Filiz Adana  ( Adnan Menderes University, Faculty of Nursing, Public Health Nursing, Aydin, Turkey. )
Safiye Ozvurmaz  ( Department of Public Health Nursing, Aydin Adnan Menderes University, Aydin, Turkey. )
Aliye Mandiracioglu  ( Department of Public Health, Ege University, Izmir, Turkey. )

Objective: To determine the burden on the caregivers of dementia patients and the factors affecting the perception of it.

 

Methods: The current systematic review was done in Turkey and comprised a search between October 2019 and March 2020 on Turkish and English indices, including the Turkish Academic Network and Information Center database, Web of Science, PubMed, Education Resources Information Centre, Medline, SocINDEX, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Google Scholar, Ulusal Tez Merkezi, Dergipark and Turk Medline. The key words used were ‘Demans’, ‘alzheimer’, ‘bakım verenler’, ‘hastalık yükü’, ‘dementia’, ‘alzheimer's’, ‘caregivers’ and ‘burden of illness’. Studies included were those having been conducted from 2010 to 2019 and which used the Personal Information Form, the Zarit Caregiver Burden Scale and the Caregiver Burden Inventory.

 

Results:  Of the 4,182 studies initially found, 502(12%) were accessed using Turkish key words, and 3,680(88%) using English key words. Overall, 16(0.38%) studies met the inclusion criteria and were reviewed. There were 2,060 caregivers and 414 patients in these studies. A high number of variables affected caregiver burden. Patient-related variables reported in multiple studies included time spent on caregiving, dementia stage, patient's age and level of patient's dependence.

 

Conclusion: The most frequently reported caregiver-related variables which increased caregiver burden were being female, younger age, being unemployed, older age, lower education level.

 

Keywords: Dementia, Alzheimer's, Caregivers, Burden of illness. (JPMA 72:108; 2022)

 

DOI: https://doi.org/10.47391/JPMA.2168

 

Introduction

 

Dementia is a progressive disease which starts slowly and gradually gets worse. It is an important public health issue. Based on the changes in daily life activities, the disease presentation can vary from age-related forgetfulness, and from mild cognitive impairment to mild, moderate and severe dementia stages. There are 44.4 million dementia patients in the world. Every year 7.7 million patients are added to this figure and the dementia population is expected to be 75.6 million in 2030 and 135.5 million in 2050.^1,2 In Turkey, the incidence of Alzheimer's dementia is 0.4% between the ages of 65 and 69 years, while it reaches 10% at the age of 90. Its prevalence is 2% between the ages of 65 and 69 years, while it reaches 25% at the age of 90. ³ Dementia patients are usually cared for in their homes by their spouses and immediate family members. Studies show that it can be demanding to provide care to dementia patients, and caregivers' health is adversely affected due to various reasons, including caregiver burden, burnout, social isolation, economic problems etc. Many studies found that stress related diseases, like hypertension and stomach disorders, and mental health problems were higher in caregivers of Alzheimer's patients than those who were not caregivers. ^4-9

Patient's level of dependency, disease stage and duration, cognitive and behavioural symptoms and caregiver burnout are factors affecting the perception of burden by the caregivers. To evaluate caregiver burden for chronic diseases, such as dementia, the Caregiver Burden Scale (CBS) was developed in 1980 and the Turkish version of the scale was developed in 2006. ¹⁰ The Caregivers Burden Inventory (CBI) was developed in Canada in 1989, and the Turkish version was developed in 2004. ¹¹ Research on determining caregiver burden is an ongoing process. There are sufficient studies on the subject and it is essential that a systematic review is done to avoid redundant

 research.^12-19

The current systematic review was planned to determine the variables that can affect caregiver burden of dementia patients, and to facilitate the introduction of specific measures for the caregivers.

 

Methods

 

The current systematic review was done in Turkey and comprised a search between October 2019 and March 2020 on Turkish and English indexes, including the Turkish Academic Network and Information Centre (ULAKBİM) database, Web of Science, PubMed, Education Resources Information Centre (ERIC), Medline, SocINDEX, Cumulative Index to Nursing and Allied Health Literature  (CINAHL), PsycINFO, Google Scholar, Ulusal Tez Merkezi, Dergipark and Turk Medline. The key words used were ‘Demans’, ‘alzheimer’, ‘bakım verenler’, ‘hastalık yükü’, ‘dementia’, ‘alzheimer's’, ‘caregivers’ and ‘burden of illness’. Further search was done using alternative English words,  ‘Dementia disease’, ‘dementia patients’, ‘Alzheimer’s disease’, ‘Alzheimer’s patients’, ‘caregiver’, ‘caregiving’, ‘primary caregiver’, ‘family caregiver’, ‘family’, ‘patient relatives’, ‘caregiver burden’, ‘care burden’, ‘burden’, ‘burden of care’, ‘Turkey’, and alternative Turkish words ‘Demans hastalığı’, ‘demans hastaları’, ‘alzheimer hastalığı’, ‘alzheimer hastaları’, ‘bakım verici’, ‘bakıcı’, ‘bakım verme’, ‘birincil bakım verici’, ‘aile bakım vericisi’, ‘aile’, ‘hasta yakını’, ‘bakım verici yükü’, ‘bakım yükü’ and ‘yük, bakımın yükü’.The studies included were cross-sectional studies conducted in Turkey between 2009 and 2018 and published from 2010 to 2019 with caregivers of dementia patients and compared caregiver burden and other characteristics of caregivers using personal information forms (PIFs) as well as the CBS and CBI tools, and of which full text could be accessed. References of the studies included were used to find other studies. Interventional studies, methodological studies, traditional reviews, systematic reviews and meta-analyses were excluded.

Two researchers independently identified and selected the studies, and any disagreement was discussed to reach consensus.

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline were used to develop the review framework. ²⁰ The eligibility criteria for the studies to be included was defined by the Patient-Intervention-Comparison-Outcomes-Study design (PICOS) method, according to which, P = caregivers of dementia patients; I = no intervention; C = comparison of personal characteristics and caregiver burden; O = caregiver burden, related variables; and S = descriptive, cross-sectional, observational. ²¹

Methodological quality of the studies was evaluated by one researcher and checked by the other. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist comprising 22 items was used to evaluate the quality of the studies. ²²

Other than PIFs, the Turkish version of CBS, which is a valid and reliable tool, ¹⁰ was used. Also, CBI11 was used to measure the effect of caregiving on the caregivers.

Since the collected data was not homogenous, no meta-analysis could be performed.

 

Results

 

Of the 4,182 studies initially found, 502(12%) were accessed using Turkish key words, and 3,680(88%) using English key words. Overall, 16(0.38%) studies met the inclusion criteria and were reviewed (Figure). Mean STROBE score of the studies was 15.73±2.47 (range: 12-20).

 

 

Of the 16 studies, 12(75%%) were articles and 4(25%) were theses. Besides, 6(37.5%) were in English and 10(62.5%) were in Turkish language. The mean time between data collection and publication of the studies was 1.69±1.178” years. However, 3(18.75%) studies did not report the years of data-collection. There were 2060 caregivers and 414 patients in these studies. The studies were conducted in 5 different cities in 4 different regions of Turkey:  Aegean 2(12.5%), Marmara 4(49%), Central Anatolia 1(6.25%) and Black Sea 3(18.75%) regions. However, 6(37.5%) studies did not mention the location/city in which the studies were conducted. Research data was collected in hospitals and associations and the sampling size ranged between 82 and 610 (Table 1).

 

 

Socio-demographic data of both the patients and the caregivers in the 16 studies was tabulated (Figure 2). Patient-related variables reported in multiple studies included time spent on caregiving, dementia stage, patient's age and level of patient's dependence (Table 2). A high number of variables affected caregiver burden (Table 2).

 

 

 

 

Discussion

 

It is possible to reach to some general conclusions based on the findings of the studies included in the current systematic review about the burden on the caregivers of dementia patients and its related factors.  Many variables which affect caregiver burden were found in the review. Among patient-related variables, time spent on caregiving, dementia stage, patient's age, and level of patient's dependence were reported in multiple studies (Table 1).

Based on our review, reported that time/hours spent on care increased the burden perceived by the

caregivers.^{16 23-26}There are studies showing that the length of the care period increases the burden of care.^18,19,27,28 The relationship between caregiver burden and time spent on care found in the studies conducted in Turkey and included in our systematic review shows similarities with international studies.

Also, studies in the current review reported that older age in dementia patients, increased caregiver burden.^25,26,29,30 which is also reported by other studies. ^15,17,28 This is thought to be caused by the presence of other concomitant chronic diseases, and decreasing physical fitness with age.

Some studies in the review reported that advancing stage of dementia increased caregiver burden.^24,25,29,31 This was similar to studies in literature.^28,32-35 Fong et al.⁴ found that delirium increases the burden of care in elderly adults with Alzheimer's disease, while Mukherjee et al. ³⁶ stated that dementia level affects caregiver distress. Therefore, we may conclude that there are similarities between the findings of the current review and literature. This could be explained by deteriorating cognitive impairment, leading to more communication and motor disorders in the advanced stages of dementia.

In the current review, studies emphasised that higher dependency level increased caregiver burden.^24,25,37 In international literature, some studies found that dependence level of the patient had an effect.^{6,15,17,38,39}

The most frequently reported caregiver-related variables which increased caregiver burden in the studies included in the systematic review were being female, younger age, being unemployed, older age, lower education level.

Some studies reported that female caregivers had higher caregiver burden.^{16,23,25,37,40} Similarly, Campos-Puente et al. ⁴¹and Yeager et al. ⁴² reported that gender had an effect on caregiver burden, while other studies emphasised that female caregivers had a higher burden of care.^13,14,18,19 Almost in all societies women assume the role of caregiver because of their social roles that include patient care in addition to care of other family members at home. Therefore, the burden of women who provide care in addition to housework and child care would be higher than that of men, and this will increase their perceived burden.

Also, some studies reported that relatively young groups had higher burden level, and one study emphasised that caregivers who were themselves old as well as caregivers who were aged <40 years had higher burden.^25,26,29 On the other hand, some studies reported that older caregivers had higher caregiver burden. ^29,30 In international literature, a study found that younger caregivers had higher caregiver burden. ⁴³ The differences between the studies in the literature and the studies in the current review are thought to be caused by different perception of burden due to different socio-demographic, health and cultural characteristics of the groups.

A couple of studies reported that people with lower education levels perceived higher caregiver burden.^30,37 In international literature, a study⁴⁴ found that lower education level was a factor that increased caregiver burden, while another study⁴⁵ found that caregivers with higher education level perceived lower level of caregiver burden. ⁴⁵ Based on these findings, it was concluded that low education level may cause problems in efficient caregiving, problem-solving and coping strategies.

In the current review, some studies found that caregiver burden of unemployed people was high.^16,26,40 No similar finding was found in global literature. However, one study⁵ suggested that higher caregiver burden is associated with reduced work productivity. Unemployed caregivers spend a majority of their days with the people they provide care for, and, therefore, this finding is something that should be expected.

The current review has limitations. The research articles included had sample size as low as <150. Additionally, the review only covered studies done with specific inclusion criteria and published in either Turkish or English language. Reports and books on the subject in Turkey, if any, were not included in the current review.

 

Conclusion

 

The systematic review found several variables that affect caregiver burden. The most important of these variables include time spent on caregiving, stage of dementia, younger age of patients, higher dependence level, being female caregivers, being a young/old caregiver, being unemployed and having low education level. Based on these findings, protective measures for caregivers are need to reduce the risk.

 

Disclaimer: None.

Conflict of interest: None.

Source of Funding: None.

 

References

 

1.       WHO. 10 fact on dementia. [Online] [Cited 2020 June 29]. Available from: URL: https://www.who.int/features/factfiles/dementia/en/

2.       Keleş E,  Özalevli S. Alzheimer hastalığıvetedaviyaklaşımları. İzmir Kâtip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi. 2018; 3:39-42.

3.       Yıldırım MP, Özcan BA. Alzheimer hastalığıvebeslenmeileilişkisi. Sağlıkve Yaşam Bilimleri Dergisi. 2020; 2:66-73.

4.       Fong TG, Racine AM, Fick DM, Tabloski P, Gou Y, Schmitt EM, et al. The caregiver burden of delirium in older adults with Alzheimer disease and related disorders. J Am Geriatr Soc. 2019; 67:2587-92.

5.       Fujihara S, Inoue A, Kubota K, Yong KFR, Kondo K. Caregiver burden and work productivity among Japanese working family caregivers of people with dementia. Int J Behav Med. 2019; 26:125-35.

6.       Kawaharada R, Sugimoto T, Matsuda N, Tsuboi Y, Sakurai T, Ono R. Impact of loss of independence in basic activities of daily living on caregiver burden in patients with Alzheimer's disease: A retrospective cohort study. Geriatr Gerontol Int. 2019; 19:1243-7.

7.       Atak T, Özekes M. Demanslıhastalarlailgilenenaileüyelerininbakım verenyükününincelenmesi. Ege Eğitim Dergisi. 2019; 20:145-61.

8.       Brini, S, Hodkinson A, Davies, A, Hirani S, Gathercole R, Howard R,  et al. In-home dementia caregiving is associated with greater psychological burden and poorer mental health than out-of-home caregiving: a cross-sectional study. Aging Ment Health. 2021; 1-7.

9.       Del-Pino-Casado R, Priego-Cubero E, López-Martínez C,  Orgeta V. Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PloS One. 2021; 16:e0247143.

10.     İnci F, Erdem M. Bakım Verme Yükü Ölçeği’nin Türkçe'ye Uyarlanması Geçerlilikve Güvenilirliği. Anadolu Hemşirelikve Sağlık Bilimleri Derg. 2006; 11:85-95.

11.     Küçükgüçlü Ö, Söylemez BA, Yener G, Barutcu CD, Akyol MA. Examining factors affecting caregiver burden: a comparison of frontotemporal dementia and Alzheimer’s disease. Am J Alzheimers Dis Other Demen. 2017; 32:200-6.

12.     Aydın Ö, Akpınar E, Över F,  Bal U. Life satisfaction in a sample of Turkish caregivers of patients with Alzheimer's disease. JMHM. 2016; 4:45-9.

13.     Srivastava G, Tripathi R.K, Tiwari SC, Singh B,  Tripathi SM. Caregiver burden and quality of life of key caregivers of patients with dementia. Indian J Psychol Med. 2016; 38:133-6.

14.     Laporte Uribe F, Heinrich S, Wolf-Ostermann K, Schmidt S, Thyrian J.R, Schäfer-Walkmann S, et al. Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline. Aging & Ment Health. 2017; 21:926-37.

15.     Thyrian JR, Winter P, Eichler T, Reimann M, Wucherer D, Dreier A, et al. Relatives’ burden of caring for people screened positive for dementia in primary care. Zeitschriftfür Gerontologie Geriatr. 2017; 50:4-13.

16.     Altay B, Erkuran H, Avcı İA. Caring burden of caregivers of Alzheimer's patients and affecting factors. Samsun Sağ Bil Derg. 2018; 3:1-8.

17.     Siddiqui S, Khalid J. Determining the caregivers’ burden in caregivers of patients with mental illness. Pak J Med Sci. 2019; 35:1329-33.

18.     Sittironnarit G, Emprasertsuk W,  Wannasewok K. Quality of life and subjective burden of primary dementia caregivers in Bangkok, Thailand. Asian J Psychiatr. 2020; 48:101913.

19.     Zhong Y, Wang J, Nicholas S. Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden. BMC Geriatr. 2020; 20:1-10.

20.     Equator Network. PRISMA [Online]. [Cited 2021 September 22]. Available from: URL: https://www.equator-network.org/reporting-guidelines/prisma/.

21.     Gerris K,  Lacey A. The research process in nursing. 6th ed. London: Wiley-Blackwell. 2010.

22.     Equator Network. STROBE [Online] [Cited 2021 August 11]. Available from: URL: https://www.equator-network.org/reporting-guidelines/ strobe/

23.     Akpınar B, Küçükgüçlü Ö, Yener G. Effects of gender on burden among caregivers of Alzheimer's patients. J Nurs Scholarsh. 2011; 43:248-54.

24.     Yacı Ö. Caring for Alzheimer's patients at various stages Comparison of weight and depression. [MSc thesis]. Istanbul, Turkey: 2008.

25.     Cetinkaya F, Karadakovan A. Investigation of care burden in dementia patient caregivers. Turk J Geriatr. 2012; 15:71-178.

26.     Uygun ÜK, Taylan HH. Factors affecting the care burden of family members Providing primary caregiving to Alzheimer patients. The Journal of Academic Social Science Studies 2018;71:513-31. Doi: 10.9761/JASSS7819.

27.     Reed C, Belger M, Andrews JS, Tockhorn-Heidenreich A, Jones RW, Wimo A et al. Factors associated with long-term impact on informal caregivers during Alzheimer’s Disease dementia progression: 36-month results from GERAS. Int Psychogeriatr. 2020; 32:267-77.

28.     Schumann C, Alexopoulos P, Perneczky R. Determinants of self‐and carer‐rated quality of life and caregiver burden in Alzheimer disease. Int J Geriatr Psychiatry. 2019; 34:1378-85.

29.     Tezcan S. The difficulties experienced by people who care for Alzheimer's patients. Haliç University Institute of Health Sciences. [PhD thesis]. İstanbul, Turkey: 2017.

30.     Yıldızhan E, Ören N, Erdoğan A, Bal F. The burden of care and burnout in individuals caring for patients with alzheimer’s disease. Community Ment Health J. 2019; 55:304-10.

31.     Çınar E. Evaluation of the factors affecting the caregiver burden in caregivers of Alzheimer's patients. [MSc thesis]. Ankara, Turkey: 2012.

32.     Chen CT, Chang CC, Chang WN, Tsai NW, Huang CC, Chang YT, et al. Neuropsychiatric symptoms in Alzheimer’s disease: associations with caregiver burden and treatment outcomes. QJM: An Int J Med. 2017; 110:565-70.

33.     Cheng ST. Dementia caregiver burden: a research update and critical analysis. Curr Psychiatry Rep. 2017; 19:1-8.

34.     Pudelewicz A, Talarska D, Bączyk G. Burden of caregivers of patients with Alzheimer's disease. Scand J Caring Sci. 2019; 33:336-41.

35.     Kim B, Noh GO,  Kim K. Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis. BMC Geriatr. 2021; 21:160.

36.     Mukherjee A, Biswas A, Roy A, Biswas S, Gangopadhyay G, Das SK. Behavioural and psychological symptoms of dementia: correlates and impact on caregiver distress. Dement Geriatr Cogn Dis Extra. 2017; 7:354-65.

37.     Yurtsever S, Özge A, Kara A, Yandim A, Kalav S, Yesil P. The relationship between care burden and social support in Turkish Alzheimer patient’s family caregivers: Cross-sectional study. J Nurs Educ. 2013; 3:1-12.

38.     Riffin C, Van Ness PH, Wolff JL, Fried T. Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. J Am Geriatr Soc. 2019; 67:277-83.

39.     Seidel D, Thyrian JR. Burden of caring for people with dementia–comparing family caregivers and professional caregivers. A descriptive study. Journal of Multidiscip Healthc. 2019; 12:655-63.

40.    Erkuran H. The Effect of Caring Burden of Alzheimer's Patients on their Coping with Stress. [MSc thesis]. Turkey: Samsun, 2015.

41.    Campos-Puente ADLM, Avargues-Navarro ML, Borda-Mas M, Sánchez-Martín M, Aguilar-Parra JM, Trigueros R. Emotional exhaustion in housewives and alzheimer patients’ caregivers: Its effects on chronic diseases, somatic symptoms and social dysfunction. Int J Environ Res Public Health. 2019; 16: 3250.

42.    Yeager CA, Hyer LA, Hobbs B, Coyne AC. Alzheimer’s disease and vascular dementia: the complex relationship between diagnosis and caregiver burden. Issues Ment Health Nurs. 2010; 31:376-84.

43.    Andrén S, Elmståhl S. Relationships between income, subjective health and caregiver burden in caregivers of people with dementia in group living care: a cross-sectional community-based study. Int J Nurs Stud. 2007; 44:435-46.

44.     Mekawichai P, Saetang S. Caregiver burden among Thai dementia patients’ caregivers. J Psychiatr Assoc Thailand. 2013; 58:101-10.

45.    Varona R, Saito T, Takahashi M, Kai I. Caregiving in the Philippines: A Quantative survey on adult-child caregivers’ perceptions of burden, stressors, and social support. Arch Gerontol Geriatr. 2007; 45:27-41.

46.     Özel-Kızıl, ET, Altıntaş HÖ, Baştuğ G. Durmaz N, Altunöz U. The Effect of Agitation on Caregivers' Burden in Patients with Dementia. Turk J Geriatr. 2014; 17:256-61.

47.    Eğilli CS, Sunal N. Determination of Care Load of the Caregivers of Demented Patient and Relevant Affecting Factors. JAREN. 2017;3:83- 91.

48.    Onat HK, Çelik Y. Patient Care Burden: A Study Among Caregivers of Alzheimer's Patients. Hacettepe Sağlık İdaresi Derg. 2018;21:625-40.

49.     Şenturk SG, Akyol MA, Kücükgüclü O. The relationship between caregiver burden and psychological resilience in caregivers of individuals with dementia. Scand J Caring Sci. 2018; 11:1223-30.