The Level of Burden among Caregivers of Patients with Alzheimer’s Disease in Saudi Arabia
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Data Collection Tool
2.3. Statistical Analysis
3. Results
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Bloom, D.E.; Luca, D.L. The global demography of aging. In Handbook of the Economics of Population Aging; North-Holland: Bonn, Germany, 2016; pp. 3–56. [Google Scholar] [CrossRef]
- United Nations. World Population Ageing 2020 Highlights: Living Arrangements of Older Persons. 2020. Available online: https://www.un.org/development/desa/pd/sites/www.un.org.development.desa.pd/files/undesa_pd-2020_world_population_ageing_highlights.pdf (accessed on 26 August 2021).
- United Nations. Department of Economic and Social Affairs, Population Division (2019). 2019. Available online: https://population.un.org/wpp/Download/Files/1_Indicators%20 (accessed on 30 August 2021).
- Ministry of Health. Health Days 2020, World Alzheimer’s Day. Ministry of Health. 21 September 2020. Available online: https://www.moh.gov.sa/en/HealthAwareness/healthDay/2020/Pages/HealthDay-2020-09-21.aspx (accessed on 28 August 2021).
- Guerchet, M.; Prince, M.; Prina, M. Numbers of People with Dementia around the World. 2020. Available online: https://www.alzint.org/resource/numbers-of-people-with-dementia-worldwide/ (accessed on 28 August 2021).
- World Health Organization. Dementia a Public Health Priority; World Health Organization: Geneva, Switzerland, 2012; Available online: https://apps.who.int/iris/handle/10665/75263 (accessed on 28 August 2021).
- Ministry of Health. Elderly Health: Alzheimer’s Disease: Definition, Treatment and Guidelines. Ministry of Health. 2017. Available online: https://www.moh.gov.sa/en/HealthAwareness/EducationalContent/Health-of-Older-Persons/Pages/What-Is-Aging.aspx (accessed on 28 August 2021).
- Albugami, M. The demographic characteristics and the risk factors of dementia in Saudi elderly. Am. J. Psychiatry Neurosci. 2018, 6, 1. [Google Scholar] [CrossRef]
- Collins, L.G.; Swartz, K. Caregiver care. Am. Fam. Physician 2011, 83, 1309–1317. Available online: www.aafp.org/afpAmericanFamilyPhysician1309 (accessed on 31 August 2021). [PubMed]
- Alasmee, N.; Hasan, A.A. Primary caregivers experience of anti-psychotic medication: A qualitative study. Arch. Psychiatr. Nurs. 2020, 34, 520–528. [Google Scholar] [CrossRef] [PubMed]
- Wang, J.; Xiao, L.D.; He, G.P.; de Bellis, A. Family caregiver challenges in dementia care in a country with undeveloped dementia services. J. Adv. Nurs. 2014, 70, 1369–1380. [Google Scholar] [CrossRef] [PubMed]
- Ministry of Health. Healthcare Transformation Strategy. 2017. Available online: https://www.moh.gov.sa/en/Ministry/vro/Documents/Healthcare-Transformation-Strategy.pdf (accessed on 12 April 2022).
- Bramboeck, V.; Moeller, K.; Marksteiner, J.; Kaufmann, L. Loneliness and burden perceived by family caregivers of patients with Alzheimer disease. Am. J. Alzheimer’s Dis. Other Dement. 2020, 35, 1533317520917788. [Google Scholar] [CrossRef] [PubMed]
- Alshammari, S.A.; Alzahrani, A.A.; Alabduljabbar, K.A.; Aldaghri, A.A.; Alhusainy, Y.A.; Khan, M.A.; Alshuwaier, R.A.; Kariz, I.N. The burden perceived by informal caregivers of the elderly in Saudi Arabia. J. Fam. Community Med. 2017, 24, 145. [Google Scholar] [CrossRef] [PubMed]
- Ghazwani, E.Y.; Al-Shehri, A.A.; Alghamdi, F.A. Assessment of burden and stress among caregivers of terminally Ill patients in a Saudi University Hospital: A cross-sectional study. Cureus 2021, 13, e14215. [Google Scholar] [CrossRef] [PubMed]
- Khalil, A.; Aladwani, N.; Aljehani, S. Relationship between knowledge, attitude, and burden among Alzheimer’s family care givers in Jeddah, Saudi Arabia. Saudi J. Nurs. Health Care 2020, 3, 167–174. [Google Scholar] [CrossRef]
- Solomon, P.; Jeffrey, W. Coping among family members of persons with serious mental illness. Psychiatr. Serv. 1995, 46, 1156–1160. [Google Scholar] [PubMed]
- Okasha, A. The impact of Arab culture on psychiatric ethics. Arab J. Psych. 2008, 19, 81–99. [Google Scholar]
- Abolfotouh, M.A.; Almutairi, A.F.; Almutairi, Z.; Salam, M.; Alhashem, A.; Adlan, A.A.; Modayfer, O. Attitudes toward mental illness, mentally ill persons, and help-seeking among the Saudi public and sociodemographic correlates. Psychol. Res. Behav. Manag. 2019, 12, 45–54. [Google Scholar] [CrossRef] [PubMed]
- Brodaty, H.; Brodaty, A.H.; Donkin, M. Who Are Informal Caregivers? Family Caregivers of People with Dementia. 2009. Available online: www.dialogues-cns.org (accessed on 31 August 2021).
- Schulz, R.; Beach, S.R.; Friedman, E.M.; Martsolf, G.R.; Rodakowski, J.; James, A.E. Changing structures and processes to support family caregivers of seriously Ill patients. J. Palliat. Med. 2018, 21, S36–S42. [Google Scholar] [CrossRef] [PubMed]
- Algahtani, H.; Shirah, B.; Alhazmi, A.; Alshareef, A.; Bajunaid, M.; Samman, A. Perception and attitude of the general population towards Alzheimer’s disease in Jeddah, Saudi Arabia. Acta Neurol. Belg. 2020, 120, 313–320. [Google Scholar] [CrossRef] [PubMed]
- Bédard, M.; Molloy, D.W.; Squire, L.; Dubois, S.; Lever, J.A. The Zarit Burden Interview: A New Short Version and Screening Version. 2001. Available online: https://academic.oup.com/gerontologist/article/41/5/652/596578 (accessed on 31 August 2021).
- IBM SPSS Statistics for Windows; IBM Corp: Armonk, NY, USA, 2010; Available online: https://www.ibm.com/support/pages/spss-statistics-190-fix-pack-1 (accessed on 12 April 2022).
Characteristics | n (%) |
---|---|
Age | |
18–29 years | 25 (16.89) |
30–40 years | 34 (22.97) |
41–50 years | 45 (30.41) |
51–60 years | 38 (25.68) |
61 or older | 6 (4.00) |
Gender | |
Female | 92 (62.16) |
Male | 56 (37.84) |
Educational level | |
Less than high school | 9 (6.08) |
High school | 28 (18.92) |
Bachelor’s degree | 86 (58.11) |
Postgraduate degree | 25 (16.89) |
Employment Status | |
Employed | 80 (54.05) |
Not Employed | 68 (54.95) |
Marital status | |
Single | 44 (29.73) |
Married | 94 (63.51) |
Divorced/widowed | 10 (6.76) |
Relationship with the Alzheimer’s patient | |
1st-degree relative | 106 (71.62) |
2nd-degree relative | 23 (15.54) |
Informal non-relative | 19 (12.84) |
First time taking care of an Alzheimer’s patient | |
Yes | 126 (85.14) |
No | 22 (14.86) |
Number of hours spent per day taking care of Alzheimer’s patient | |
Less than 2 h | 16 (10.81) |
2–4 h | 40 (27.03) |
More than 4 h | 92 (62.16) |
Length Taking Care of the Alzheimer’s Patient | |
≤3 years | 60 (40.54) |
4–9 years | 64 (43.24) |
≥10 years | 24 (16.22) |
Current province living in in Saudi Arabia | |
Central province | 87 (58.78) |
Eastern province, Northern province, and Others | 14 (9.46) |
Western province and Southern province | 47 (31.76) |
Zarit Burden Interview (ZBI) for Caregiver Burden Assessment | Mean (±SD) |
27.87 (8.79) |
Characteristics | n (%) |
---|---|
Age | |
51–60 | 5 (3.38) |
61–70 | 30 (20.27) |
71–80 | 48 (32.43) |
>80 | 65 (43.92) |
Gender | |
Male | 83 (56.08) |
Female | 65 (43.92) |
Type of Health Establishment | |
Government health facility | 73 (49.32) |
Private health facility | 29 (19.59) |
Both | 31 (20.95) |
Other | 15 (10.14) |
Stage of Alzheimer’s Disease | |
I don’t know | 49 (33.11) |
Yes, first stage | 20 (13.51) |
Yes, second stage | 31 (20.95) |
Yes, last stage | 48 (32.43) |
Time Since Alzheimer’s Disease Diagnosis | |
<5 years | 69 (46.62) |
5–10 years | 61 (41.22) |
>10 years | 18 (12.16) |
Other Chronic Diseases | |
I don’t know | 10 (6.76) |
Yes, he has other chronic diseases | 99 (66.89) |
No, he doesn’t have any other chronic diseases | 39 (26.35) |
Question |
Female n (%) |
Male n (%) | p-Value |
---|---|---|---|
What do you do to overcome the difficulties you encounter while providing care? | |||
I do nothing | 16 (59.26) | 11 (40.74) | 0.36 |
I talk to people who have a similar interest and/or have had previous experience caring for Alzheimer patients | 36 (50.00) | 36 (50.00) | |
Attend courses or take behavioral therapy sessions to learn about Alzheimer’s disease and how to deal with it | 15 (71.43) | 6 (28.57) | |
Other | 16 (57.14) | 12 (42.86) | |
Do you think you have all the resources (including financial, health care, and mental health) that you need as an Alzheimer’s caregiver? | |||
Yes, I own all the resources | 19 (63.33) | 11 (36.67) | 0.86 |
Yes, I have some resources | 52 (60.47) | 34 (39.53) | |
No, I don’t have it | 21 (65.63) | 11 (34.38) | |
What services do you need to improve the quality of your life and that of your relative “Alzheimer’s patient”? | |||
Providing courses or programs on Alzheimer’s disease and how to deal with it | 24 (77.42) | 7 (22.58) | 0.02 * |
Provide behavioral therapy sessions to caregivers | 9 (56.25) | 7 (43.75) | |
Center dedicated to Alzheimer’s patients | 32 (44.44) | 40 (55.56) | |
Providing (medical and health) supplies for Alzheimer’s patients | 18 (37.93) | 11 (37.93) | |
From what source do you receive information about Alzheimer’s disease and how to care for yourself and an Alzheimer’s patient? | |||
Specialized Doctors | 37 (55.22) | 30 (44.78) | 0.96 |
Medical resources | 10 (58.82 | 7 (41.18) | |
Social Media other platforms | 36 (56.25) | 28 (43.75) | |
Often, from whom do you receive support (financial or moral) during your Alzheimer’s care to reduce the burden on you? | |||
Government support | 13 (59.09) | 9 (40.91) | 0.94 |
Community Support | 12 (63.16) | 7 (36.84) | |
Family Support | 67 (62.62) | 40 (37.38) | |
Do you have a desire to enroll in courses to learn more about how to overcome the psychological, financial, and physical burden while caring for an Alzheimer’s patient? | |||
Yes | 69 (62.73) | 41 (37.27) | 0.8 |
No | 23 (60.53) | 15 (39.47) | |
In general, do you feel that you are receiving adequate support for Alzheimer’s care? | |||
Yes | 34 (64.15) | 19 (35.85) | 0.7 |
No | 58 (61.05) | 37 (38.95) |
Question |
Entire Participants n (%) |
Female n (%) |
Male n (%) | p-Value |
---|---|---|---|---|
Can you list the names of all the medications used by the Alzheimer patient you are taking care of? | ||||
No | 107 (72) | 62 (57.94) | 45 (42.06) | 0.46 |
Yes | 41 (28) | 21 (51.22) | 20 (48.78) | |
Do you have sufficient knowledge of the indications for each medication used by the Alzheimer’s patient you are taking care of? | ||||
No | 112 (76) | 64 (57.14) | 48 (42.86) | 0.64 |
Yes | 36 (24) | 19 (52.78) | 17 (47.22) | |
Do you know how the Alzheimer’s patient is supposed to take each of his medications? (In terms of specific dosage, how to use: if it is taken by mouth or by subcutaneous needle, and directions after eating or before) | ||||
No | 124 (84) | 75 (66.48) | 49 (39.52) | 0.01 * |
Yes | 24 (16) | 8 (33.33) | 16 (66.67) | |
Do you know when to give each medication to the Alzheimer’s patient you care for? | ||||
No | 127 (86) | 73 (57.48) | 54 (42.52) | 0.39 |
Yes | 21 (14) | 10 (47.62) | 11 (52.38) | |
Do you know what are the side effects of the medications taken by the Alzheimer’s patient you are taking care of? | ||||
No | 92 (62) | 50 (54.35) | 42 (45.65) | 0.58 |
Yes | 56 (38) | 33 (58.93) | 23 (41.07) | |
Do you know what to do if an Alzheimer’s patient experiences “side effects” from the medications they are taking? | ||||
No | 98 (66) | 54 (55.10) | 44 (44.90) | 0.73 |
Yes | 50 (34) | 29 (58.00) | 21 (42.00) | |
Are you aware of what you do if you forget the scheduled dose for an Alzheimer’s patient’s medication? | ||||
No | 120 (81) | 70 (58.33) | 50 (41.67) | 0.25 |
Yes | 28 (19) | 13 (46.43) | 15 (53.57) |
Question | Crude OR (95% CI) | p-Value | Adjusted OR (95% CI) | p-Value |
---|---|---|---|---|
What do you do to overcome the difficulties you encounter while providing care? | ||||
I do nothing | 0.95 (029–3.04) | 0.93 | 0.96 (0.24–3.69) | 0.95 |
I talk to people who have a similar interest and/or have had previous experience caring for Alzheimer patients | 0.52 (0.20–1.35) | 0.18 | 0.59 (0.19–1.76) | 0.34 |
Attend courses or take behavioral therapy sessions to learn about Alzheimer’s disease and how to deal with it | 1.28 (0.35–4.68) | 0.7 | 1.19 (0.25–5.64) | 0.82 |
Other | Ref. | Ref. | Ref. | Ref. |
Do you think you have all the resources (including financial, health care, and mental health) that you need as an Alzheimer’s caregiver? | ||||
Yes, I own all the resources | 0.16 (0.04–0.53) | <0.01 | 0.53 (0.12–2.36) | 0.41 |
Yes, I have some resources | 0.32 (0.11–0.94) | 0.03 | 0.48 (0.14–1.65) | 0.24 |
No, I don’t have it | Ref. | Ref. | Ref. | Ref. |
What services do you need to improve the quality of your life and that of your relative “Alzheimer’s patient”? | ||||
Providing courses or programs on Alzheimer’s disease and how to deal with it | 0.50 (0.17–1.41) | 0.19 | 0.64 (0.18–2.30 | 0.49 |
Provide behavioral therapy sessions to caregivers | 0.78 (0.22–2.71) | 0.7 | 0.85 (0.18–3.97) | 0.84 |
Center dedicated to Alzheimer’s patients | 1.97 (0.78–4.99) | 0.14 | 2.66 (0.87–8.16) | 0.08 |
Providing (medical and health) supplies for Alzheimer’s patients | Ref. | Ref. | Ref. | Ref. |
From what source do you receive information about Alzheimer’s disease and how to care for yourself and an Alzheimer’s patient? | ||||
Specialized Doctors | 0.30 (0.14–0.65) | <0.01 | 0.40 (0.16–0.98) | 0.04 |
Medical resources | 0.51 (0.16–1.63) | 0.25 | 0.48 (0.12–1.81) | 0.27 |
Social Media and other platforms | Ref. | Ref. | Ref. | Ref. |
Often, from whom do you receive support (financial or moral) during your Alzheimer’s care to reduce the burden on you? | ||||
Government support | 0.89 (0.35–2.28) | 0.82 | 1.66 (0.54–5.02) | 0.36 |
Community Support | 5.28 (1.15–24.04) | 0.03 | 2.80 (0.54–14.31) | 0.21 |
Family Support | Ref. | Ref. | Ref. | Ref. |
Do you have a desire to enroll in courses to learn more about how to overcome the psychological, financial, and physical burden while caring for an Alzheimer’s patient? | ||||
Yes | 1.49 (0.70–3.18) | 0.29 | 1.17 (0.45–3.05) | 0.73 |
No | Ref. | Ref. | Ref. | Ref. |
In general, do you feel that you are receiving adequate support for Alzheimer’s care? | ||||
Yes | 0.23 (0.11–0.47) | <0.01 | 0.29 (0.11–0.73) | <0.01 |
No | Ref. | Ref. | Ref. | Ref. |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Badawoud, A.M.; AlQadheeb, Y.K.; AlZahrani, S.S.; AlGhamdi, R.A.; Alanazi, E.A.; AlFozan, S.M.; AlJafer, N.S.; Asiri, I.M.; Alotaibi, F.M. The Level of Burden among Caregivers of Patients with Alzheimer’s Disease in Saudi Arabia. Int. J. Environ. Res. Public Health 2023, 20, 2864. https://doi.org/10.3390/ijerph20042864
Badawoud AM, AlQadheeb YK, AlZahrani SS, AlGhamdi RA, Alanazi EA, AlFozan SM, AlJafer NS, Asiri IM, Alotaibi FM. The Level of Burden among Caregivers of Patients with Alzheimer’s Disease in Saudi Arabia. International Journal of Environmental Research and Public Health. 2023; 20(4):2864. https://doi.org/10.3390/ijerph20042864
Chicago/Turabian StyleBadawoud, Amal Mohammad., Yasmin K. AlQadheeb, Shahad S. AlZahrani, Razan A. AlGhamdi, Elaf A. Alanazi, Sarah M. AlFozan, Norah S. AlJafer, Ibrahim M. Asiri, and Fawaz M. Alotaibi. 2023. "The Level of Burden among Caregivers of Patients with Alzheimer’s Disease in Saudi Arabia" International Journal of Environmental Research and Public Health 20, no. 4: 2864. https://doi.org/10.3390/ijerph20042864