Exploring factors contributing to caregiver burden in family caregivers of congolese adults with suspected dementia
Corresponding Author
Jean Ikanga
Department of Rehabilitation Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
Department of Psychiatry, University of Kinshasa and Catholic University of Congo, School of Medicine, Kinshasa, Democratic Republic of Congo
Correspondence
Jean Ikanga, Department of Rehabilitation, Emory University School of Medicine, 1441 Clifton Rd, Atlanta, GA 30322, USA.
Email: [email protected]
Search for more papers by this authorAnny Reyes
Department of Rehabilitation Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
Search for more papers by this authorLiping Zhao
Department of Biostatistics and Bioinformatics, Emory University, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
Search for more papers by this authorTanisha G. Hill-Jarrett
Department of Neurosurgery and Brain Repair, University of South Florida, Tampa, Florida, USA
University of California, Global Brain Health Institute, San Francisco, California, USA
Search for more papers by this authorDustin Hammers
Department of Neurology, Indiana University, Indianapolis, Indiana, USA
Search for more papers by this authorEmmanuel Epenge
Department of Neurology, University of Kinshasa, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorHerve Esambo
Department of Neurology, University of Kinshasa, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorImmaculée Kavugho
Memory Clinic of Kinshasa, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorChristian Esselakoy
Department of Psychology, University of Montreal, Montreal, Quebec, Canada
Search for more papers by this authorGuy Gikelekele
Department of Psychiatry, University of Kinshasa and Catholic University of Congo, School of Medicine, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorNathan Tshengele
Department of Psychiatry, University of Kinshasa and Catholic University of Congo, School of Medicine, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorAlvaro Alonso
Department of Epidemiology, Emory University, School of Public Health, Atlanta, Georgia, USA
Search for more papers by this authorSheria G. Robinson-Lane
Department of Systems, Populations, and Leadership, University of Michigan, School of Nursing, Ann Arbor, Michigan, USA
Search for more papers by this authorCorresponding Author
Jean Ikanga
Department of Rehabilitation Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
Department of Psychiatry, University of Kinshasa and Catholic University of Congo, School of Medicine, Kinshasa, Democratic Republic of Congo
Correspondence
Jean Ikanga, Department of Rehabilitation, Emory University School of Medicine, 1441 Clifton Rd, Atlanta, GA 30322, USA.
Email: [email protected]
Search for more papers by this authorAnny Reyes
Department of Rehabilitation Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
Search for more papers by this authorLiping Zhao
Department of Biostatistics and Bioinformatics, Emory University, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
Search for more papers by this authorTanisha G. Hill-Jarrett
Department of Neurosurgery and Brain Repair, University of South Florida, Tampa, Florida, USA
University of California, Global Brain Health Institute, San Francisco, California, USA
Search for more papers by this authorDustin Hammers
Department of Neurology, Indiana University, Indianapolis, Indiana, USA
Search for more papers by this authorEmmanuel Epenge
Department of Neurology, University of Kinshasa, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorHerve Esambo
Department of Neurology, University of Kinshasa, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorImmaculée Kavugho
Memory Clinic of Kinshasa, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorChristian Esselakoy
Department of Psychology, University of Montreal, Montreal, Quebec, Canada
Search for more papers by this authorGuy Gikelekele
Department of Psychiatry, University of Kinshasa and Catholic University of Congo, School of Medicine, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorNathan Tshengele
Department of Psychiatry, University of Kinshasa and Catholic University of Congo, School of Medicine, Kinshasa, Democratic Republic of Congo
Search for more papers by this authorAlvaro Alonso
Department of Epidemiology, Emory University, School of Public Health, Atlanta, Georgia, USA
Search for more papers by this authorSheria G. Robinson-Lane
Department of Systems, Populations, and Leadership, University of Michigan, School of Nursing, Ann Arbor, Michigan, USA
Search for more papers by this authorAbstract
Introduction
Predicting caregiver burden in individuals with suspected dementia – is critical due to the debilitating nature of these disorders and need for caregiver support. While some examination of the factors affecting burden has been undertaken in Sub-Saharan Africa, each country presents with its own unique challenges and obstacles. This pilot study investigates predictors of caregiver burden in family caregivers of individuals with suspected dementia living in the Democratic Republic of the Congo (DRC).
Methods
Linear and multiple regression analyses were conducted to explore factors associated with caregiver burden in 30 patient-caregiver dyads with the Zarit Burden Interview (ZBI) for caregiver burden evaluation. Cognitive impairments of patients were assessed using the Community Screening Instrument for Dementia, Alzheimer's Questionnaire (AQ), the African Neuropsychology Battery, and the Neuropsychiatric Symptoms Inventory (NPI).
Results
Average caregiver burden on the ZBI was 36.1 (SD = 14.6; range = 12–58). Greater impairments in patient cognition (orientation, visuospatial, memory, executive functioning), fragility, and neuropsychiatric symptoms (delirium, agitation, depression) were predictive of caregiver burden. After controlling for AQ scores and caregiver gender, greater symptoms of depression, and worse performances on verbal memory and problem solving were associated with greater caregiver burden.
Conclusion
Worsening patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. These findings are consistent with the prior literature. Future studies may wish to explore supportive factors and caregiver specific characteristics that buffer against perceived burden.
CONFLICT OF INTEREST STATEMENT
Authors have no conflicts.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
REFERENCES
- 1Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980; 20(6): 649-655. https://doi.org/10.1093/geront/20.6.649
- 2Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatr. 2004; 12(3): 240-249. https://doi.org/10.1097/00019442-200405000-00002
- 3Conde-Sala JL, Garre-Olmo J, Turro-Garriga O, Vilalta-Franch J, Lopez-Pousa S. Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: an exploratory comparative design. Int J Nurs Stud. 2010; 47(10): 1262-1273. https://doi.org/10.1016/j.ijnurstu.2010.03.001
- 4Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990; 30(5): 583-594. https://doi.org/10.1093/geront/30.5.583
- 5Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008; 20: 423-428. https://doi.org/10.1111/j.1745-7599.2008.00342.x
- 6Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014; 311(10): 1052-1060. https://doi.org/10.1001/jama.2014.304
- 7Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015; 62(3): 340-350. https://doi.org/10.1111/inr.12194
- 8Adams B, Aranda MP, Kemp B, Takagi K. Ethnic and gender differences in distress among Anglo American, African American, Japanese American, and Mexican American spousal caregivers of persons with dementia. J Clin Geropsychol. 2002; 8(4): 279-301. https://doi.org/10.1023/a:1019627323558
10.1023/A:1019627323558 Google Scholar
- 9Pinquart M, Sorensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005; 45(1): 90-106. https://doi.org/10.1093/geront/45.1.90
- 10del Pino-Casado R, Millan-Cobo MD, Palomino-Moral PA, Frias-Osuna A. Cultural correlates of burden in primary caregivers of older relatives: a cross-sectional study. J Nurs Scholarsh. 2014; 46(3): 176-186. https://doi.org/10.1111/jnu.12070
- 11Boutoleau-Bretonnière C, Vercelletto M, Volteau C, Renou P, Lamy E. Zarit burden inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dementia Geriatric Cognit Disord. 2008; 25(3): 272-277. https://doi.org/10.1159/000117394
- 12De Vugt ME, Riedijk SR, Aalten P, Tibben A, van Swieten JC, Verhey FR. Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer’s disease and frontotemporal dementia. Dementia Geriatric Cognit Disord. 2006; 22(1): 35-41. https://doi.org/10.1159/000093102
- 13Gallagher D, Ni Mhaolain A, Crosby L, et al. Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers. Aging Ment Health. 2011; 15(6): 663-670. https://doi.org/10.1080/13607863.2011.562179
- 14Connors MH, Seeher K, Teixeira-Pinto A, Woodward M, Ames D, Brodaty H. Dementia and caregiver burden: a three-year longitudinal study. Int J Geriatr Psychiatr. 2020; 35(2): 250-258. https://doi.org/10.1002/gps.5244
- 15Davis JD, Tremont G. Impact of frontal systems behavioral functioning in dementia on caregiver burden. J neuropsychiatry Clin Neurosci. 2007; 19(1): 43-49. https://doi.org/10.1176/jnp.2007.19.1.43
- 16Paddick SM, Kisoli A, Longdon A, et al. The prevalence and burden of behavioural and psychological symptoms of dementia in rural Tanzania. Int J Geriatr Psychiatr. 2015; 30(8): 815-823. https://doi.org/10.1002/gps.4218
- 17Dotchin C, Paddick S.-M, Longdon A, et al. A comparison of caregiver burden in older persons and persons with Parkinson's disease or dementia in sub-Saharan Africa. Int Psychogeriatr. 2014; 26(4): 687-692. https://doi.org/10.1017/s104161021300255x
- 18Baiyewu O, Smith-Gamble V, Akinbiyi A, et al. Behavioral and caregiver reaction of dementia as measured by the neuropsychiatric inventory in Nigerian community residents. Int Psychogeriatr. 2003; 15(4): 399-409. https://doi.org/10.1017/s1041610203009645
- 19Yakubu YA, Schutte DW. Caregiver attributes and socio-demographic determinants of caregiving burden in selected low-income communities in cape town, South Africa. J Compassionate Health Care. 2018; 5: 1-10. https://doi.org/10.1186/s40639-018-0046-6
10.1186/s40639-018-0046-6 Google Scholar
- 20Sanuade OA, Boatemaa S. Caregiver profiles and determinants of caregiving burden in Ghana. Publ Health. 2015; 129: 941-947. https://doi.org/10.1016/j.puhe.2015.05.016
- 21Ainamani HE, Alele PE, Rukundo GZ, et al. Caring for people with dementia in rural Uganda: qualitative study of caregiving burden experienced by informal and formal caregivers. J Global Health Reports. 2020; 4. https://doi.org/10.29392/001c.12848
- 22Wang J, Xiao LD, He GP, De Bellis A. Family caregiver challenges in dementia care in a country with undeveloped dementia services. J Adv Nurs. 2014; 70(6): 1369-1380. https://doi.org/10.1111/jan.12299
- 23 Organization WH. Towards Long-Term Care Systems in Sub-Saharan Africa; 2017.
- 24Guerchet M, M’belesso P, Mouanga AM, et al. Prevalence of dementia in elderly living in two cities of Central Africa: the EDAC survey. Dementia and geriatric cognitive disorders. Dementia Geriatr Cognit Disord. 2010; 30(3): 261-268. https://doi.org/10.1159/000320247
- 25Hall KS, Gao S, Emsley CL, Ogunniyi AO, Morgan O, Hendrie HC. Community screening interview for dementia (CSI ‘D’); performance in five disparate study sites. Int J Geriatr Psychiatr. 2000; 15(6): 521-531. https://doi.org/10.1002/1099-1166(200006)15:6<521::aid-gps182>3.0.co;2-f
- 26Prince M, Acosta D, Chiu H, Scazufca M, Varghese M, Group DR. Dementia diagnosis in developing countries: a cross-cultural validation study. Lancet. 2003; 361(9361): 909-917. https://doi.org/10.1016/s0140-6736(03)12772-9
- 27Chételat G. Multimodal neuroimaging in Alzheimer’s disease: early diagnosis, physiopathological mechanisms, and impact of lifestyle. J Alzheim Dis. 2018; 64(s1): S199-S211. https://doi.org/10.3233/jad-179920
- 28Sabbagh MN, Malek-Ahmadi M, Kataria R, et al. The Alzheimer's questionnaire: a proof of concept study for a new informant-based dementia assessment. J Alzheim Dis. 2010; 22(3): 1015-1021. https://doi.org/10.3233/jad-2010-101185
- 29Ikanga J, Braggs P, Howard C, Stringer A. African enculturation and performance on the African neuropsychological battery. Arch Clin Neuropsychol. 2019; 34(6): 858. https://doi.org/10.1093/arclin/acz035.26
- 30Ikanga J, Basterfield C, Taiwo Z, et al. The Reliability of the African Neuropsychology Battery in Persons of African Descent. Archives of Clinical Neuropsychology; 2022.
10.1093/arclin/acac003 Google Scholar
- 31Sheikh JI, Yesavage JA. Geriatric Depression Scale (GDS): recent evidence and development of a shorter version. Clin Gerontol J Aging Ment Health. 1986.
- 32Blazer DG. Depression in late life: review and commentary. Focus. 2009; 7(1): 118-136. https://doi.org/10.1176/foc.7.1.foc118
10.1176/foc.7.1.foc118 Google Scholar
- 33Zhang C, Zhang H, Zhao M, et al. Psychometric properties and modification of the 15-item geriatric depression scale among Chinese oldest-old and centenarians: a mixed-methods study. BMC Geriatr. 2022; 22: 1-13. https://doi.org/10.1186/s12877-022-02833-x
- 34Beck AT, Epstein N, Brown G, Steer RA. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol. 1988; 56(6): 893-897. https://doi.org/10.1037/0022-006x.56.6.893
- 35Julian LJ. Measures of anxiety. Arthritis Care Res. 2011; 63(S11): S467-S472. https://doi.org/10.1002/acr.20561
- 36Toledano-Toledano F, Moral de la Rubia J, Domínguez-Guedea MT, et al. Validity and reliability of the beck anxiety inventory (Bai) for family caregivers of children with cancer. Int J Environ Res Publ Health. 2020; 17(21):7765. https://doi.org/10.3390/ijerph17217765
- 37Schoevaerdts D, Biettlot S, Malhomme B, et al. Identification précoce du profil gériatrique en salle d'urgences: présentation de la grille SEGA. Revue de gériatrie. 2004; 29:169.
- 38Amalou L, Chassagne P. Validation d’un outil de repérage de la fragilité gériatrique dans une population communautaire ambulatoire de sujets âges; 2013.
- 39Kaufer DI, Cummings JL, Ketchel P, et al. Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. J neuropsychiatry Clin Neurosci. 2000; 12(2): 233-239. https://doi.org/10.1176/jnp.12.2.233
- 40Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994; 44(12):2308. https://doi.org/10.1212/wnl.44.12.2308
- 41Lange RT, Hopp GA, Kang N. Psychometric properties and factor structure of the Neuropsychiatric Inventory Nursing Home version in an elderly neuropsychiatric population. Int J Geriatr Psychiatr. 2004; 19(5): 440-448. https://doi.org/10.1002/gps.1108
- 42Landfeldt E, Mayhew A, Straub V, Bushby K, Lochmüller H, Lindgren P. Psychometric properties of the Zarit Caregiver Burden Interview administered to caregivers to patients with Duchenne muscular dystrophy: a Rasch analysis. Disabil Rehabil. 2019; 41(8): 966-973. https://doi.org/10.1080/09638288.2017.1416501
- 43Sugimoto T, Ono R, Kimura A, et al. Physical Frailty correlates with behavioral and psychological symptoms of dementia and caregiver burden in Alzheimer's disease. J Clin Psychiatry. 2018; 79(6):8633. https://doi.org/10.4088/jcp.17m11991
- 44Cheng S.-T. Dementia caregiver burden: a research update and critical analysis. Curr Psychiatr Rep. 2017; 19(9): 1-8. https://doi.org/10.1007/s11920-017-0818-2
- 45Pang F, Chow T, Cummings J, et al. Effect of neuropsychiatric symptoms of Alzheimer's disease on Chinese and American caregivers. Int J Geriatr Psychiatr. 2002; 17(1): 29-34. https://doi.org/10.1002/gps.510
- 46Allegri RF, Sarasola D, Serrano CM, et al. Neuropsychiatric symptoms as a predictor of caregiver burden in Alzheimer’s disease. Neuropsychiat Dis Treat. 2006; 2:105.
- 47Kehoua G, Dubreuil C.-M, Ndamba-Bandzouzi B, et al. People with dementia in sub-Saharan Africa: from support to abuse by caregivers: results of EPIDEMCA-FU program in Congo. Dementia Geriatric Cognit Disord extra. 2019; 9(1): 163-175. https://doi.org/10.1159/000489846
- 48Cavayas M, Raffard S, Gély-Nargeot M.-C. Stigmatisation dans la maladie d’Alzheimer, une revue de la question. Geriatrie Psychol Neuropsychiat du Vieillissement. 2012; 10(3): 297-305. https://doi.org/10.1684/pnv.2012.0356
- 49Jekel K, Damian M, Wattmo C, et al. Mild cognitive impairment and deficits in instrumental activities of daily living: a systematic review. Alzheim Res and Ther. 2015; 7: 1-20. https://doi.org/10.1186/s13195-015-0099-0
- 50Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family-caregivers of people with mental illnesses. World J Psychiatr. 2016; 6(1):7. https://doi.org/10.5498/wjp.v6.i1.7
- 51Yee JL, Schulz R. Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist. 2000; 40(2): 147-164. https://doi.org/10.1093/geront/40.2.147
- 52Batsanga GGA, Bilongo J, Mboko Ibara SB, Ampale EG, Mbemba V, et al. Enquête démographique et de santé du Congo (EDSC-II) 2011-2012; 2012.