF, Folstein SE, McHugh PR. Mini-mental state. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975; 12: 189-98.

14. Kaufer DI, Cummings JL, Ketchel P, Smith V, MacMillan A, Shelley T, et al. Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. J Neuropsychiatry Clin Neurosci. 2000; 12 (2): 233-9.

15. Mari JJ, Williams P. A comparison of the validity of two psychiatric screening questionnaires (GHQ-12 and SRQ-20) in Brazil, using Relative Operating Characteristic (ROC) analysis. Psychol Med. 1985; 15 (3): 651-9.

16. Zarit SH, Reever KE, Bach Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist. 1980; 20: 649-55.

17. Davis KL, Marin DB, Kane R, Patrick D, Peskind ER, Raskind MA, et al. The Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer's disease. Int J Geriatr Psychiatry. 1997; 12 (10): 978-88.

18. Chisholm D, Knapp MRJ, Knudsen HC, Amaddeo F, Gaite L, Van Wijngaarden B. Client Socio-Demographic and Service Receipt Inventory - European Version: development of an instrument for international research. EPSILON study 5. British Journal Psychiatry. 2000; 117 (Suppl.39): s28-s33.

19. Prince M. Care arrangements for people with dementia in developing countries. Int J Geriatr Psychiatry 2004; 19(2): 170-177.

20. Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003; 58 (2): 112-28.

21. Sorensen S, Duberstein P, Gill D, Pinquart M. Dementia care: mental health effects, intervention strategies, and clinical implications. Lancet Neurol. 2006; 5 (11): 961-73.

22. Cheng S, Au A, Losada A, Thompson W, Gallagher Thompson D. Psychological Interventions for Dementia Caregivers: What We Have. Achieved, What We Have Learned. Current Psychiatry Reports. 2019; 21: 59.

23. Oficina Nacional de Estadística e Información. Cuba: Dinámica demográfica. Impacto de los factores demográficos en la pandemia COVID-19 [Internet]. La Habana: ONEI; 2020 [Citado 23/05/2020]. Disponible en: http://www.onei.gob.cu/node/14818

24. Santini Z, Jose P, Cornwell E. Social disconnectedness, perceived isolation, and symptoms of depression and anxiety among older Americans (NSHAP): a longitudinal mediation analysis. Lancet Public Health. 2020; 5: e62-70.

25. Robb CE, de Jager CA, Ahmadi Abhari S, Giannakopoulou P, Udeh Momoh C, McKeand J, et al. Associations of Social Isolation with Anxiety and Depression During the Early COVID-19 Pandemic: A Survey of Older Adults in London, UK. Front Psychiatry [Internet]. 2020 [Citado 30/11/2020];11:591120. Disponible en: http://doi.org/10.3389/fpsyt.2020.591120

26. Díaz Canel Bermúdez M, Núñez Jover J. Gestión gubernamental y ciencia cubana en el enfrentamiento a la COVID-19. Anales de la Academia de Ciencias de Cuba [Internet]. 2020 [Citado 30/11/2020];10(2):[Aprox. 2 p.]. Disponible en: http://www.revistaccuba.cu/index.php/revacc/article/view/881

Published

2021-05-13

How to Cite

1.
Llibre-Rodriguez J de J, Padrón Ramírez I ., Noriega Fernández L, Guerra Hernández MA, Zayas Llerena T, Hernández Ulloa E, et al. Overburden and correlates among caregivers of people with dementia during the COVID-19 pandemic. Rev haban cienc méd [Internet]. 2021 May 13 [cited 2025 Jul. 1];20(4):e3944. Available from: https://revhabanera.sld.cu/index.php/rhab/article/view/3944