You are on page 1of 20

Determinants of disabled elderly caregivers burden in Developing

Countries

Prof. Mohamed Mohamedy Awad, MD1, Hanan Abass El Gammal, MD1

Prof. Magda Taha Fahmy, MD2.


1
Department of Family medicine, Faculty of medicine, Suez Canal University.
2
Department of Neuro- psychiatry , Faculty of medicine, Suez Canal University.

Type pf research: original article


Author Role
Dr Hanan abbas The idea of research, design of
Lecturer of Family questionnaire, literature review,
Medicine, Suez Canal data analysis and review of
University references
Email:

hanfmhananfmhan@yahoo
.com
Professor Mohamed Interpretation of collected data,
Mohamedy Awad, Professor literature review, statistical
of Family Medicine , Suez analysis review of discussion
Canal University Email

mohammadydiab@yahoo.c
om
Prof. Magda Fahmy, Literature review, review of
professor of psychiatry, discussion
Suez Canal University

Corresponding author:
Dr hanan abbas
Lecturer of family medicine, Suez canal university
Mobile: 0123808365
E mail: hanfmhananfmhan@yahoo.com
Abstract:
Background:

Caring for a physically disabled relative can be physically and emotionally


stressful, placing the caregiver at heightened risk of illness and chronic disease
onset. Although an abundance of research has focused on the adverse
emotional and social effects of care giving, there have been few studies of the
physical health consequences for this group.( Norris VK, et al, 1990).

This study aims to assess relationship between care giving process and
disability of the elderly.

Subjects and method: A cross sectional household study was conducted to


assess the burden facing the caregivers of elderly with functional and cognitive
disabilities living in Ismailia governorate.
Comprehensive sample was conducted ; all disabled elderly were included after
. assessment of functional disability and cognitive disability among them
level of functional disabilities of elderly was assessed by using the Katz ADL
(Activity Of Daily Living) scale, and assessment of caregiver burden through
The Zarit Burden Interview.
Results: The mean age of the studied elderly was 76.5+ 9.2 (65-87), 48.9%
were females, 38.6% are having chronic diseases. The mean age of elderly
caregiver 37.6±11.5 (15-76), 78.5 % were females, mean care giving hours were
15.6±6.9 (4-24).
According to Katz index of independence in ADL the elderly had mild
dysfunction in 50.4 %, by using the mini mental score about 28.6% of disabled
elderly suffer from cognitive disability with mean mental score was 21.8±3.9.

Prevalence of burden among caregivers was 37 % with mean burden score was
22. The study showed that statistically significant positive correlation between
burden score and age of the elderly, number of chronic diseases, and caregiver
age. And statistically significant negative correlation between burden score and
ADL score, MMSE score. But no statistically significant between burden score
care-giving hours/d, and income.

Conclusion:

Home care of chronically disabled persons has received considerable attention


in recent years, Caregivers often spend a disproportionate amount of their
emotional, physical, or financial resources on the person requiring care. As time
and illness progress, the responsibility may be met with decreasing enthusiasm,
regardless of emotional relationships, and thus leads to burnout and increased
caregiver burden.

Introduction:

By 2020, the world's population is expected to include more than 1 billion


elderly people, most of whom are living in developing countries rather than in
developed ones . Quality of life in later years may limit the ability to care for
oneself without assistance ( Sevgi Canbaz, et al, 2003).
The disabled elderly are those individuals who require assistance with basic
Activities of Daily Living, commonly referred to as ADLs. ADLs have become
an accepted way to define and measure the long-term care population, because
disability in activities of daily living is a direct indicator of the need for care

( Brian o. Burwell, and Beth Jackson, 1994).

Impairments in cognitive functioning often lead to greater assistance needs,


because people who are cognitively impaired often require 24-hour supervision
so they do not harm themselves or others (Brian o. Burwell, and Beth
Jackson, 1994).

Informal caregiver refer to family members who provide the care to impaired
older adults living in the community (Lisa Nerenberg, 2002). Caregivers'
burden is a social issue in many countries (Aria Y, et al, 2005) .

The burden of care is defined as the discomfort experienced by the principal


caregiver of an older family member, including the caregiver's health,
psychological well-being, finances, and social life (Zarit SH, et al, 1980) .
Caregiver burden is defined as the strain or load borne by a person who cares
for an elderly, chronically ill, or disabled family member (Stuckey JC, et al,
1996). It is a multidimensional response to physical, psychological, emotional,
social, and financial stressors associated with the caregiving experience
(Richard T et al, 2000).

Caregiver burnout is the progression of caregiver burden to the point where the
experience is no longer a viable or healthy option for either the caregiver or the
person receiving care (Zarit SH et al, 1980).
Arai et al 2002; conducted a survey targeting all disabled elderly and their
principal caregivers residing in Matsuyama Town located in rural northern
Japan, using Zarit Burden Interview questionnaire to assess the level of burden
among the caregivers and found that the prevalence of this burden was 32.7%
( Aria Y et al, 2002 ).

Difficulties experienced by caregivers often are considered only after the signs
of burnout are apparent.

Illness frequently has a ripple effect across the entire family group, affecting
both the health of other family members and the quality of care they deliver
( Stone R et al ,1987).

Caregivers often spend a disproportionate amount of their emotional,


physical, or financial resources on the person requiring care. As time and illness
progress, caregivers may find themselves angry or resentful about this toll on
their lives; insight into their feelings often serves only to make them feel guilty
or shameful about their reactions (Richard T et al, 2000).

Research by Saad et al examined the characteristics of caregivers’ coping


mechanisms and found that active coping skills and management plans were
associated with lower caregiver burden levels (Saad. K, Hartman. J, 1995).
Strong social support has also been correlated with lower caregiver burden-
specifically, visits by family and a strong social network were associated with
lower levels.( Dunkin JJ& Anderson H, 1998).

So the aim of the work is to improve quality of life of family caregivers of


elderly, by early detection of signs and degree of care-giver burden and factors
affecting it positively.
Subjects and Methods
Study design:
A cross sectional household study was conducted to assess the burden facing
the caregivers of elderly with functional and cognitive disabilities living in
Ismailia governorate from 6/2008-6/2009.
Study setting:
This work was done in Ismailia governorate .
Study population:
Participants are family caregivers providing home healthcare to people aged 65
years and above living in Ismailia were allocated to this study.
:Inclusion criteria
Any elderly with functional and or cognitive disabilities and their family -
caregivers providing home care to people aged 65 years either living with the
.elderly or not
:Exclusion criteria
Elderly with disabilities due to acute condition as new operation, and any -
.family members who are not care giving to the elderly
:Sampling
Comprehensive sample was conducted ; all disabled elderly and their caregivers
were included after assessment of functional disability and cognitive disability
. among them
:Procedure
:The data was collected through structured household questionnaire including
A-Socio demographic data: -elderly age 65 and above , gender, marital state,
chronic illness as hypertension, diabetes coronary artery disease,
cerebrovascular disease, osteoarthritis, hearing impairment, visual impairment.
-Caregiver’s age, gender, marital state, relationship to elderly, working status,
income (sufficient or insufficient), daily hours spent on care giving.
B-level of functional disabilities of elderly through:
The Katz ADL ( Activity Of Daily Living) scale (Katz, S. (1983). assesses a
patient's ability to perform six related functions: bathing, dressing, toileting,
transferring, continence, and eating.
Each criteria is graded on level of dependence
-Performs independently
-Performs with assistance
patients are scored yes/no for independence in each of the six functions. A score
of 6 indicates full function, 4 indicates moderate impairment, and 2 or less
indicates severe functional impairment.
C - Cognitive disability of the elderly: one of the most commonly used
screening tool for dementia is the Mini-Mental State Test. (Karl E, et al 2000).
It is the best tool that can be used to systematically and thoroughly assess
mental status. It is an 11-question measure that tests five areas of cognitive
function: orientation, registration, attention and calculation, recall, and
language. The maximum score is 30. Any score over 27 (out of 30) is
effectively normal. Below this, 20-26 indicates mild dementia; 10-19 moderate
dementia, and below 10 severe dementia (Powsner S, Powsner D (2005).
D- Assessment of caregiver burden through The Zarit Burden Interview
that is consist of a care burden scale developed by Zarit, comprises 22 items
assessed by a 5-point Likert scale to provide a total score of 0 to 88, with a
higher score representing a greater care burden (Aria Y, 1997).
The Zarit Burden Interview is now the instrument most widely used in North
America and Europe for assessing the burden experienced by family caregivers
who look after the community-residing impaired elderly (Zarit SH et al, 1980).

Questions (rated as 0-Never to 4-Nearly always)

Interpretation

• No or minimal burden: 0 to 20
o Mild to moderate burden: 21 to 40
o Moderate to severe burden: 41 to 60
o Severe burden: 61 to 88
-The questionnaire was translated into Arabic and the necessary
modifications were done.
Pilot study was done to assess understandability of the items, their meaning,
and their clarity to the Egyptian patients.
Data presentation and analysis
Data was collected by the researcher and was be processed by using SSPS
V.11.
- Chi-square test was used for categorical variables and the level of significance
was be consideration statistically significant if (P-value is 0,05) and will be high
statistically signification if (P-value is 0,01)
- T-test was done for continuous variables.
-Pearson correlation test (r) was used for correlation between the variables of
the study.
The result was presented in order of percentage and tabulated in graphs and
tables.
RESULTS

Table (1). Socio-demographic characteristic of the studied elderly (n=280).

Variables Total (n=280)


Mean age ± SD (range) 76.5±9.2 (65-87)
Age groups (years): No. %
65-<70 100 35.7
70-<75 67 23.9
75-<80 48 17.1
80-<85 35 12.5
≥85 30 10.7
Sex:
Male 143 51.1
Female 137 48.9
Marital status:
Married 152 54.3
Widow 128 45.7
Chronic diseases:
No chronic diseases 46 16.4
Chronic diseases 234 83.6

Table( 1) illustrate the socio demographic data of disabled elderly, their mean age was
76.5±9.2, total number of male was 51.1% and female 48%, and about 83.6% suffer from
chronic diseases.
Table (2). Socio-demographic characteristic of the elderly caregiver (n=280).

Variables Total (n=280)


Mean age ± SD (range) 37.6±11.5 (15-76)
Age groups (years): No. %
15-<35 189 67.5
35-<55 67 23.9
55-<75 18 6.4
≥75 6 2.1
Sex:
Male 35 12.5
Female 245 87.5
Marital status:
Single 27 9.6
Married 242 86.4
Widow 3 1.1
Divorced 8 2.9
Relation to elderly:
Spouse 82 29.3
Daughter 27 9.6
Son 32 11.4
Daughter-in-low 131 46.8
Grandchild 8 2.9
Occupation:
Employed 51 18.2
Retired 4 1.4
Not employed 225 80.4
Income:
Sufficient 205 73.2
Insufficient 75 26.8
care-giving (hours):
<6 15 5.4
6-<12 54 19.3
12-<18 82 29.3
18-24 129 46.0
Mean care-giving hours ± SD (range) 15.6±6.9 (4-24)

Table( 2) illustrate the socio demographic data of caregivers, their mean age was 37.6±11.5,
total number of male was 12.5% and female 87.5%, and about 46.8% were daughter-in-law,
mean care- giving hours15.6 + 6.9
Table(3). Grading of Katz index of independence in ADL in the studied elderly (n=280).

ADL score No. %


Severe dysfunction (score ≤2) 48 17.1
Moderate dysfunction (score 3-4) 51 18.2
Mild dysfunction (score 5) 141 50.4
Full function (score 6) 40 14.3
Total 280 100.0

Table 3 show that about 82.9% of disabled elderly suffer from functional disability. With
mild disability 50.4%, moderate disability 18.2% and sever disability 17.1%.

Table(4). Mini-Mental State Score among elderly (n=280).

Variables Total (n=280)


Mean mental score ± SD (range) 21.8±3.9 (9-25)
Mental state score (points): No. %
Normal (≥22) 200 71.4
Mild disability (16-21) 51 18.2
Moderate disability (8-15) 20 7.1
Severe disability (<8) 9 3.2

Table 4 showed that about 28.6% of disabled elderly suffer from cognitive disability with
mean mental score was 21.8±3.9 .

Fig (1) prevalence of burden among caregivers

Fig (1) illustrated that burden among caregivers was 37%. With mild burden was
30 %, moderate burden was 5%. Severe burden was 2 % with mean burden score was 22.

Table(5) Correlation between burden score and other study variables.

Burden score
Pearson Correlation (r) p-value
Elderly age 0.298 0.000**
No. Chronic disease 0.315 0.000**
Caregiver age 0.276 0.000**
Income 0.061 0.305
ADL score -0.473 0.000*
Mental score -0.335 0.005**
Care-giving/h/d -0.019 0.753
* Correlation is significant at the 0.05 level.
** Correlation is significant at the 0.01 level.

Table (5) demonstrate statistically significant positive correlation between burden score and
age of the elderly, number of chronic disease, and caregiver age. And statistically significant
negative correlation between burden score and ADL score, MMSE score. But no statistical
significance between burden score care-giving hours/d, and income.

Discussion

The objective of this study was to assess family caregivers burden for
disabled elderly in Ismailia, Egypt. The study included 280 disabled elderly
(functional or and mental disability) and their family caregivers.

This study found that caregivers were females 87.5%, Our findings are
similar to previous research findings in the study conducted by Rashmi (2007)
and Tomoko et al (2003), who reported that the most caregivers are females.
Most reports indicate that women make up about three quarters of all primary
caregivers (Montgomery & Kosloski, 1999; Wagner, 1997;Stone etal.,
1987) .
Three key findings have materialized from the body of literature that explores
issues of gender. First, most caregivers are female. Second, there are differences
in the way that men and women fill care giving roles. Third, female caregivers
tend to report greater levels of stress or strain than do males (Neal, Ingersoll-
Dayton, & Starrels, 1997).
However, the number of male caregivers appears to be rising, and a survey
conducted by the National Family Caregiver Association (NFCA) in 2000 found
that 44% of the caregivers interviewed were male (NFCA, 2000).
Studies had found that women provide more intensive care than do men. Male
spousal caregivers are more likely than female spousal caregivers to obtain in-
home services to aid in their responsibilities and sons and daughters tend to
choose different solutions when care giving situations arise. For example,
women are more likely to perform tasks such as cooking and cleaning, which
often require more time or more frequent contact than do the tasks that males
are more apt to perform, such as financial management and home repairs
(Tennstedt, 1999).

The present study revealed that about half of caregivers (46.8%)was


daughter- in -law while the spouse represented 29.3% of the sample. This result
was consistent with one study done in India by Rashmi Gupta, (2007) found
that 30.1% of caregivers were daughters-in-law while 9.7% were spouses. But
not consistent with many results as in the study conducted Tomoko et al,
( 2003) which revealed that the spouse represented 71% of the sample., and the
study by Montgomery and Kosloski, ( 2000) Spouses are most likely to be
primary caregivers (48 percent). and a study by G. Karlikaya et al( 2005)
reported that 44.2% of caregivers were spouse. This deference between our
result and ther studies could be due to difference in the culture in Egypt, as
extended family is still present and more than generation live in the same house.
The present study revealed that the prevalence of burden among family
caregivers for disabled elderly was 37. % (30% mild, 5. % moderate, 2 %
severe) with mean burden score was 22. Many studies were conducted to
determine the burden among caregivers of disabled elderly. Some studies are
consistent with our results as that reported by Yumiko aria (2004) a study was
conducted to target all disabled elderly and their principal caregivers residing in
Matsuyama town located in rural northern Japan found that burden among
family caregivers for disabled elderly was 32.5 with mean burden score 28.7.
Other study showed higher prevalence of burden as G. Karlikaya et al (2005)
reported that 90% of the caregivers had some degree of burden. This
difference in our result and the other results due to difference in the sample.
This study revealed that there was negative relation between functional
disability among the elderly and caregiver burden. Also our study revealed that
there was negative relation between mental disability of elderly and caregiver
burden.
Our results is consistent with other studies such as the study conducted by
Fredman, et al (1995) to assess burden among white and black caregivers to
elderly adults, revealed that care giving activities (helps with ADLs, extra time
spent care giving, unable to leave care recipient alone), and care recipient needs
(IADL limitations, cognitive impairment or, recent hospitalization) were
significantly associated with burden among caregivers.
Hiroko Miura(,2005) .reported that on examining the relationship between
caregiver burden and attributes of the impaired elderly including ADL and
cognitive function,
bi-variate analysis indicated that cognitive status of the impaired elderly was
significantly related to family caregiver burden.
Arai (1999) reported that partial limitations in ADL was found to be risk
factor for caregivers' feelings of heavy burden.
Andrieu et al (2003) studied caregivers of 531 dementia patients and
concluded that low MMSE, behavioural problems and female gender were
associated with a high level of burden.
Factors related to ending care giving in the long-term are presence of
cognitive impairment in the recipient, assisting with more ADL tasks, and
viewing care giving as emotionally hard (Judith D. Kasper, 1990) .
Many studies examined the stressfulness of care giving, and claimed that
stress did not necessarily result in quitting. Those particular studies tried to
determine which factors increase the probability that caregivers drop out. The
signal is clear: quitting was more likely to occur when the care recipient had
many ADL limitations and needs help on demand.
( Boaz, and Muller, 1992)
Karin (1999) found that there was a positive correlation between increased
activities of care performed by the caregiver and caregiver burden. This
included both the provision of direct care such as bathing and indirect care such
as running errands, preparing meals, and performing housework.
The stresses of care giving are often formidable. Surveys indicate that
caregivers feel particularly stressed by: (1) having to provide care when they are
sick; (2) having to provide constant attention to the care-recipient; and (3)
feeling that informal care giving has worsened their own health. These stresses
are most strongly associated with the level of disability of the care-recipient. As
the needs of the care-recipient increase, so does the stress of providing care.

Conclusion : the present study revealed that there was positive correlation
between age of disabled elderly and the degree of burden, and the burden
increase when the disabled elderly was male. The study showed that
caregivers of disabled elderly who has chronic disease, suffer from more burden
than who do not have chronic disease.
Also there was a statistically significant association between sex of caregivers
and the level of the burden. male caregivers suffer more burden than female.
Our study revealed that the older age of the caregivers suffer from more
burden than the younger age and found that the spouse has higher burden than
the other member of family.
Our study revealed that there was negative relation between elderly functional
disability, mental disability, of elderly, income of the caregivers, care giving
hours and the level of the burden.

References:
1. Norris VK, Stephens-Parris MA, Kinny JM (1990). The impact of family

interactions on recovery from stroke: Help or hindrance? The Gerontologist,


30:535-542.
2. Sevgi Canbaz, Ahmet Tevfik Sunter, Sennur Dabak, Yildiz Peksen
(2003). The prevalence of chronic diseases and quality of life in elderly
people in samsun. Turk J Med Sci; 33; 335-340.
3. Brian O.Burwell and Beth Jackson (1994); The Disabled Elderly and
Their Use of Long-Term Care : U.S. Department of Health and Human
Services from http://aspe.hhs.gov

4. Lisa Nerenberg, M.S.W., M.P.H (2002): Caregiver Stress and Elder Abuse
National Center on Elder Abuse Washington, D.C. March 2002 from www.
Elderlyabuse center.org

5. Arai Y, Kumamoto K, Zarit SH, Dennoh H and Kitamoto M (2005);


Japanese fear of growing old. J Am Geriatric Soc; 53: 1641–1642.
6. Zarit SH, Reever KE and Bach-Peterson J (1980); Relatives of the
impaired elderly: Correlates of feelings of burden. Gerontologist;20(6):649-
655.
7. Stuckey JC, Neundorfer MM, Smyth KA(1996). . Burden or well-being:
the same coin or related currency? Gerontologist;36(5):686-93.
8. Richard T. Kasuya, , Patricia Polgar-Bailey& Robbyn Takeuchi,
MSW(2000) . Caregiver burden and burnout. Postgraduate Medicine ; 108;7
9. Arai Y, Zarit SH, Sugiura M, Washio M (2002). Patterns of outcome of
caregiving for the impaired elderly: a longitudinal study in rural Japan.
Aging Ment Health; 6: 39–46.
10. Stone R, Cafferata GL and Sangl J (1987); Caregivers of the frail elderly:
a national profile. Gerontologist;27(5):616-26.
11. Saad K, Hartman J, Ballard C, et al (1995); Coping by the carers of
dementia sufferers. Age Ageing;24(6):495-498.
12. Dunkin JJ and Anderson-Hanley C (1998); Dementia caregiver burden: A
review of the literature and guidelines for assessment and intervention.
Neurology;51:S53-S60.
13. Katz, S. (1983). Assessing self-maintenance: Activities of daily living,
mobility and instrumental activities of daily living. JAGS, 31(12), 721-726.
14. Karl E. Miller, M.D, Robert G. Zylstar, ED.D, and John B. Standridge ,
M.D (2000) ; The Geriatric Patient: A Systematic Approach to Maintaining
Health . Am Fam Physician;61:1089-104.
15. Powsner S, Powsner D (2005). "Cognition, copyright, and the classroom".
The American journal of psychiatry 162 (3): 627-8.
16. Rashmi Gupta. (2007); The Perceived Caregiver Burden Scale for
Caregivers of Elderly People in India, Journal of Applied Gerontology: 26;
120.
17. Tomoko Morimoto, Andrea S. Schreiner, Hitoshi Asano (2003);
Caregiver burden and health-related quality of life among Japanese stroke
caregivers. Age and Ageing; 32: 218–223
18. Montgomery, R., & Kosloski, K. (1999); Family caregiving: Change,
continuity, and diversity. In R. Rubinstein & P. Lawton (Eds.), Alzheimer’s
Disease and Related Dementias: Strategies in Care and Research. New York,
NY: Springer Publishing Company.
19. Wagner, D. (1997); Comparative analysis of caregiver data for caregivers to
the elderly . National Alliance for Care giving report.
20. Neal, M., Ingeroll-Dayton B., & Starrels M. (1997); Gender and
relationship differences in caregiving patterns and consequences among
employed caregivers. The Gerontologist, 37, 804-816.
21. National Family Caregiver Association. (2000); Caregiver survey report-
2000.
22. Tennstedt, S., Crawford, S., & McKinlay, J. (1999); Determining the
pattern of community care: Is co-residence more important than caregiver
relationship? Journal of Gerontology: Social Sciences, 48(2), S74-S83.
23. Tennstedt, S. (1999). Family caregiving in an aging society. Washington,
DC: Administration on Aging. Retrieved March 22, 2001 from the World
Wide Web: http://www.aoa.gov/caregivers/ FAMCARE.html.
24. Montgomery, R. & Kosloski, K. (2000); Change, continuity and diversity
among caregivers. Washington, DC: Administration on Aging. Retrieved
May 18, 2001 from the World Wide Web: http://www.aoa.gov/ care.
25. Karlikaya G., Yukse G, Varlibas F, Tireli H (2005): Caregiver Burden
In Dementia: A Study In The Turkish Population. The Internet Journal of
Neurology. Volume 4 Number 2.
26. Yumiko Arai1, Keigo Kumamoto1 and Masakazu Washio (2004):
Assessment of family caregiver burden in the context of the LTC insurance
system: J-ZBI Geriatrics and Gerontology International Volume 4, S53 .
27. Freedman L, Daly MP and Lazur AM (1995); Burden among white and
black caregivers to elderly adults. Psychological Sciences and Social
Sciences, Vol. 50, Issue 2, S110-S118,
28. Hiroko Miura, Yumiko Arai, & Kiyoko Yamasaki (2005); Feelings of
burden and health-related quality of life among family caregivers looking
after the impaired elderly. Psychiatry and Clinical Neurosciences volume 59,
p.551
29. Arai. Y, Washio .M (1999) ; Burden felt by family caring for the elderly
members needing care in southern Japan Aging & Mental Health, Volume
3, Issue 2 May, pages 158 – 164.
30. Andrieu S, Balardy L, Gilette-Guyonnet S, Bocquet H, Cantet C,
Albarede JL, Vellas B& Grand A (2003); Burden experienced by informal
caregivers assisting Alzheimer's patients. Rev Med Interne volume ;23 Suppl
3:351-59.
31. Judith D. Kasper, Ulrike Steinbach and Jane Andrews( 1990): Factors
Associated with Ending Care Giving Among Informal Caregivers to the
Functionally and Cognitively Impaired Elderly. Population, Johns Hopkins
University, February 1990 U.S. Department of Health and Human Services.
32. Boaz, R.F. and Muller, C.F (1992); Paid Work and Unpaid Help by
Caregivers of the Disabled and Frail Elderly. Medical Care. Feb 30(2):149-
158.
33. Karin J. Faison, Sandra H. Faria and Deborah Frank(1999); Caregivers
of Chronically Ill Elderly: Perceived Burden Journal of Community Health
Nursing, Vol. 16, No. 4 ; pp. 243-253.

You might also like