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Care and functional disabilities in daily activities - ELSI-Brazil

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Objective: To investigate the prevalence of demand and provision of care for the Brazilian population with functional disabilities in activities of daily living. Methods: This is a quantitative and descriptive study using baseline data from ELSI-Brazil (Brazilian Longitudinal Study of Aging), a cohort study with a representative sample of the Brazilian population aged 50 years or older (n = 9,412). We considered the demand for care from the self-report of having some difficulty to perform at least one activity of daily life (eating, bathing, going to the toilet, dressing, moving in a room [ambulation], and transferring from chair [transfer]). Care supply was measured by having some help to perform the activity of daily living. Results: Approximately a quarter of the individuals evaluated (23.2%) reported difficulty in at least one activity of daily living, especially regarding transfer and dressing. Age, schooling, and number of chronic diseases were significantly associated with the difficulty in activities of daily living. Among those who reported difficulty, 35.1% received help of others and 11.8% did not receive (lack of care). The activities with greater lack of care were bathing (13.3%) and transfer (11.7%), which reveals an undignified survival condition. Care remains a family (94.1%) and female (72.1%) issue; despite the important changes that have taken place in society, there is still a lack of care policies. Of the total caregivers, 25.8% reported stopping working or studying to perform this role and only 9.2% were paid (hired ones or family members). Conclusions: The ELSI-Brazil results reveal the expressive care demand of the Brazilian population aged 50 years or older with functional disabilities on activities of daily living and the lack of care policies aimed at this public.
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https://doi.org/10.11606/S1518-8787.2018052000650
Supplement ELSI-Brazil
Original Article
Rev Saude Publica. 2018;52 Suppl 2:9s
Correspondence:
Karla Cristina Giacomin
Av. Afonso Pena, 2336 Funcionários
30110-028 Belo Horizonte, MG, Brasil
E-mail: kcgiacomin@hotmail.com
Received: Jan 11, 2018
Approved: Apr 13, 2018
How to cite: Giacomin KC, Duarte
YAO, Camarano AA, Nunes DP,
Fernandes D. Care and functional
disabilities in daily activities –
ELSI-Brazil Rev Saude Publica.
2018;52 Suppl 2:9s.
Copyright: This is an open-access
article distributed under the
terms of the Creative Commons
Attribution License, which permits
unrestricted use, distribution, and
reproduction in any medium,
provided that the original author
and source are credited.
http://www.rsp.fsp.usp.br/
Care and functional disabilities in daily
activities – ELSI-Brazil
Karla Cristina GiacominI,II, Yeda Aparecida Oliveira DuarteIII,IV
, Ana Amélia CamaranoV,VI, Daniella
Pires NunesVII, Daniele FernandesV
I Secretaria Municipal de Saúde. Diretoria de Assistência. Belo Horizonte, MG, Brasil
II Fundação Oswaldo Cruz. Instituto René Rachou. Núcleo de Estudos em Saúde Pública e Envelhecimento.
Belo Horizonte, MG, Brasil
III Universidade de São Paulo. Faculdade de Saúde Pública. São Paulo, SP, Brasil
IV Universidade de São Paulo. Escola de Enfermagem. São Paulo, SP, Brasil
V Instituto de Pesquisa Econômica Aplicada. Diretoria de Estudos e Políticas Sociais. Rio de Janeiro, RJ, Brasil
VI Fundação Getúlio Vargas. Escola Brasileira de Administração Pública e de Empresas. Rio de Janeiro, RJ, Brasil
VII Universidade Federal do Tocantins. Curso de Enfermagem. Palmas, TO, Brasil
ABSTRACT
OBJECTIVE: To investigate the prevalence of demand and provision of care for the Brazilian
population with functional disabilities in activities of daily living.
METHODS: is is a quantitative and descriptive study using baseline data from ELSI-Brazil
(Brazilian Longitudinal Study of Aging), a cohort study with a representative sample of the
Brazilian population aged 50 years or older (n = 9,412). We considered the demand for care from
the self-report of having some diculty to perform at least one activity of daily life (eating,
bathing, going to the toilet, dressing, moving in a room [ambulation], and transferring from chair
[tra nsfer]). Care supply was measure d by hav ing some help to per form the activity of da i ly living.
RESULTS : Approximately a quarter of the individuals evaluated (23.2%) reported diculty in
at least one activity of daily living, especially regarding transfer and dressing. Age, schooling,
and number of chronic diseases were signicantly associated with the diculty in activities
of daily living. Among those who reported diculty, 35.1% received help of others and 11.8%
did not receive (lack of care). e activities with greater lack of care were bathing (13.3%) and
transfer (11.7%), which reveals an undignied survival condition. Care remains a family (94.1%)
and female (72.1%) issue; despite the important changes that have taken place in society, there is
still a lack of care policies. Of the total caregivers, 25.8% reported stopping working or studying
to perform this role and only 9.2% were paid (hired ones or family members).
CONCLUSIONS: e ELSI-Brazil results reveal the expressive care demand of the Brazilian
population aged 50 years or older with functional disabilities on activities of daily living and
the lack of care policies aimed at this public.
DESCRIPTORS: Aged. Aging. Activities of Daily Living. Caregivers. Health Surveys.
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INTRODUCTION
Currently, Brazil has 54 million persons aged 50 and over, of which 26.5 million are older
adults. is population ages with chronic non-communicable diseases in very unequal
social contexts that have an impact on unequal care demands and supply1.
Data from the Brazilian National Health Survey (PNS-2013) on the care received show
that approximately 30% of the Brazilians aged 60 years and over have some diculty to
perform at least one of 10 selected activities of daily living (ADL). Informal care (unpaid)
prevailed (approximately 80%), a small proportion received formal care (approximately
6%), 7% received a combination of informal and formal care, and 6% reported receiving no
help2. Another study showed that the richer strata were more likely to receive any help to
perform ADL. In addition, living with another person was associated with the provision
of care (formal or informal) for those with lower educational and socioeconomic levels3.
Across the world, several ongoing longitudinal international cohorts have addressed the
issue of care provision for persons aged 50 years and over with disabilities4,5. Although it
can be understood as medical services provided by health professionals, long t term care is
prov ided more informally (by fami ly and friends) than formal ly 6. is infor ma l care, essential
to the health system7, can be characterized as a hidden health system8.
In order to contribute to the planning and adaptation of care policies in a global perspective,
the ELSI-Brazil (Brazi lia n Longit ud i nal Study of Aging)9 was modeled and harmonized with
HRS (Health Retirement Studies) and their counterparts in the dierent continents5. e
results will allow the evaluation (and improvement) of the quality of this common, singular,
and universal experience of caring for others and oneself, by answering the following
question: who are the persons who need or provide care for Brazilians aged 50 and over
with diculties in their daily activities?
is work aimed to investigate the prevalence of demand and provision of care for the
Brazilian population with functional disabilities in activities of daily living.
METHODS
e ELSI-Brazila is a cohort st udy with a representative sample of the Brazil ian population aged 50
years and over. e basel ine survey was conducted between 2015 and 2016. More methodological
details are described in Lima-Costa et al.9 e nal sample of the ELSI-Brazil consisted of 9,412
persons aged 50 years and over living in 70 municipalities of dierent Brazilian regions.
e prole of the care recipients was evaluated according to the following variables:
a. Sociodemographic and health: gender, age (50–59 years, 60–69 years, 70–79 years, 80 years
and over), schooling level in complete years (illiterate, 1–3, 4–7, 8–11, 12 or more), number
of residents in the household, and number of self-reported chron ic diseases. e chronic
diseases investigated were: hypertension, diabetes, chronic obstructive pulmonary
disease, cancer, heart disease (angina, heart failure, or acute myocardial infarction),
cerebrovascular accident, arthritis or rheumatism, and osteoporosis.
b. Diculty in performing activities of daily living (ADL): each participant answered
separate questions about six activities and their degree of diculty in performing them.
e activities evaluated were: eating, bathing, going to the toilet, dressing, ambulation,
and transfer. e ambulation variable was evaluated by the diculty of the interviewee
to walk from one room to another on the same oor, while the transfer activity referred
to the act of sitting or getting up from a chair, including wheelchair.
We considered as having diculty in performing the activities when the participant reported
little diculty, great diculty, or that they could not perform it. Functional disability was
a Fundação Oswaldo Cruz.
Brazilian Longitudinal Study of
Aging. Rio de Janeiro; c2015
[cited 2017 Nov 28]. Available
from: http://elsi.cpqrr.fiocruz.br
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attributed to those who reported some degree of diculty in performing at least one of
these activities.
Regarding the receipt of help, the interviewee was classied as: no help needed, when
reporting diculty in any activity but no need for help; receipt of help, when reporting
getting any help to perform any activity ; no receipt of help, when reporting no receipt of
help in any activity.
c. Need for caregiver: it was asked to those participants who reported diculty in at least
one activity if they had any help. e answers were categorized as: (1) yes, (2) no, if they
needed help, and (3) no, because they did not need help. It was also asked who provided
the help for each task to those who answered yes.
It was aske d to the inter viewees the charact eristics of careg iver s. is refers to the prima r y
caregiver:
d. Sociodemographic: gender, age (continuous and categorical), marital status (married,
widow/widowed, separated or divorced, single), schooling level (can read or write a
message), degree of kinship with the care recipient, type of caregiver (paid or not).
Since the partic ipant could have received help from more tha n one per son, it was considered
separately the activities for which the participant obtained help from unpaid (informal care)
and paid (formal care) persons. In relation to kinship, it was considered as family caregiver
the family member who cared regardless of the geographic dista nce in relation to the person
cared for, with or without remuneration. Non-family members included hired caregivers,
who were not family members, and domestic worker.
e. Care training: if the caregiver received specic training and, if so, the number of
studied hours.
f. Care-related characteristics: the number of weekly days spent with caring and whether
the caregiver stopped working or studying for it.
All analyses were performed using the procedures for complex samples of the statistical
package Stata, version 13.0, considering individual sample weights and sampling parameters.
For the analysis, it was used the chi- square test with Ra o -Scott correc t ion. Poisson regression
analysis was used for the estimates of prevalence ratio and respective 95% condence
intervals for the association between diculty in ADL and independent variables. It was
included the variables that presented p < 0.20 in the multiple model, and those that presented
a value of p < 0.05 were kept in the nal model.
e ELSI-Brazil was approved by the Research Ethics Committee of the Instituto René Rachou
of the Oswaldo Cruz Foundation (Protocol 886.754) and all participants of the study signed
the informed consent form.
RESULTS
e distribution of the sociodemographic characteristics of the 9,412 study participants is
presented in Table 1. Most were female (54.0%), older adults (53.4%), had more than four
schooling years n (67.2%), and had at least one chronic disease (71.7%). Almost a quarter
of the individuals reported diculty in at least one ADL, and the most prevalent was to
transfer and to dress.
e prevalence of diculty in ADL according to sociodemographic characteristics and
impairment of ADL is described in Table 2. Age, schooling years, and number of chronic
diseases were signicantly associated with diculty in ADL. Among the oldest adults
(80 years and over), the prevalence of this outcome wa s 45% hig her tha n amon g the youngest .
Prevalence was almost triple among the illiterate in relation to the most educated, and
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Care and functional disabilities – ELSI-Brazil Giacomin KC et al.
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it was more than double among those who reported two or more chronic diseases when
compared to those who had one or zero.
Among the participants who reported some diculties in the performance of ADL, it was
veried whether they received the necessary help (35.1%) or if they reported a lack of care
(11.8%). It was found the greatest proportions of lack of care among the women, in those
individuals aged 60-69 years, with from one to three full schooling years, living in a larger
family, and in those with two or more chronic diseases (Table 3).
Table 1. Distribution (%) of study participants ( 50 years) according to sociodemographic characteristics,
impairment of daily activities. Brazilian Longitudinal Study of Aging (ELSI-Brazil), 2015–2016. (n = 9,412)
Characteristics Total
Sex
Female 54.0
Male 46.0
Age (in years)
50–59 47.6
60–69 29.7
70–79 15.6
80 and over 7.1
Schooling (full years of study)
Zero 13.3
1 to 3 19.5
4 to 7 40.3
8 to 11 18.6
12 or more 8.3
Number of residents in the household (mean and standard error) 3.1 (0.04)
Number of chronic diseases
Zero 28.3
One 33.5
Two or more 38.2
Impairment of activities
Transfer 15.7
Dressing 12.7
Bathing 6.1
Ambulation 5.6
Going to the toilet 4.1
Eating 2.3
Number of impaired activities
Zero 76.8
One 12.7
Two 4.7
Three 2.1
Four 1.4
Five 1.2
Six 1.1
Difficulty in at least 1 activity of daily living
No 76.8
Yes 23.2
Total 100.0
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e Figure shows the distribution of the participants with impairment in the performance
of some ADL and the receipt or not of care. e receipt of help ranged among activities. e
lack of care was greater among persons who reported diculty in bathing and transferring.
Among the persons who identied a primary caregiver, most were cared for by a woman
(72.1%). e mean age of caregivers was 48 years; most of them were married, a family
member, unpaid, and did not receive care training (Table 4). Among the caregivers, most
men provided care to women, while only 53.1% of women cared for other women. Rega rding
marital status, most female caregivers (61.2%) were married.
Regarding to the age group of the caregivers, it was highlighted the presence of older adults
(26.1%), of wh ich 57.3% were women and 2.3% were older than 80 yea rs. It wa s also obser ved
Table 2. Prevalence and prevalence ratio of the study participants ( 50 years) according to
sociodemographic characteristics and impairment of activities of daily living (ADL). Brazilian Longitudinal
Study of Aging (ELSI-Brazil), 2015–2016. (n = 9,412)
Characteristics Difficulties in ADL Adjusted
PR 95%CI p
No Yes
Sex
Male 79.4 20.6 1.00
Female 74.6 25.4 1.05 0.96–1.14 0.246
Age (in years)
50–59 80.0 20.0 1.00
60–69 78.2 21.8 0.89 0.78–1.01 0.090
70–79 73.3 26.7 0.96 0.83–1.10 0.548
80 and over 57.3 42.7 1.45 1.28–1.66 < 0.001
Schooling (full years of study)
Zero 65.4 34.6 2.95 2.30–3.79 < 0.001
1 to 3 72.3 27.7 2.45 1.93–3.10 < 0.001
4 to 7 76.8 23.2 2.17 1.71–2.75 < 0.001
8 to 11 84.2 15.8 1.54 1.19–2.01 0.001
12 or more 90.0 10.0 1.00
Number of residents in the household (mean
and standard error) 3.1 (0.04) 3.2 (0.05) 1.02 (0.04) 0.99–1.14 0.060
Number of chronic diseases
0 to 1 84.9 15.1 1.00
2 or more 63.6 36.4 2.29 2.11–2.51 < 0.001
Total 76.8 23.2
Values with statistical significance are presented in bold.
Table 3. Distribution (%) of the study participants ( 50 years) with difficulty in activities of daily living
(ADL) according to sociodemographic characteristics and receipt of help. Brazilian Longitudinal Study
of Aging (ELSI-Brazil), 2015–2016. (n = 2,282)
Sociodemographic characteristics Receipt of help p
No need Yes No
Sex < 0.001
Male 61.8 32.6 5.6
Female 47.1 36.9 16.0
Age (in years) < 0.001
50–59 56.2 32.3 11.5
60–69 59.1 27.8 13.1
70–79 50.5 38.3 11.2
80 and over 33.9 55.8 10.3
Schooling (full years of study) 0.002
Zero 43.3 45.7 11.0
1 to 3 53.8 32.5 13.7
4 to 7 55.1 33.9 11.0
8 to 11 60.0 28.4 11.6
12 or more 60.9 26.0 13.1
Number of residents in the household (mean and
standard error) 3.1 (0.07) 2.5 (0.1) 3.5 (0.07) 0.045
Number of chronic diseases < 0.001
0 to 1 59.8 30.2 10.0
2 or more 48.6 38.5 12.9
Impairment of ADL 53.1 35.1 11.8
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that 6.9% (n = 58) of the caregivers were under 18 years of age, 15.9% of whom were children
aged between six and 12 years (data not shown in the Table).
A quarter of the caregivers reported to have left work or school to perform this role. Most
caregivers (77.8%) reported working as caregivers the whole week. Only 6.1% of them reported
having received some ca re train ing. ey did it for 17.1 (SD = 4. 3) hou rs on average (Table 4).
Table 4. Distribution (%) of primary caregivers according to sociodemographic and care characteristics.
Brazilian Longitudinal Study of Aging (ELSI-Brazil), 2015–2016. (n = 828*)
Primary caregiver Total Women Men p
Sociodemographic characteristics
Sex 100.0 72.1 27.9 < 0.001
Mean age (standard error) in years 48.1 (0.9) 47.4 (0.9) 50.1 (1.8) 0.146
Marital status
0.052
Married 61.4 61.2 61.9
Single 29.2 27.6 33.4
Separated/Divorced 6.1 6.8 4.3
Widow/Widowed 3.3 4.4 0.4
Education level (can read and write a message) 86.4 86.7 85.6 0.692
Characteristics related to care
Sex of the care recipient < 0.001
Male 37.9 46.9 14.6
Female 62.1 53.1 85.4
Type of caregiver, according to kinship 0.382
Family 94.1 93.5 95.5
Not family 5.9 6.5 4.5
Type of caregiver, according to remuneration 0.004
Informal 90.8 88.7 96.4
Formal 9.2 11.3 3.6
Stopped working/studying to be able to care (yes) 25.8 30.2 14.5 < 0.001
Received specific training as caregiver (yes) 6.1 6.4 5.3 0.654
Training received - mean (standard error) in hours 17.1 (4.3) 20.6 (5.0) 5.7 (2.3) 0.014
Number of weekly days used for the care of the interviewee < 0.001
Everyday 77.8 81.8 67.2
Every day except weekends and holidays 1.9 2.5 0.4
Most days of the week 8.5 7.6 10.8
At least one day per week 11.8 8.1 21.6
Total 100.0 72.1 27.9
* Two caregivers did not present data.
Values with statistical significance are presented in bold.
Figure. Distribution (%) of the study participants ( 50 years) with difficulty in activities of daily living,
according to impaired activities and receipt of help. Brazilian Longitudinal Study of Aging (ELSI-Brazil),
2015–2016. (n = 2,282)
Transfer Dressing Bathing Moving in
a room
Going to the toilet Eating
No need for help Receipt of help No receipt of help
63.6
44.4
34.0
46.8 38.9 48.0
24.7
45.0
52.7
44.6 51.9
46.2
11.7 10.6 13.3 8.6 9.2 5.8
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
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DISCUSSION
Care refers to a set of specic activities combined in a complex life-sustaining network
that involves self-care, caring for others, the caregiver, and the care recipient10. It usually
occurs in domestic spaces, being unpaid11. In many countries, the responsibilities for
the informal care of fragile family members (older adults, children, the sick, and persons
with disabilities) are disproportionately distributed among certain social groups, such
as middle-aged women12.
It was estimated with ELSI-Brazil data in approximately 12.5 million persons the number of
individuals aged 50 years or older that had some diculty in at least one ADL. In addition,
these data conrm that the demand for care is higher among very old persons, those less
educated, and women.
However, the increased need for care by the Brazilian aged population occurs together with
changes in the social role of women, with their increased participation in labor market10,11,13.
In addition, in relation to gender equality, there is a remarkable distance between what is
intended (sharing of the responsibilit y to suppor t the family and ta k ing ca re of its member s)
and what is done1,14, which may further compromise the quality of the care.
In one of the few studies conducted in Brazil that have investigated informal and paid
care, Lima-Costa et al.2 have estimated that, among the older adults who received help
to perform at least one of the 10 selected activities, men were less likely to receive any
ty pe of care ( informal, paid, or mixed), regardless of other demographic characteristics.
However, according to data of the ELSI-Brazil, although they require less care, men
receive more help than women which may reect a macho behavior in the Brazilian
society1 –, as almost twice as many women had to stop working or studying for the care
compared to men.
ese dierent views on long-term care, in addition to gender stereotypes, permeate
institutional and political factors resulting in great variation in the situations of care for
men and women in dierent cultures10 –14. Unpaid work – as in the case of care provided
in the domestic environment – remains in a gray area7,10,15 while paid work, considered
economically productive, is a privileged category of economic and social analysis13.
Data from the European Social Survey (2014) show that 34.3% of the adult population worked
as informal caregivers in 20 European countries and 7.6% of the caregivers were considered
as intensive, since they worked at least 20 hours per week14. Although it was not possible to
measure the number of hours/day with the ELSI-Brazil data, almost 80% of the caregivers
reported working the whole week or most days of the week.
e family responsibility for the care of dependent members assumes that caregivers,
especially women, do not have nancial or emotional costs when providing care10,13,15,16.
However, despite the great and undeniable benets both in the public and private contexts,
continuously taking care of someone generates time and money costs and causes loss of
opportunities, especially in the labor market, and creates health risks, social isolation, and
discouragement of reproduction, among other factors.
In addition, despite the recognized need for some support for the family caregiver 10,14,16-
18, the formal support network is still very restricted. In Europe, care was more prevalent
among women aged 50–59, unemployed ones, especially those who do household chores, and
religious persons19. In Brazil, although domestic workers – lay workers and without a specic
care qualication have historically also taken care of dependent family members15, the
participation of this category was quite unimpressive in the studied population. e number
of training hours received is noteworthy – it is much less than anticipated by any orientation
or training course for caregivers20. In addition, for the rst time, the hired caregiver appears
as the third option among care agents, which requires the understanding of that this work
needs to be transformed into a qualied profession to contribute to the care quality.
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e act of caring is a stressful experience that can aect the physical and mental health of
the caregiver18, despite their health conditions12 ,13,16 and their moment at the course of life.
e relationship of the caregiver with a dependent person reduces their chances of keeping a
healthy li fe, deprive s them of socia l contacts, compromises thei r physical and psychological
well-being17,18 , and also exposes them to long-term care (LTC).
In 2015, an International Labor Organization study on LTC coverage for older adults in
46 countries pointed out that informal care for dependent older adults is very common
in most evaluated countries. It also points out that this model is not sustainable, mainly
because potential informal caregivers are also aging21. e “Innovating care for people
with multiple chronic conditions” (ICARE4EU) survey has assessed the characteristics
of various types of integrated care providers and services in 28 countries of the European
Union, Iceland, Switzerland, and Norway. Of the 112 practices investigated, 26.8% included
informal careg iver s , who work ed as co-care prov iders, and 19.6% included such careg ivers as
care co-clients. e main elements of the person-centered care are the active participation
of patients – in the denition of the care they will receive, the decision making about the
ca re prov ided, and the sel f-care –, the involvement of in for mal caregivers, and the prov ision
of coordinated multidisciplinary care22.
In Latin America and Brazil, however, the responsibility for looking after dependent persons
is placed primarily on the family. e Government has a subsidiary role: its responsibility is
only with olders without family and those economically deprived. is excludes provision of
care to those in the middle classes 23. However, this model also does not take into account
a crucial problem: what is the real capability of the families in providing the care needed?
is scenario exposes two groups that are potentially vulnerable to social security: persons
who are dependent for self- c a re, as they are li kely out of productive life, and fam i ly members
who are not paid to be caregivers as a third of these persons stopped working or studying
for this objective. As a result, family caregivers will remain unqualied for the labor market,
will not be able to contribute to social security, will have impaired their professional life,
and wi ll not have any ty pe of support to cont i nue ca r ing for other s. is unfavorable contex t
compromises the future care of these persons.
At the same time, the proportion of non-older adults who demand help with self-care is
threatening. When this middle generation requires care, older or younger individuals need
to provide it. Despite this, there are persons who currently demand care and are not getting
the proper help.
Despite the fact that persons are living longer and enjoying better health conditions, the
International Labor Organization (2015) estimates that the LTC needs of older adults are
unknown in most of the 46 countries investigated. For most of these countries, the ILO
has set a relative threshold of USD 1.461,80 purchasing power parity for the LTC of older
adults. According to the report, in Brazil, among the indicators investigated in relation to
the percentage of the population aged 65 years and over, the decit in the legal coverage of
LTC was 100%. e public spending on long-term care facilities for older adults per person
aged 65 and over, as a percentage of GDP per capita in 2013, was 0 (zero); public spending on
LTC, as a percentage of GDP, in the 2006-2010 average was 0 (zero); the dierence between
coverage and uncovered percentage of the population aged 65 years and over because of a
lack of nancial resources was 100%; the number of formal workers of LTC per 100 persons
aged 65 and over was 0 (zero). It is estimated that the coverage gap, that is, the percentage
of the population not covered because of the lack of formal LTC workers (relative threshold:
4. 2 workers per 100 pers ons aged 65 yea r s and over), would be 100%. us, the count r y would
require more than 650,000 formal caregivers to ll the gap of LTC. However, only the oer
of formal caregivers does not set up a LTC policy19.
According to the World Healt h Orga nization (W HO)24, “thinking about a LTC policy for the
Brazilian older population means thinking, rst and foremost, about ensuring the access of
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all older citiz ens to such ca re as a social right” (p. 343). Considering the results of this study,
the reection on future perspect ives for Bra zil25 means building care policies for persons of
all ages. Camarano asks: “would this be a new social risk to be taken”13?
e WHO projections point to a 400% increase in demand for LTC for the older population
liv ing in developing cou ntries , including Brazil24. It is estimated with ELSI-Brazil data that the
lack of proper care reaches approximately 1.5 million persons among those aged 50 and over.
Caring for a growing population is a challenge and a necessity for which the country has not
prepared itself. To face the reality in place, the country needs to be aware of this situation
and run against time25. Nevertheless, in Brazil, the debate around LTC nds resistance, not
only because of its proximity to subjects considered taboo, such as di sease, dis abilit y, frailty,
old age, and death, but also because of contradictions between models and conceptions
about the roles that the Government should have as a provider of welfare for its population26,
especially in times of political and scal crisis.
e results of this study are important because it is the rst Brazilian population-based study
to reveal the dyad involved in the care of persons with ADL dependency, the real demands,
and the gaps in the care provision. However, there are limitations: the cross-sectional
design of the study allows us to demonstrate an association between the phenomena
studied, but no causal relationship can be inferred. Another limitation is the fact that the
data are based exclusively on the self-report of the interviewees, which can be inuenced
by environmental, physical, social, and psycho-emotional factors. e continuation of the
longitudinal research may better determine the behavior of the care demand and supply
in the Brazilian population aged 50 years and over.
We must reect on the excessive condence that the Brazilian Government places on the
family caregiver while ignoring the physical, emotional, and nancial burden that the
permanent care of persons in situations of dependency imposes. It is expected a reduction
in the supply of family caregivers. ere is an urgent need to place this matter on the agenda
of Brazilian public policies, recognizing it as the fourth pillar of social security26.
In the perspective of a growing crisis of what is termed “family insuciency,” the answer
should be the recognition of care as part of the human condition. is will require the
involvement of the family, government, and society in the broader understanding that
successful aging will not be able to exclude the possibility of disability and need for care27.
at is why, in our view, it would not be correct to speak of family insuciency, but rather of
insucient care policies that support families in their need to care for themselves. e LTC
must be eectively materialized through the strengthening of the Brazilian Unied Health
System (SUS) and the Unied Social Assistance System (SUAS), as well as the compliance
with the various constitutional and infraconstitutional rules that ensure the right to care
for all Brazilians.
e support of the caring family means understanding care as a transverse dimension of
the health and well-being of the population, which requires the sharing of tasks between
genders and generations and dignity in the care oered to persons of all ages.
CONCLUSIONS
In Brazil, similar to what occurs in most countries – including those that have always
assigned to the family the main role in the care of older adults, such as Japan –, the greater
demand for care is followed by the decreased potential supply of family caregivers given
the changes in family prole and the role of women. Women are the main caregivers and
at the same time the most vulnerable among the segments that demand care.
erefore, it is up to the Brazilian Government to consider the demographic reality and be
the driving force capable of providing an intersectoral and integrated LTC policy, and to
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https://doi.org/10.11606/S1518-8787.2018052000650
anticipate the care needs that extrapolate health ones. is includes regulating the caregiver
profession and protecting the family caregiver and care recipient, as well as developing
strategies for the prevention and recovery of disability and frailty over the life course.
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Funding: e ELSI-Brazil baseline study was supported by the Brazilian Ministry of Health (DECIT/SCTIE –
Department of Science and Technology from the Secretariat of Science, Technology, and Strategic Inputs (Grant
404965/2012-1); COSAPI/DAPES/SAS – Healthcare Coordination of Older Adults, Department of Strategic and
Programmatic Actions from the Secretariat of Health Care) (Grants 20836, 22566, and 23700) and the Brazilian
Ministry of Science, Technology, Innovation, and Communication.
Authors’ Contribution: Design and planning of the project: KCG, YAOD, AAC. Data analysis and interpretation:
KCG, YAOD, AAC, DPN, DF. Writing of the study: KCG, YAOD, AAC, DPN, DF. Critical review of the study: KCG,
YAOD, AAC. Final review of the study: KCG, YAOD, AAC. All authors assume public responsibility for the content
of the article.
Conflict of Interest: e authors declare no conict of interest.
... No presente estudo, a maioria dos cuidadores avaliados foram mulheres com idade de 50 anos ou mais, características semelhantes ao que é encontrado em outros estudos sobre a temática [22][23][24][25] . Quanto a isso, cuidadores de meia idade como esses podem ter comprometimento de suas reservas funcionais, o que pode abalar, de forma involuntária, o cuidado que é prestado ao idoso 24 . ...
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Aims: Motivated by ageing populations, healthcare policies increasingly emphasize the role of informal care. This study examines how prevalence rates of informal caregivers and intensive caregivers (i.e. those who provide informal care for at least 11 hours a week) vary between European countries, and to what extent informal caregiving and intensive caregiving relate to countries' formal long-term care provisions and family care norms. Methods: Multilevel logistic regression analyses on data from the European Social Survey Round 7 ( n = 32,894 respondents in n = 19 countries) were used to test (a) contradicting hypotheses regarding the role of formal long-term care provisions based on crowding-out, crowding-in and specialization arguments and (b) the hypothesis that strong family care norms are positively related to (intensive) informal caregiving. Results: Prevalence rates of informal caregiving varied between European countries, from 20% to 44%. Intensive caregiving ranged from 4% to 11%. Opposite patterns regarding the role of formal long-term care provisions were revealed: generous long-term care provisions in a country were related to a higher likelihood of providing informal care, but a lower likelihood of providing intensive care. Moreover, intensive caregiving was more likely when family care norms in a country were strong. Conclusions: This study provided support for the specialization argument by showing that generous formal long-term care provisions crowded-out intensive caregiving, but also encouraged more people to provide (some) informal care. Because especially intensive caregiving is burdensome, low levels of formal long-term care provisions might bring risks to caregivers' well-being and healthcare systems' sustainability.
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Background: Reliable estimation of future trends in life expectancy and the burden of disability is crucial for ageing societies. Previous forecasts have not considered the potential impact of trends in disease incidence. The present prediction model combines population trends in cardiovascular disease, dementia, disability, and mortality to forecast trends in life expectancy and the burden of disability in England and Wales up to 2025. Methods: We developed and validated the IMPACT-Better Ageing Model—a probabilistic model that tracks the population aged 35–100 years through ten health states characterised by the presence or absence of cardiovascular disease, dementia, disability (difficulty with one or more activities of daily living) or death up to 2025, by use of evidence-based age-specific, sex-specific, and year-specific transition probabilities. As shown in the English Longitudinal Study of Ageing, we projected continuing declines in dementia incidence (2·7% per annum), cardiovascular incidence, and mortality. The model estimates disability prevalence and disabled and disability-free life expectancy by year. Findings: Between 2015 and 2025, the number of people aged 65 years and older will increase by 19·4% (95% uncertainty interval [UI] 17·7–20·9), from 10·4 million (10·37–10·41 million) to 12·4 million (12·23–12·57 million). The number living with disability will increase by 25·0% (95% UI 21·3–28·2), from 2·25 million (2·24–2·27 million) to 2·81 million (2·72–2·89 million). The age-standardised prevalence of disability among this population will remain constant, at 21·7% (95% UI 21·5–21·8) in 2015 and 21·6% (21·3–21·8) in 2025. Total life expectancy at age 65 years will increase by 1·7 years (95% UI 0·1–3·6), from 20·1 years (19·9–20·3) to 21·8 years (20·2–23·6). Disability-free life expectancy at age 65 years will increase by 1·0 years (95% UI 0·1–1·9), from 15·4 years (15·3–15·5) to 16·4 years (15·5–17·3). However, life expectancy with disability will increase more in relative terms, with an increase of roughly 15% from 2015 (4·7 years, 95% UI 4·6–4·8) to 2025 (5·4 years, 4·7–6·4). Interpretation: The number of older people with care needs will expand by 25% by 2025, mainly reflecting population ageing rather than an increase in prevalence of disability. Lifespans will increase further in the next decade, but a quarter of life expectancy at age 65 years will involve disability. Funding: British Heart Foundation.
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