Men as informal caregivers of dependent older adults in Brazil

Girliani Silva de Sousa Maria Cecília de Souza Minayo Raimunda Magalhães da Silva Stela Nazareth Meneghel Roger Flores Ceccon About the authors

Abstract

The objective of study was to understand the motivations and implications of care given by men for dependent elderly family members. Qualitative research happened between July and December 2018 in six cities in the five Brazilian regions, interviewing 11 men who perform tasks as informal caregivers. The men assumed this task because the women’s exhaustion and sickness, added to affective and marital reciprocity. Their sons expressed discomfort in taking personal care of their parents, while the spouses had difficulties with domestic activities. Lonely caregivers were tired, in pain, sleep deprived, experiencing depressive symptoms and loneliness. Support provided by family members and formal caregivers proved to be valuable in alleviating the suffering of caregivers who were reluctant to ask for help. Health professionals are called to pay attention to informal care providers for family members.

Keywords
Frail elderly; Gender role; Masculinity; Men’s health; Caregivers


Introduction

According to the World Health Organization11 World Health Organization. World Health Organization 10 facts on ageing and health. Genebra: WHO; 2017. the proportion of the over-60 years old world’s population is forecasted to almost double between 2015 and 2050, going from 12% to 22%. It is expected that there will be a need to increase care for the elderly. The reason of this call for increased attention is due to the fact that, although the majority of this age group is made up of healthy and independent people, the frequency of chronic physical or mental illnesses is increasing, and with it the need for help from others.

Informal care is unpaid care provided by family members, friends or volunteers. Presently, informal caregivers play a crucial role in all societies, and in Brazil they make up the largest group of those who assist people with chronic and disabling illnesses, frailty and dependency. Both national22 Batista CF, Bandeira M, Oliveira DR. Fatores associados à sobrecarga subjetiva de homens e mulheres cuidadores de pacientes psiquiátricos. Cien Saude Colet. 2015; 20(9):2857-66. doi: 10.1590/1413-81232015209.03522014.
https://doi.org/10.1590/1413-81232015209...
,33 Sousa GS, Silva RM, Reinaldo MAS, Soares SM, Gutierrez DMD, Figueiredo MLF. “We are humans after all”: family caregivers’ experience of caring for dependent older adults in Brazil. Cien Saude Colet. 2021; 26(1):27-36. doi: 10.1590/1413-81232020261.30172020.
https://doi.org/10.1590/1413-81232020261...
and international44 Greenwood N, Smith R. The oldest carers: a narrative review and synthesis of the experiences of carers aged over 75 years. Maturitas. 2016; 94:161-72. doi: 10.1016/j.maturitas.2016.10.001.
https://doi.org/10.1016/j.maturitas.2016...
,55 Del-Pino-Casado R, Pastor-Bravo MM, Palomino-Moral PA, Frias-Osuna A. Gender differences in primary home caregivers of older relatives in a Mediterranean environment: A cross-sectional study. Arch Gerontol Geriatr. 2017; 69:128-33. doi: 10.1016/j.archger.2016.11.012.
https://doi.org/10.1016/j.archger.2016.1...
research has shown that informal caregivers do voluntary, non-stop work that causes exhaustion, muscle pain, hypertension, burnout, depressive symptoms, loneliness, social isolation and sleeping problems22 Batista CF, Bandeira M, Oliveira DR. Fatores associados à sobrecarga subjetiva de homens e mulheres cuidadores de pacientes psiquiátricos. Cien Saude Colet. 2015; 20(9):2857-66. doi: 10.1590/1413-81232015209.03522014.
https://doi.org/10.1590/1413-81232015209...

3 Sousa GS, Silva RM, Reinaldo MAS, Soares SM, Gutierrez DMD, Figueiredo MLF. “We are humans after all”: family caregivers’ experience of caring for dependent older adults in Brazil. Cien Saude Colet. 2021; 26(1):27-36. doi: 10.1590/1413-81232020261.30172020.
https://doi.org/10.1590/1413-81232020261...

4 Greenwood N, Smith R. The oldest carers: a narrative review and synthesis of the experiences of carers aged over 75 years. Maturitas. 2016; 94:161-72. doi: 10.1016/j.maturitas.2016.10.001.
https://doi.org/10.1016/j.maturitas.2016...
-55 Del-Pino-Casado R, Pastor-Bravo MM, Palomino-Moral PA, Frias-Osuna A. Gender differences in primary home caregivers of older relatives in a Mediterranean environment: A cross-sectional study. Arch Gerontol Geriatr. 2017; 69:128-33. doi: 10.1016/j.archger.2016.11.012.
https://doi.org/10.1016/j.archger.2016.1...
.

The gender concept is a way of understanding the processes of construction and reconstruction of the social organization of the relationship between men and women in society66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.,77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.. Throughout history, the act of caring, whether for children, for handicapped or sick family members, has been considered a female attribution and continues to be so under the capitalist regime in contemporary times66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.. We must direct our attention to the “crisis of care”, which refers to the lack of unpaid labor done by women who are increasingly present in the labor market and, despite this, it is women who continue to do the majority of care work77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.,88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
. In spite of this, men are also caregivers. This article looks at their experience. The traditional division of roles, linked by gender socialization66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.

7 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.
-88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
and also by structural male sexism, in which domestic work is not the man’s responsibility and he is the sole family breadwinner, is broken by those who take on the care of their parents and spouses.

While the feminization of care has been debated from a political, sociological and economic point of view66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.

7 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.
-88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
, men as informal caregivers for the elderly are still not quite visible in Brazil. A quick search in the Virtual Health Library using the Portuguese descriptors “masculinidade” (masculinity) and “cuidador familiar” (family caregiver) found only one Brazilian article on this subject99 Moherdaui JH, Fernandes CLC, Soares KG. O que leva homens a se tornar cuidadores informais: um estudo qualitativo. Rev Bras Med Fam Comuni. 2019; 14(41):1907. doi:10.5712/rbmfc14(41)1907.
https://doi.org/10.5712/rbmfc14(41)1907...
, demonstrating the relevance of the study of this topic.

It is key to make visible the care provided by men to dependent family members, to identify the impact of this activity on male identity1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
and to understand that this task can produce satisfaction and transformations, but also entails suffering and vulnerabilities. By delving deeper into the other forms of masculinity that are produced interactively in the exercise of care, it is possible to think of strategies to overcome the barriers to access, and visibility of male caregivers in health services99 Moherdaui JH, Fernandes CLC, Soares KG. O que leva homens a se tornar cuidadores informais: um estudo qualitativo. Rev Bras Med Fam Comuni. 2019; 14(41):1907. doi:10.5712/rbmfc14(41)1907.
https://doi.org/10.5712/rbmfc14(41)1907...
. Against this backdrop, the present article aims to understand the motivations and implications for the lives of men who care for dependent family members.

Method

This is a qualitative study, guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ) and based on dialectical hermeneutics1111 Gadamer HG. Verdade e método. 3a ed. Petrópolis: Vozes; 1999. ,1212 Habermas J. Dialética e hermenêutica: para a crítica da hermenêutica de Gadamer. Porto Alegre: L± 1987.. According to Gadamer1111 Gadamer HG. Verdade e método. 3a ed. Petrópolis: Vozes; 1999. , hermeneutics is about understanding meanings through communication between human beings, with language at its core. Following Habermas1212 Habermas J. Dialética e hermenêutica: para a crítica da hermenêutica de Gadamer. Porto Alegre: L± 1987., dialectics looks for the obscure and contradictory nuclei in facts, language, symbols and culture, which allow them to be criticized.

This article is part of the results of a multicenter study1313 Minayo MCS, Figueiredo AEB. Manual de pesquisa: estudo situacional dos idosos dependentes que residem com suas famílias visando a subsidiar uma política de atenção e de apoio aos cuidadores. Rio de Janeiro: Fundação Oswaldo Cruz; 2019. doi: 10.48331/scielodata.8NEDAK.
https://doi.org/10.48331/scielodata.8NED...
carried out in six cities belonging to the five Brazilian regions: Belo Horizonte (MG) and Rio de Janeiro (RJ) in the southeast; Porto Alegre (RS) in the south; Manaus (AM) in the north; Fortaleza (CE) in the northeast and Brasília (DF) in the center-west. The survey took place from July to December 2018. To select the participants, the study consulted physicians, nurses and community health workers (CHWs) from the Family Health Strategy (FHS) as well as geriatric outpatient clinics, in order to ascertain their eligibility. A total of 64 family caregivers were consulted, 11 of whom were men. The individuals selected had to be the main legal family caregiver, responsible for caring for an elderly family member aged 60 or over who was dependent for at least six months. Male caregivers with cognitive impairment, confirmed in their medical records or by one of the health professionals mentioned above, were excluded.

Information on the situation of the caregivers was obtained at home using an interview script validated in a participatory workshop attended by 13 researchers involved in the larger study1313 Minayo MCS, Figueiredo AEB. Manual de pesquisa: estudo situacional dos idosos dependentes que residem com suas famílias visando a subsidiar uma política de atenção e de apoio aos cuidadores. Rio de Janeiro: Fundação Oswaldo Cruz; 2019. doi: 10.48331/scielodata.8NEDAK.
https://doi.org/10.48331/scielodata.8NED...
. Researchers with experience in qualitative research carried out the interviews with the help of assistants trained in the subject of dependency in ageing and how to enter homes, talk to people and respect ethical principles in communication.

The health professionals contacted the participants by telephone to arrange the interviews on the best day and at the best time. Initially, the Free and Informed Consent Form (FICF) was read out to the participants, guaranteeing their anonymity, non-judgement of their accounts and authorization for the interviews to be recorded. A few questions were asked about sociodemographic data, followed by the motivations and circumstances surrounding becoming a caregiver; care routines and their challenges; changes in the daily lives of caregivers and the implications for their lives. The interviews lasted 30 minutes.

The interviews were transcribed and analyzed using the content analysis technique1414 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 14a ed. Rio de Janeiro: Hucitec; 2014.. The analysis process was carried out independently by the researchers, who met later to review, decide, validate and reach consensus on the core meanings, themes and categories. The process consisted of: careful and exhaustive reading of each interview, in which we tried to identify and code relevant phrases/paragraphs that pointed to men’s perceptions of becoming caregivers and the aspects of masculinity that have implications for the care routine and for their lives. Charts were drawn up for each participant in Microsoft Word format, containing notes indicating the core meanings, emerging themes and illustrative reports. Afterwards, the researchers read through all the tables and tried to group and regroup the themes and content of all the interviews, taking into account similarities, particularities and the inference of their importance to the interviewees. In classifying the themes, three categories emerged: “Circumstances that led men to assume caring for dependent elderly people”; “Daunting task: the beginning of caring for dependent elderly people”; “Implications of caring for men’s lives”. The reports were interpreted and analyzed by the researchers and articulated with the relevant national and international literature on the subject, and the theoretical references on gender.

The study was cleared by the Ethics Committee for Research with Human Beings No. 1.326.631. To guarantee their anonymity, the participants were identified by the letter “H” for man, numbered according to the order in which they were interviewed, and identified according to age, marital status, gender, length of time as a caregiver and municipality of residence.

Results

Within the group of male caregivers, seven were sons of the elderly and four were husbands. The sons’ ages ranged from 40 to 54 years old. Among the husbands, the age ranged from 70 to 75 years old. All the sons were single or divorced and had no children of their own. With regard to work, three were unemployed, two had given up work and become self-employed and two continued working and relied on formal and family caregivers. Most lived with the elderly person. Three sons moved in with their parents after they fell ill. The caregiver spouses were retired. Four sons looked after their mothers and three looked after their fathers. The husbands looked after their wives.

The need for regular care requires decisions to be made about who will carry out this task. The interviews conducted with the men made them remember and rethink this experience, which required them to adapt their life plans.

Circumstances involved in the decision to become a caregiver

According to the interviewees, the circumstances that led those men to become caregivers were: exhaustion, overload and the illness of the women in the family who were no longer able to carry out this activity; the lack of women in the family willing to assume this role; the lack of financial means to pay for formal caregivers; and a sense of responsibility towards elderly relatives. This is highlighted by some of the statements below.

My niece got a baby boy, she couldn’t look after her, there’s my sister who lives in Serra, but she has a little boy too. I don’t have another relative nearby who can look after her. I said I’m going to quit this job to look after her, I’m not going to let her get sick, I’m going to stay until God wants me to look after her.

(H1, 40 years old, single, looks after his mother who has been bedridden by a stroke for three years, Belo Horizonte/MG)

Another factor mentioned was unemployment, in which the withdrawal from the job market made some men available for care. According to one of the interviewees, they left their jobs for their own reasons. In other cases, it was through dismissal.

I was made redundant, got depressed and couldn’t return to the job market, so I took on the role of main family caregiver. My sister also got married, so we lived alone [me and my father].

(H7, 45, single, has been caring for his father with walking problems for six years, Brasília/DF)

With regard to the husband-and-wife caregivers, the distance of the house from other family members, the perception that the children have their own families and marital responsibility placed them in the role of main caregiver.

There’s no one else, the daughter who could look after her works, has her family, has her house. It’s my responsibility, now it’s me and her.

(H6, 67, married, has been caring for his wife with Parkinson’s for 4 years, Manaus/AM)

All the men said that caring for a dependent family member was not a burden. It was a moral responsibility and a form of reciprocity for the loving relationship they had with the family member over the years.

Other friends who have had this kind of experience have left. It’s the kind of thing we don’t want for her at all, for everything she’s done for us, all the time we’ve been married, we’re going to be 50 next year.

(H4, 76, married, caring for his wife with chronic pain and totally dependent for five years, Porto Alegre/RS)

A daunting task: the beginning of care

The interviewees carried out the elderly person’s personal care and household activities. Some received help from family members with domestic activities and personal care. The sons who took care of their mothers said that they initially felt ashamed and afraid to see their naked bodies when bathing, changing diapers and doing laundry.

I take care of her, I make lunch, I feed her every three hours, but the bath needs my sister to be here, or she goes to the bathroom, sits there in the little chair, I help her take off her nightgown, she takes her bath in the shower, when it’s time to dry off, she calls me, but I don’t get to see her naked, she gets on her back and I help her get dressed.

(H2, 64 years old, son has been taking care of his mother with stroke sequelae and totally dependent for eight years, Fortaleza/CE)

The older men commented on the difficulty they had in adapting to everyday life in order to carry out tasks they weren’t used to doing, such as preparing meals and reconciling household chores with caring for the elderly.

At first, I had a hard time, I kept trying to guess if she was dirty, if she was clean, what I had to do, what food I had to give her, how I did it, it took her a while to get used to food, but then things got into a routine and now I know everything.

(H3, 75 years old, full caregiver for wife with Alzheimer’s and totally dependent for two years, Belo Horizonte/MG)

Implications of caring in men’s lives

The men reported different levels of suffering and physical and psychological ailments as a result of caring. Above all, they described physical and mental fatigue as a result of having to help their frail family members get around and dealing with sleep deprivation due to the demands of the dependent person.

Tired and very sleepy, I can’t sleep properly, I sleep better when we go to the bedroom at two o’clock in the morning when she goes to bed and I can still sleep from two to four, when I wake up, she’s already calling me, moaning in pain, I don’t sleep anymore.

(H4, 76, married, has been caring for his wife with chronic pain and is totally dependent for five years, Porto Alegre/RS)

Some of these men’s life projects were interrupted by the illness of the elderly person. Especially in the case of men who are sole caregivers, there is no prospect of improvement in their condition. They have no leisure time, no space for themselves and little social contact. Care occupies their lives and they find it difficult to talk about their difficulties and needs. Some said that in the interview they had their first opportunity to speak and that they felt sad and lonely in the face of the routine that caring for their relative imposed on them.

I’m not living, I go home at night to sleep and in the morning I’m already here, I don’t have time to look after my things. I’m not bragging, but my niece doesn’t care about her [the elderly woman], I don’t have the courage to leave her alone, I’m the one who pays the most attention to her. I’m practically forgotten, what I’m going through is a very difficult situation.

(H2, 64 years old, son looking after his mother with stroke sequelae and totally dependent for eight years, Fortaleza/CE)

Very few men have managed to adapt in order to reduce the workload generated by caring for a dependent person, creating a support network or hiring a formal caregiver for a few hours.

I have nothing to complain about, I’m aware that this is the reality today and I try to live as best I can. As the family is united, everyone helps each other, I managed to finish my Russian course, we travel, visit relatives and the farm has become the family’s second home.

(H9, has been caring for his wife with Alzheimer’s for six years, Brasília/DF)

At the weekend, I go to the beach, I go for a run, I do something. This weekend, I’m going to Búzios and my sister is taking Mom to spend the weekend with her.

(H8, 59, son who has been looking after his mother with stroke sequelae for five years, Rio de Janeiro/RJ)

Younger men reported missing work, others tried to reconcile work with the demands of care and relied on the help of formal caregivers:

[...] the day came for me to return to work, I got this other person to help, that’s when I was able to work more calmly.

(H10, 53 years old, has been caring for his father with a fractured femur for six months, Rio de Janeiro/RJ)

Some have opted for outsourced jobs, such as assistant and delivery man for the Ifood app, and don’t rely on formal caregivers.

I miss work, but since I’m not working in my field, I work at Ifood. I deliver from 18:00 until 23:15. At night, she’s more relaxed, she’s at home, watching TV. During the day, I just look after her.

(H5, 40, has been looking after her mother for three years, who has difficulty walking due to a fractured femur, Belo Horizonte/MG)

The finitude of life was a present topic in the interviews with the caregivers. The men reported fear of falling ill and dying, leaving their loved ones abandoned. Some talked to family members, negotiating to share the tasks of care when they felt they were no longer physically able to continue caring for the dependent person. Others have no close family members to whom they can turn for help.

I ask God to take care of both of us, especially me, not to let me weaken. I ask him to take care of me, so that I can hold on to the boat because she can’t be alone. Every day, I say, “oh [my God], she can’t be alone, so give me a way”.

(H3, 75 years old, full care of wife with Alzheimer’s and totally dependent for two years, Belo Horizonte/MG)

Society’s view of male caregivers was a relevant topic in the interviews. Some sons, for example, feel devalued by those around them because they are not working: “I get annoyed with my neighbors and acquaintances for asking me why I’m not working” (H7, 45, single, has been caring for his father with locomotion problems for six years, Brasília/DF). But there are also some close people who value the affection and care that men offer their dependent family members.

Where I live, they give me compliments on the fact that I’m here with her [the elderly woman] doing things, they’re very happy. People outside are grateful to see a son caring for his mother.

(H5, 40 years old, has been caring for her mother who has difficulty walking due to a fractured femur for three years, Belo Horizonte/MG)

The male caregivers said that they would like guidance from health professionals on the best way to provide care. However, most of the interviewees had never sought support from health or social services. Some mentioned the support they receive from home visits by the family health team as essential, as they are unable to take the elderly person who is bedridden to the health services.

I find your study very interesting because it may shed some light on what we have to do. We’re groping in the dark, looking for guidance, seeing what we can do with people, looking for a medical team, how to do it, because we don’t have this idea. One day it suddenly falls into our laps and we feel unprepared.

(H10, 51 years old, son has been caring for his parents with stroke sequelae for 10 years, Porto Alegre/RS)

Discussion

The men interviewed in this study discussed the reasons why they took on the role of caregiver. In general, the sons are called in because the women in the family are exhausted, overburdened, ill and unable to continue in the role. In another cases, it happens because there are no women available in the family. Although male caregivers perform this task with dedication, their own statements indicate that according to traditional gender roles66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018. it is the woman’s job to look after their family members33 Sousa GS, Silva RM, Reinaldo MAS, Soares SM, Gutierrez DMD, Figueiredo MLF. “We are humans after all”: family caregivers’ experience of caring for dependent older adults in Brazil. Cien Saude Colet. 2021; 26(1):27-36. doi: 10.1590/1413-81232020261.30172020.
https://doi.org/10.1590/1413-81232020261...

4 Greenwood N, Smith R. The oldest carers: a narrative review and synthesis of the experiences of carers aged over 75 years. Maturitas. 2016; 94:161-72. doi: 10.1016/j.maturitas.2016.10.001.
https://doi.org/10.1016/j.maturitas.2016...

5 Del-Pino-Casado R, Pastor-Bravo MM, Palomino-Moral PA, Frias-Osuna A. Gender differences in primary home caregivers of older relatives in a Mediterranean environment: A cross-sectional study. Arch Gerontol Geriatr. 2017; 69:128-33. doi: 10.1016/j.archger.2016.11.012.
https://doi.org/10.1016/j.archger.2016.1...
-66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.,1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
,1515 Mendes CFM, Santos AL. O cuidado na doença de Alzheimer: as representações sociais dos cuidadores familiares. Saude Soc. 2016; 25(1):121-32. doi: 10.1590/S0104-12902015142591.
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,1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
, which confirms the existence of unequal and asymmetrical relationships77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.,88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
. This fact keeps them invisible and often socially discriminated.

Therefore, regardless of the reasons that led male caregivers to dedicate themselves to this task, it is important to emphasize the extent to which care is a female responsibility in the sexual division of labor77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.,88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
in cis-heteropatriarchal societies, in which women do all the reproductive and family care work for free66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.

7 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.
-88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
,1717 Hirata H, Laborie F, Doaré H, Senotier D. Dicionário crítico do feminismo. São Paulo: Unesp; 2009.. Some caregivers were unemployed and others were retired. The latter were spouses who had lived with their wives all their lives. A smaller proportion had to quit their jobs to take on the role of caregiver. There was unanimity among the children about their sense of responsibility to care for their parents in old age99 Moherdaui JH, Fernandes CLC, Soares KG. O que leva homens a se tornar cuidadores informais: um estudo qualitativo. Rev Bras Med Fam Comuni. 2019; 14(41):1907. doi:10.5712/rbmfc14(41)1907.
https://doi.org/10.5712/rbmfc14(41)1907...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
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,1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
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. For husbands, the conjugal love bond and the care received from the woman who has looked after him all his life are the motivations for becoming and remaining caregivers66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.,99 Moherdaui JH, Fernandes CLC, Soares KG. O que leva homens a se tornar cuidadores informais: um estudo qualitativo. Rev Bras Med Fam Comuni. 2019; 14(41):1907. doi:10.5712/rbmfc14(41)1907.
https://doi.org/10.5712/rbmfc14(41)1907...
,1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,2020 Fee A, McIlfatrick S, Ryan A. ‘The care circle consists of me.’ Loneliness and social isolation for older male spousal caregivers. a qualitative study. Ageing Soc. 2021; 43(3):1-18. doi: 10.1017/S0144686X21000854.
https://doi.org/10.1017/S0144686X2100085...
,2121 Melo G. A experiência vivida de homens (cônjuges) que cuidam de mulheres com demência. Rev Bras Geriatr Gerontol. 2009; 12(3):319-30. doi: 10.1590/1809-9823.2009.00002.
https://doi.org/10.1590/1809-9823.2009.0...
. The idea of care as an act of affection and reciprocity, which goes far beyond an obligation, was unanimous among them77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.,1414 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 14a ed. Rio de Janeiro: Hucitec; 2014.,1515 Mendes CFM, Santos AL. O cuidado na doença de Alzheimer: as representações sociais dos cuidadores familiares. Saude Soc. 2016; 25(1):121-32. doi: 10.1590/S0104-12902015142591.
https://doi.org/10.1590/S0104-1290201514...
. In interpretative terms, the men did not mention in their experiences having received care in the affective77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012. and loving dimension from men in the family. One elderly caregiver exempted his children from this responsibility, saying that they had to look after their own families.

It should be acknowledged, however, that this reality does not mean the deconstruction of the ideals of hegemonic masculinity1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
, which conceives of gender relations as relations of power, with the female gender being historically subordinate to the male66 Butler J. Problemas de gênero: feminismo e subversão da identidade. 16a ed. São Paulo: Editora José Olympio; 2018.

7 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.
-88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
,1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
. However, these men represent a desirable cultural break. Caring masculinities refer to openness to the qualitative attributes of care77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.: affection, relationship, emotion and interdependence, integrating new values and practices into male identity2222 Hanlon N. Masculinities and affffective equality: love labour and care labour in men’s lives. In: Biricik A, Hearn J, editores. Proceedings from GEXcel Theme 2: deconstructing the hegemony of men and masculinities. Orebro: Institute of Thematic Gender Studies; 2009. p. 191-200.. Men’s affectivity in care should be seen as a form of resistance to the macho model and their engagement in the search for gender equality99 Moherdaui JH, Fernandes CLC, Soares KG. O que leva homens a se tornar cuidadores informais: um estudo qualitativo. Rev Bras Med Fam Comuni. 2019; 14(41):1907. doi:10.5712/rbmfc14(41)1907.
https://doi.org/10.5712/rbmfc14(41)1907...
,1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
. It should be noted, however, that this reality cannot be generalized; for example, experiences of violence and abuse in childhood affect men’s affective capacity to become caregivers1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
,2222 Hanlon N. Masculinities and affffective equality: love labour and care labour in men’s lives. In: Biricik A, Hearn J, editores. Proceedings from GEXcel Theme 2: deconstructing the hegemony of men and masculinities. Orebro: Institute of Thematic Gender Studies; 2009. p. 191-200.,2323 Connell RW, Messerschmidt J. Hegemonic masculinity: rethinking the concept. Gend Soc. 2005; 19(6):829-59. doi: 10.1177/0891243205278639.
https://doi.org/10.1177/0891243205278639...
. Additionally, it should be noted that the number of male caregivers is still very small compared to the number of female caregivers.

Traditional Brazilian masculine culture1717 Hirata H, Laborie F, Doaré H, Senotier D. Dicionário crítico do feminismo. São Paulo: Unesp; 2009.,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
shows that men report greater difficulty and discomfort in taking on domestic tasks and personal care for dependent people1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...

25 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...

26 Stefansdottir OA, Munkejord MC, Sveinbjarnardottir EK. Maintaining or letting go of couplehood: perspectives of older male spousal dementia caregivers. Scand J Caring Sci. 2022; 36(3):742-51. doi: 10.1111/scs.13035.
https://doi.org/10.1111/scs.13035...

27 Deskins BP, Letvak S, Kennedy-Malone L, Rowsey PJ, Bedini L, Rhew D. The experiences of african american male caregivers. Healthcare (Basel). 2022; 10(2):252-60. doi: 10.3390/healthcare10020252.
https://doi.org/10.3390/healthcare100202...
-2828 Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019; 7(2):72-80. doi: 10.3390/healthcare7020072.
https://doi.org/10.3390/healthcare702007...
. Domestic work and care in the material dimension, i.e. doing things, is still inferior and attributed to women, so for men to carry out these functions is to call into question male hegemony1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
and power relations in the material and technical work of care77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012., leading to think that it is still challenging to build the attributes of men who care and to reduce power inequalities between the genders77 Hirata H, Guimarães NA. Cuidado e cuidadoras: as várias faces do trabalho do care. Barueri: Editora Atlas; 2012.,88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
. This reality is different in countries like Portugal2121 Melo G. A experiência vivida de homens (cônjuges) que cuidam de mulheres com demência. Rev Bras Geriatr Gerontol. 2009; 12(3):319-30. doi: 10.1590/1809-9823.2009.00002.
https://doi.org/10.1590/1809-9823.2009.0...
and England1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
, where the spouses carried out domestic activities jointly, before the elderly women fell ill, either because they both work or because they chose to organize family life.

Elderly caregivers expressed fear of dying and leaving their wives helpless and abandoned. The notion of finitude made us pay attention to the singularities and diversities of the cultural, social and economic context that impose meanings on the lived experiences1111 Gadamer HG. Verdade e método. 3a ed. Petrópolis: Vozes; 1999. ,1212 Habermas J. Dialética e hermenêutica: para a crítica da hermenêutica de Gadamer. Porto Alegre: L± 1987. of elderly people caring for the elderly. For the German sociologist Elias, the phenomenology of finitude follows the very conceptualization of dying2929 Faria L, Santos LAC, Patino RA. A fenomenologia do envelhecer e da morte na perspectiva de Norbert Elias. Cad Saude Publica. 2017; 33(12):1-11. doi: 10.1590/0102-311X00068217.
https://doi.org/10.1590/0102-311X0006821...
. Thus, the social-historical context1111 Gadamer HG. Verdade e método. 3a ed. Petrópolis: Vozes; 1999. ,1212 Habermas J. Dialética e hermenêutica: para a crítica da hermenêutica de Gadamer. Porto Alegre: L± 1987. invites us to reflect on the social changes imposed on Latin American societies in which strong family-based bonds of solidarity are being broken by individuality and the solitary care offered by elderly caregivers is a new reality. There is a process of resistance and fear on the part of the elderly caregiver when faced with their own finitude and the helplessness that this can bring to the life of the dependent elderly person2929 Faria L, Santos LAC, Patino RA. A fenomenologia do envelhecer e da morte na perspectiva de Norbert Elias. Cad Saude Publica. 2017; 33(12):1-11. doi: 10.1590/0102-311X00068217.
https://doi.org/10.1590/0102-311X0006821...
. It must be recognized that the elderly caregivers are also fragile individuals, just as fragile and dependent on care as the elderly people they care for.

Regarding the implications of permanent care for the elderly in the lives of caregivers, it can be seen that, with two exceptions, these men have little or no help, which has a negative impact on their physical and mental health2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
,2525 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...
. Both children and spouses report tiredness, sleep deprivation, physical pain and sadness1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...
,2525 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...
,2828 Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019; 7(2):72-80. doi: 10.3390/healthcare7020072.
https://doi.org/10.3390/healthcare702007...
. Concurrent with the international literature1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,2626 Stefansdottir OA, Munkejord MC, Sveinbjarnardottir EK. Maintaining or letting go of couplehood: perspectives of older male spousal dementia caregivers. Scand J Caring Sci. 2022; 36(3):742-51. doi: 10.1111/scs.13035.
https://doi.org/10.1111/scs.13035...
,2727 Deskins BP, Letvak S, Kennedy-Malone L, Rowsey PJ, Bedini L, Rhew D. The experiences of african american male caregivers. Healthcare (Basel). 2022; 10(2):252-60. doi: 10.3390/healthcare10020252.
https://doi.org/10.3390/healthcare100202...
, men did not report depression; however, they were downcast, looked sad and some cried during the interview, especially when talking about the progression of their loved one’s illness and the uncertainties for the future1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
,2525 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...
,3030 Silva RP, Melo EA. Masculinities and mental distress: from personal care to fight against male sexism? Cien Saude Colet. 2021; 26(10):4613-22. doi: 10.1590/1413-812320212610.10612021.
https://doi.org/10.1590/1413-81232021261...
. Men’s mental suffering has been the subject of research over the last decade. It is a multidimensional phenomenon that involves the social and cultural context99 Moherdaui JH, Fernandes CLC, Soares KG. O que leva homens a se tornar cuidadores informais: um estudo qualitativo. Rev Bras Med Fam Comuni. 2019; 14(41):1907. doi:10.5712/rbmfc14(41)1907.
https://doi.org/10.5712/rbmfc14(41)1907...
,1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
, in which it is necessary to understand how attitudes traditionally perceived as masculine are inserted into the relationships that men establish with society. Men’s mental suffering is anchored in the traditional gender roles attributed to men: being a provider, showing strength, containing emotions, not talking about feelings or personal problems with friends or even seeking help from health professionals1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
,2525 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...
,3030 Silva RP, Melo EA. Masculinities and mental distress: from personal care to fight against male sexism? Cien Saude Colet. 2021; 26(10):4613-22. doi: 10.1590/1413-812320212610.10612021.
https://doi.org/10.1590/1413-81232021261...
,3131 Zanello V. Saúde mental, gênero e dispositivos: cultura e processos de subjetivação. 3a ed. Curitiba: Appris; 2018..

Spouse caregivers reported more social isolation and loneliness than sons that are caregivers. In the face of ageing, dependency and adult children leaving home, multiple losses occur. The loss of health of one of the spouses, the loss of work colleagues, the withdrawal of friends of the same age, the absence of conversations and shared interests with the spouses and the decline in social networks and opportunities for sociability1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...

19 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...

20 Fee A, McIlfatrick S, Ryan A. ‘The care circle consists of me.’ Loneliness and social isolation for older male spousal caregivers. a qualitative study. Ageing Soc. 2021; 43(3):1-18. doi: 10.1017/S0144686X21000854.
https://doi.org/10.1017/S0144686X2100085...
-2121 Melo G. A experiência vivida de homens (cônjuges) que cuidam de mulheres com demência. Rev Bras Geriatr Gerontol. 2009; 12(3):319-30. doi: 10.1590/1809-9823.2009.00002.
https://doi.org/10.1590/1809-9823.2009.0...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
,2626 Stefansdottir OA, Munkejord MC, Sveinbjarnardottir EK. Maintaining or letting go of couplehood: perspectives of older male spousal dementia caregivers. Scand J Caring Sci. 2022; 36(3):742-51. doi: 10.1111/scs.13035.
https://doi.org/10.1111/scs.13035...
. In addition, absence from work seems to lead to a situation in which caregiver spouses depend more on their wives for emotional support than the other way around2626 Stefansdottir OA, Munkejord MC, Sveinbjarnardottir EK. Maintaining or letting go of couplehood: perspectives of older male spousal dementia caregivers. Scand J Caring Sci. 2022; 36(3):742-51. doi: 10.1111/scs.13035.
https://doi.org/10.1111/scs.13035...
. Men who are sole caregivers are physically, emotionally and financially overburdened and lack the time to look after themselves22 Batista CF, Bandeira M, Oliveira DR. Fatores associados à sobrecarga subjetiva de homens e mulheres cuidadores de pacientes psiquiátricos. Cien Saude Colet. 2015; 20(9):2857-66. doi: 10.1590/1413-81232015209.03522014.
https://doi.org/10.1590/1413-81232015209...
,1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...
,2525 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...
,2626 Stefansdottir OA, Munkejord MC, Sveinbjarnardottir EK. Maintaining or letting go of couplehood: perspectives of older male spousal dementia caregivers. Scand J Caring Sci. 2022; 36(3):742-51. doi: 10.1111/scs.13035.
https://doi.org/10.1111/scs.13035...
,2828 Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019; 7(2):72-80. doi: 10.3390/healthcare7020072.
https://doi.org/10.3390/healthcare702007...
.

It is important to point out the forms of social privilege and disadvantage that intersect with gender and directly influence the coping strategies developed by men1515 Mendes CFM, Santos AL. O cuidado na doença de Alzheimer: as representações sociais dos cuidadores familiares. Saude Soc. 2016; 25(1):121-32. doi: 10.1590/S0104-12902015142591.
https://doi.org/10.1590/S0104-1290201514...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,2525 Bai X, Liu C, Baladon L, Rubio-Valera M. Multidimensional determinants of the caregiving burden among chinese male caregivers of older family members in Hong Kong. Aging Ment Health. 2018; 22(8):980-89. doi: 10.1080/13607863.2017.1330872.
https://doi.org/10.1080/13607863.2017.13...
,2828 Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019; 7(2):72-80. doi: 10.3390/healthcare7020072.
https://doi.org/10.3390/healthcare702007...
. Those who are better off financially and have the support of a formal caregiver or family support are able to have leisure activities, time to themselves and less emotional overload2828 Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019; 7(2):72-80. doi: 10.3390/healthcare7020072.
https://doi.org/10.3390/healthcare702007...
. Having someone to talk to and using antidepressant medication are resources used, for example, by British male caregivers2020 Fee A, McIlfatrick S, Ryan A. ‘The care circle consists of me.’ Loneliness and social isolation for older male spousal caregivers. a qualitative study. Ageing Soc. 2021; 43(3):1-18. doi: 10.1017/S0144686X21000854.
https://doi.org/10.1017/S0144686X2100085...
, while for Iranian men accepting responsibility is used as a coping strategy3232 Kazemi A, Azimian J, Mafi M, Allen KA, Motalebi SA. Caregiver burden and coping strategies in caregivers of older patients with stroke. BMC Psychol. 2021; 9(1):51. doi: 10.1186/s40359-021-00556-z.
https://doi.org/10.1186/s40359-021-00556...
.

By accepting the care of the dependent elderly person as their responsibility, the men assumed the process of dealing with the situation, even though it was stressful1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,2323 Connell RW, Messerschmidt J. Hegemonic masculinity: rethinking the concept. Gend Soc. 2005; 19(6):829-59. doi: 10.1177/0891243205278639.
https://doi.org/10.1177/0891243205278639...
, although they were operating according to the current gender model1010 Elliott K. Caring masculinities: theorizing an emerging concept. Men Masc. 2015; 19(3):240-59. doi: 10.1177/1097184X15576203.
https://doi.org/10.1177/1097184X15576203...
,3131 Zanello V. Saúde mental, gênero e dispositivos: cultura e processos de subjetivação. 3a ed. Curitiba: Appris; 2018., in which they felt responsible for exercising control over the care given3333 Freitas IBA. A construção do cuidado em um programa domiciliar de atendimento ao acamado, no município de Porto Alegre [dissertação]. São Leopoldo: PPG Saúde Coletiva/UNISINOS; 2007..

We could not find in the reports of the present Brazilian caregivers an aspect mentioned in the systematic review studies in England and the USA1616 Milligan C, Morbey H. Care, coping and identity: older men’s experiences of spousal care-giving. J Aging Stud. 2016; 38:105-14. doi: 10.1016/j.jaging.2016.05.002.
https://doi.org/10.1016/j.jaging.2016.05...
,1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
about men’s skills as facilitators in organizing care. There was also no direct mention in the interviews of financial difficulties, such as unemployment or the inability to continue working, unlike what was reported in an investigation in the USA which found financial stress among children2828 Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019; 7(2):72-80. doi: 10.3390/healthcare7020072.
https://doi.org/10.3390/healthcare702007...
.

Social disadvantage directly interferes with the conditions men find to care for their families and could be alleviated if there were social welfare policies for family members who carry out the task of informal caregivers. It should be noted that when caring for dependent elderly people means taking the caregiver out of the job market, it is now considered as a public policy issue in the most socially advanced countries. Policymakers in the European Union and those that make up the OECD3434 Minayo MCS, Mendonça JMB, Sousa GS, Pereira TFS, Mangas RNM. Support policies for dependent older adults: Europe and Brazil. Cien Saude Colet. 2021; 26(1):137-46. doi: 10.1590/1413-81232020261.30262020.
https://doi.org/10.1590/1413-81232020261...
,3535 Unión Europea. Consejo de Europa. Retos de la política social en las sociedades europeas que envejecen. Bruselas: Comisión Europea; 2003. (Recomendación 1591). have been adapting a series of measures to support family caregivers: some European countries offer salaries and some labor rights; make work more flexible to reconcile the caregiver’s time with their dependent family member; provide formal caregivers for the elderly and outsourced people to carry out domestic activities in the elderly person’s home; offer educational courses to train family caregivers, among others3131 Zanello V. Saúde mental, gênero e dispositivos: cultura e processos de subjetivação. 3a ed. Curitiba: Appris; 2018.,3333 Freitas IBA. A construção do cuidado em um programa domiciliar de atendimento ao acamado, no município de Porto Alegre [dissertação]. São Leopoldo: PPG Saúde Coletiva/UNISINOS; 2007.,3434 Minayo MCS, Mendonça JMB, Sousa GS, Pereira TFS, Mangas RNM. Support policies for dependent older adults: Europe and Brazil. Cien Saude Colet. 2021; 26(1):137-46. doi: 10.1590/1413-81232020261.30262020.
https://doi.org/10.1590/1413-81232020261...
. Although the laws and rules are specific to each country, the responsibility of the state is strong and definitive in all of them, shared with companies, civil society and families.

In Brazil, unfortunately, the care of people who have lost their autonomy and need permanent care is left almost exclusively to families. Both male and female caregivers carry a heavy burden that requires constant attention due to the demands of the illness of dependent people, loss of social and work relationships and impoverishment88 Hirata H. Gênero, patriarcado, trabalho e classe. Rev Trab Necessario. 2018; 16(29):14-27. doi:10.22409/tn.16i29.p4552.
https://doi.org/10.22409/tn.16i29.p4552...
. Although home care services, such as the Better at Home Program at national level, the Care Elderly Program in Belo Horizonte and the Elderly Companion Program3434 Minayo MCS, Mendonça JMB, Sousa GS, Pereira TFS, Mangas RNM. Support policies for dependent older adults: Europe and Brazil. Cien Saude Colet. 2021; 26(1):137-46. doi: 10.1590/1413-81232020261.30262020.
https://doi.org/10.1590/1413-81232020261...
, together with primary care health professionals offer support, they are unable to provide the care and social security that caregivers need.

Dialectically, it was noted that men, on the one hand, assume that they are willing to provide care, which involves an ethical and affective aspect; on the other hand, it is still challenging to perform practical work that implies a sense of responsibility for the life and well-being of others. Understanding their needs for emotional and instrumental support, guidance and understanding is essential if they are not to fall ill1818 Kenny K, Broom A, Kirby E, Oliffe JL, Wyld D, Lwin Z. Reciprocity, autonomy, and vulnerability in men’s experiences of informal cancer care. Qual Health Res. 2020; 30(4):491-503. doi: 10.1177/1049732319855962.
https://doi.org/10.1177/1049732319855962...
,1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
. It is necessary to overcome the well-known male resistance to seeking help from social and health services1919 Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: a systematic review of the literature. Int J Older People Nurs. 2020; 15(3):e12318. doi: 10.1111/opn.12318.
https://doi.org/10.1111/opn.12318...
,2020 Fee A, McIlfatrick S, Ryan A. ‘The care circle consists of me.’ Loneliness and social isolation for older male spousal caregivers. a qualitative study. Ageing Soc. 2021; 43(3):1-18. doi: 10.1017/S0144686X21000854.
https://doi.org/10.1017/S0144686X2100085...
,2424 Baker KL, Robertson N, Connelly D. Men caring for wives or partners with dementia: masculinity, strain and gain. Aging Ment Health. 2010; 14(3):319-27. doi: 10.1080/13607860903228788.
https://doi.org/10.1080/1360786090322878...
. But above all, it’s important to emphasize that informal care is still an invisible, unpaid job with no labor rights and no strategies or actions by the Brazilian government to support family caregivers.

Final considerations

This study has limitations. The sample of 11 male caregivers, although having an appropriate size for a qualitative study, was recruited upon the recommendation of health professionals. For this reason, although the findings provide unique insights into the motivations and experiences of male caregivers, they cannot be generalized to the experiences of caregivers elsewhere. The experience of care and the constant changes and evolution in the prognosis of diseases over time could not be understood. Future research is needed to elucidate men’s experiences of informal care in the context of illness, types of relationship and the influence of culture in each region of Brazil, as well as in other places and regions.

At the end of this study, three issues are underlined as relevant: the specificity of informal care provided by men; the implications for the health of caregivers and the absence of the state in supporting both men and women in a country whose fastest-growing population group is those aged 80 and over: the most vulnerable to the loss of physical and mental autonomy.

The first point is the encouraging surprise that the work of informal (or family) caregivers carried out by men on behalf of dependent elderly people has the same characteristics of affection, bonding and feeling of reciprocity as that of women. However, it has to be said that they are still the main protagonists of this activity, which is acknowledged by the men when they mention why they became caregivers. The motivations for assuming the role of caregiver are based on the absence, exhaustion or illness of women who are available to provide care, or on the man’s marital relationship with his dependent elderly wife. However, the testimonies show that there is an enrichment in male identity when men take on domestic tasks and personal care, recognizing, in a way, a legitimate movement for gender equality. Like women, male caregivers lack formal support and time to look after themselves. There are also problems in the world of work, which impoverishes caregivers.

The second point, as in the case of women, is the fact that non-stop care and the progression of the dependent person’s illness has repercussions on the physical and mental health of male caregivers. They are tired, have physical pain, sleep problems and depressive symptoms. Elderly spouses are more vulnerable because of their advanced age, social isolation and loneliness. They are reluctant to ask for help, corroborating the standards of masculinity according to which men need to appear strong and control their feelings. It is up to health professionals to reach out to these men and create strategies to embrace them, through support groups and house calls.

The third point is Brazil’s alienation regarding the role of the state, companies and civil society in caring for the growing population of dependent elderly people who need specific care from others. There is a need for awareness and concrete measures, as the entire European Union has already done in favor of aging with dignity. This specific last point is a political agenda in which the involvement and engagement of all those concerned with the issue is necessary, otherwise studies on informal care will only be phenomenological narratives.

  • Sousa GS, Minayo MCS, Silva RM, Meneghel SN, Ceccon RF. Men as informal caregivers of dependent older adults in Brazil. Interface (Botucatu). 2024; 28: e230528 https://doi.org/10.1590/interface.230528
  • Funding

    CNPq, edital UNIVERSAL, Process No. 405835/2016-7.

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Publication Dates

  • Publication in this collection
    04 Mar 2024
  • Date of issue
    2024

History

  • Received
    13 Apr 2023
  • Accepted
    19 Oct 2023
UNESP Botucatu - SP - Brazil
E-mail: intface@fmb.unesp.br