Abstract

This paper aims to understand the experiences of family caregivers with dependent older adults in Brazil and the consequences of caring for dependent older adults in the family caregiver’s life. This is a qualitative multicenter study employing dialectical hermeneutics as a theoretical framework. In-depth interviews were conducted with 84 family caregivers in Brasília, Rio de Janeiro, Belo Horizonte, Fortaleza, Teresina, Porto Alegre, and Araranguá, and Manaus. The thematic analysis yielded three categories: motivations for taking on the caregiving role, influences on the family caregiver’s life, coping, and self-care modalities. The care assumed is influenced by affective relationships with older adults and ethical and moral responsibilities. The influences are related to the lack of preparation for caregiving, financial hardship, restricted freedom, and physical and mental health problems. Coping strategies were religion, spirituality, turn-taking between family caregivers, and learning about the tasks. Women predominate in caregiving due to cultural, ethical, and moral reasons. However, family caregivers often lack guidance and require protection and a support network.

Key words:
Family caregivers; Frail older adults; Care; Qualitative research

Introduction

The increased longevity started to require a greater need for care for the elderly. Brazil experiences a growing demand on the family, which traditionally provides the necessary care to older adults who are unable to perform activities of daily living¹1 World Health Organization (WHO). Definition of an older or elderly person. Geneva: WHO; 2015. This is a cultural situation aggravated in the households’ socioeconomic context in locations with a low Human Development Index (HDI)²2 Anjos KF, Boery RNSO, Pereira R. Quality of life of relative caregivers of elderly dependents at home. Texto Contexto - Enferm 2014; 23(3):600-608..

The challenge of caring for older adults imposes on the family the dilemma of reconciling and reordering the demands of daily care and other domestic, social, and professional tasks.

The family group is a vital link in providing care for dependent older adults with multiple chronic conditions. National and international quantitative studies have found lower quality of life, physical and mental health problems - such as low back pain, varicose veins, hypertension, decreased sleep, depressive and anxious symptoms - in family caregivers²2 Anjos KF, Boery RNSO, Pereira R. Quality of life of relative caregivers of elderly dependents at home. Texto Contexto - Enferm 2014; 23(3):600-608.

3 Minayo MCS. O imperativo de cuidar da pessoa idosa dependente. Cien Saude Colet 2019; 24(1):247-252.

4 Frericks P, Jensen PH, Pfau-Effinger B. Social rights and employment rights related to family care: Family care regimes in Europe. Journal of Aging Studies 2014; 29(2):66-77.

5 Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, Morgan R, Ablorh-Odjidja C, Kunik ME. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry 2012; 20(3):239-247.

6 Longacre ML, Valdmanis VG, Handorf, EA, Fang, CY. Work impact and emotional stress among informal caregivers for older adults. J Gerontol B Psychol Sci Soc Sci 2016; 72(3):522-531.^-77 Connors MH, Seeher K, Teixeira-Pinto A, Woodward M., Ames D, Brodaty H. Mild cognitive impairment and caregiver burden: A 3-year-longitudinal study. Am J Geriatr Psychiatry 2019; 27(11):1206-1215.. They also expressed higher levels of tension and overload, associated with difficulties in performing basic and instrumental activities of daily living and the required care routine²2 Anjos KF, Boery RNSO, Pereira R. Quality of life of relative caregivers of elderly dependents at home. Texto Contexto - Enferm 2014; 23(3):600-608.^,77 Connors MH, Seeher K, Teixeira-Pinto A, Woodward M., Ames D, Brodaty H. Mild cognitive impairment and caregiver burden: A 3-year-longitudinal study. Am J Geriatr Psychiatry 2019; 27(11):1206-1215..

Qualitative research and more recent reviews advocate the idea that, despite the burden of care routines, the motivations and intersubjectivity of family relationships with the elderly positively influence the adaptation and coping with the situation of assisting them⁸8 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231.

9 Fernandez ML, Frías OA, Moreno CS, Palomino MPA, Del-Pino-Casado R. The start of caring for an elderly dependent family member: a qualitative metasynthesis. BMC Geriatrics 2018; 18(1):e228.

10 Kuluski K, Peckham A, Gill A, Arneja J, Morton-Chang F, Parsons J, Wong-Cornall C, McKillop A, Upshur REG, Sheridan N. "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients. BMC Geriatrics 2018; 18(1):e275.^-1111 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730..

In this line of thought, this paper presents the experience of listening to family caregivers and aims to understand the experience of family caregivers with the dependent older adults in Brazil and understand the consequences of caring for dependent older adults in the family caregiver’s life. The focus on relatives providing care to dependent older adults is essential to direct the planning of health services’ support to ensure that family caregivers do not feel abandoned.

The study is justified by the invisibility of the theme in public policies, under the assumption that the family alone should not bear the burden of caring for their dependent loved ones, which must be shared between the family, the State and civil society. This responsibility that should be assumed and led by the public authorities already occurs in several countries around the world³3 Minayo MCS. O imperativo de cuidar da pessoa idosa dependente. Cien Saude Colet 2019; 24(1):247-252.^,1212 Mendonça JMB. Idosos no Brasil: políticas e cuidados. Brasília: Editora Juruá; 2016. as a state policy and is required in Brazil, particularly in a reality of social inequality.

Methods

The research aimed to conduct a qualitative study on the situation of dependent older adults living with their families and their caregivers to support proposals for a “Policy on Dependence” in Brazil. The Research Ethics Committee of the Oswaldo Cruz Foundation approved this study under Opinion 1.326.631, which focused on the family caregiver.

A qualitative approach aimed to investigate the meanings that relatives responsible for the dependent older adults assign to experiences, bonds, and family dynamics in their daily care exercise. The theoretical-methodological hermeneutic-dialectic framework was considered the most appropriate to guide in-depth interviews with family caregivers. It was assumed that the statements must be understood in the context in which they are produced. However, at the same time, they are situated in concrete situations, in a culture that transcends and includes these people, making them part of a historical and symbolic contemporary movement¹1 World Health Organization (WHO). Definition of an older or elderly person. Geneva: WHO; 2015^,1313 Oxfam. Relatório sobre nós e a desigualdade "tempo de cuidar". Fórum Econômico Mundial de 2020, Davos. [acessado 2020 Jan 31]. Disponível em: https://oxfam.org.br/justica-social-e-economica/forum-economico-de-davos/tempo-de-cuidar/
https://oxfam.org.br/justica-social-e-ec... ^,1414 Unión Europea (UE). Consejo de Europa. Recomendación 1591. Retos de la política social en las sociedades europeas que envejecen. Bruxelas: UE; 2003., and they account for the same issues addressed here locally, with reflection and criticism¹⁵15 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 14ª ed. Rio de Janeiro: Hucitec; 2014.. The research instruments allowed researchers to talk to the respondents about the relationships between relatives and older adults, their opinions about dependence, and how they live, think, and elaborate ways of caring.

The study involved municipalities in five Brazilian regions. In the Midwest, Brasilia; in the Northeast, Teresina and Fortaleza; in the North, Manaus; in the Southeast, Rio de Janeiro and Belo Horizonte; and in the South, Porto Alegre and Araranguá. The cities were chosen to expand knowledge about family caregivers of dependent older adults in the country, in different contexts of life and culture.

Access to participants was intentional and occurred through community health workers’ mediation, an indication of geriatricians from specialized services, and an indication of relatives. The 84 family caregivers of dependent older adults contacted and agreed to participate in the study were interviewed at home, from June to September 2019. The number of participants was established by data saturation, that is, through regular information and thematic recurrence to this study’s objectives. The following criteria were observed: being family caregivers for dependent older adults and presence at the time of the interview. Relatives of institutionalized seniors and relatives who did not directly provide care to them were excluded.

The date, time, and place for the interviews were scheduled with the participants. Researchers with higher education in health and human sciences, experience in the subject under examination, and who had been trained to use the study instruction manual conducted the interviews. The “purposeful conversations”¹⁵15 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 14ª ed. Rio de Janeiro: Hucitec; 2014. were held individually, at the participant’s home, in a reserved place, noise-free, with an average duration of one hour. The Informed Consent Form (ICF) was read, and authorization was requested to record the conversations. Respect for the stories told by the participants was ensured, without judgment or criticism.

A harmonious and trusting climate between interviewer and respondent was assured by explaining the importance of the research to the interlocutor to subsidize the elaboration of a specific policy on “Dependent Aging” that improves health and working conditions of caregivers.

The interviews were transcribed in full, followed by data organization in an analytical corpus. In this logic, the researchers’ comprehensive and interpretive inferences, by reading the empirical material, allowed a general overview and apprehension of the particularities of the contexts of the reality of participants and their socio-cultural environments, identifying the themes on motivations to assume the role of caregivers, influences on the life of family caregivers and modalities of coping and self-care. The analysis of these categories was based on the assumptions of understanding and criticism, supported by national and international literature.

The participants were identified by the initial letters of their civil names, age, marital status, gender, time as caregivers and their municipality of residence to ensure their anonymity.

Result and discussion

General information

Of the family caregivers interviewed, 71 (88.7%) are female, and 13 (11.3%) are male. Of this group, seven (8.3%) were between 20 and 39 years, 44 (52.3%) were in the 40-59 years’ age group, 12 (14.3%) were in the 60-79 years’ age group, and 21 (25.1%) were over 80 years. Of the total caregivers, 39 (46.4%) were daughters or sons, 25 (29.8%) other relatives, such as sisters, nieces, and granddaughters, and 20 (23.8%) were wives or husbands. We observed that 44 (52.38%) of the people exercised care for two to five years, eight (9.5%) from six to nine years, 22 (26.2%) for more than ten years, and ten (9.5%) for less than a year. Of the total, 46 (54.8%) of the participants did not have anyone else to assist the older adult.

Motivations to assume the role of caregiver

The motivations alleged by people to decide to assume care involve several aspects. Some are focused on the ethics of reciprocity, feelings of gratitude, affection, admiration, and love for the older adult. Other reasons are sustained by affective and harmonious bonds, established throughout life, and finally, those resulting from the lack of choice among relatives to assume care and the moral and ethical responsibility for not abandoning the older adult. Relationships with fathers, mothers, daughters, sons, matrimonial, fraternal-like, and in some cases, with nieces, granddaughters, daughters-in-law, and even ex-wives are recorded. According to a caregiving daughter, her motivation is based on affection.

The reports explain the moral and ethical responsibility for providing care. The memories of the times that the older adults dedicated to the family, their affection, and their stories of sacrifice and renunciation to raise and educate their children are the most recalled reasons. Children, therefore, feel a duty and obligation to care and support their parents during aging. They mention reciprocity for the care received and are grateful for the opportunity to provide care. A study in Thailand with family caregivers found that care is associated with feelings of responsibility, gratitude, and pity¹⁶16 Tamdee D, Tamdee P, Greiner C, Boochiang W, Okamoto N, Isowa T. Conditions of caring for the elderly and family caregiver stress in Chiang Mai, Thailand. Journal of Health Research 2019; 33(2):138-150.. Another study points out that long-term family relationships, whether by blood or marriage¹⁷17 Greenwood N, Smith R. Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature. BMC Geriatrics 2019; 19(1):e169., are the reason for care.

Husbands and wives assumed care in the face of certain circumstances, such as children residing in other municipalities, or have their own families and do not want to burden them. The marriage marked by a loving, healthy, and lasting relationship, in which there is a genuine engagement vis-à-vis the other, was also pointed out as a reason for providing care.

When the husband received the diagnosis of Alzheimer’s disease of his wife, he assumed the role of full-time caregiver. He created a care routine of understanding and writing down the smallest signs shown by the wife to report to the doctor. Similar results were found in Chile¹⁸18 Pereira RM, Morales AR, Ferrada SC, Cuervo SC, Silva SMC, Díaz SC. Mayores cuidando mayores: sus percepciones desde una mirada integral. Enfermería: Cuidados Humanizados 2018; 7(2):83-108., where scholars call attention to the fact that the caregiver himself prioritizes meeting the basic needs of the daily life of his loved one, which often ends up limiting the exercise of his self-care.

Respect for the history lived with the older adult in a marriage is also imperative for care even in cases where relationships with older adults have been broken before their illness, as with ex-wives.

The former wives explained that they took care of the older adults again because they did not have other relatives to take care of them despite having marriages permeated by violence, betrayals, and conflicts. The situation gave rise to a feeling of pity and respect for the years lived together. These older adults had migrated from rural to urban areas, which caused them to lose contact with relatives of the extended family. This circumstance was also present in a former daughter-in-law who takes care of the former father-in-law for fear of him being abandoned by the family.

In the research, we identified some situations of relatives’ resistance to provide care, especially with large families, conflicts over the distribution of tasks in the face of the older adults’ dependence, and overload of women.

In the above report, as the older woman was discharged, the six children got together and opted for institutionalization. However, one of the daughters took care of the mother, because she said her suffering bothers me more than my own life. Here it is evident that the affective and emotional dimensions influence the decision to take care of the older adult. In this specific case, it was observed in other countries, regarding the care assumed by only one relative¹⁹19 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866.

20 Rodriguez P. El apoyo informal en la provisión de cuidados a las personas con dependencias. Madrid: Forum de políticas feministas; 2004.^-2121 European Association Working For Carers. Carers in Europe. [acessado 2020 Fev 23]. Disponível em: http://www.eurocarers.org/userfiles/file/Factsheet 2009.pdf
http://www.eurocarers.org/userfiles/file... .

Family caregivers feel ashamed to verbalize that they exercise care due to the lack of options and do not always speak openly about family dysfunctionality. Family conflicts that occur between relatives in order not to share the role of caregivers are usually associated with how painful and costly this is and disrupts caregivers’ life⁵5 Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, Morgan R, Ablorh-Odjidja C, Kunik ME. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry 2012; 20(3):239-247.^,66 Longacre ML, Valdmanis VG, Handorf, EA, Fang, CY. Work impact and emotional stress among informal caregivers for older adults. J Gerontol B Psychol Sci Soc Sci 2016; 72(3):522-531.^,88 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231.^,1111 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730.^,1313 Oxfam. Relatório sobre nós e a desigualdade "tempo de cuidar". Fórum Econômico Mundial de 2020, Davos. [acessado 2020 Jan 31]. Disponível em: https://oxfam.org.br/justica-social-e-economica/forum-economico-de-davos/tempo-de-cuidar/
https://oxfam.org.br/justica-social-e-ec... . In this case, the family component that assumes the role with solidarity, solitude, devotion, and the duty of responsibility emerges, thus fulfilling the traditions of the countries of Latin culture, in which adult children are responsible for their parents when they age¹¹11 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730.^,1919 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866.^,2222 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.. Other ethnic groups, such as Orientals, also maintain the culture of relatives taking care of each other¹⁷17 Greenwood N, Smith R. Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature. BMC Geriatrics 2019; 19(1):e169.^,2222 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.^,2323 Couto AM, Caldas CP, Castro EAB. Family caregiver of older adults and cultural care in nursing care. Rev Bras Enferm, 2018; 71(3):959-966.. In Brazil, the absence of public power¹⁹19 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866. weighs on family caregivers.

Noteworthy is the fact that most family caregivers are women. The role of family caregiver appears as a fate:

Traditional gender roles are identified in this statement, including maintaining the home, marriage, and caring for parents and children rooted in contemporary society¹⁷17 Greenwood N, Smith R. Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature. BMC Geriatrics 2019; 19(1):e169.^,1919 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866.^,2222 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.. The task of caring for older adults falls on wives, daughters, daughters-in-law, nieces, and granddaughters. In Canada²⁴24 Special Senate Committee on Aging. Canada's Aging Population: Seizing the Opportunity. Final report. Otawa: 2009. [acessado 2020 Mar 6]. Disponível em: https://sencanada.ca/content/sen/Committee/402/agei/rep/AgingFinalReport-e.pdf
https://sencanada.ca/content/sen/Committ... and European countries²¹21 European Association Working For Carers. Carers in Europe. [acessado 2020 Fev 23]. Disponível em: http://www.eurocarers.org/userfiles/file/Factsheet 2009.pdf
http://www.eurocarers.org/userfiles/file... ^,2525 Spasova S, Baeten R, Coster S, Ghailani D, Peña-Casas R, Vanhercke B. Challenges in long-term care in Europe, a study of national policies. Brusssels: European Commission; 2018., the struggle of family caregivers is for social recognition and economic support from the State for the fulfillment of their role⁵5 Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, Morgan R, Ablorh-Odjidja C, Kunik ME. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry 2012; 20(3):239-247.^,2626 Wolf PJW, Oliveira GC. Os Estados de Bem-Estar Social da Europa Ocidental: tipologias, evidências e vulnerabilidades. Economia e Sociedade 2016; 25(3):661-694.. These issues were not raised in the research reports. Oxfam’s document¹³13 Oxfam. Relatório sobre nós e a desigualdade "tempo de cuidar". Fórum Econômico Mundial de 2020, Davos. [acessado 2020 Jan 31]. Disponível em: https://oxfam.org.br/justica-social-e-economica/forum-economico-de-davos/tempo-de-cuidar/
https://oxfam.org.br/justica-social-e-ec... released at the Doha Meeting denounced the invisibility of female caregivers’ work around the world. This work impoverishes them financially and enriches the capitalist and patriarchal world.

In this study, in the same sense as the previous arguments, it is pointed out that men are not the first option to assume care. They do it when there is no alternative:

Unmarried children and spouses looking after older women were identified in this study. Men’s full dedication to caring is usually motivated by the fact that they are single. When they are married, in general, daughters-in-law assume this responsibility. Regarding husbands, a study in Germany²⁷27 Langner LA, Furstenberg FF. Gender differences in spousal Caregivers' care and housework: fact or fiction? J Gerontol B Psychol Sci Soc Sci 2020; 75(1):173-183. considers that the situation of men taking care of their wives cannot be generalized for all age groups. In old age, the care they provided usually occurs when they have already retired from the labor market²⁷27 Langner LA, Furstenberg FF. Gender differences in spousal Caregivers' care and housework: fact or fiction? J Gerontol B Psychol Sci Soc Sci 2020; 75(1):173-183..

Men providing care tend to receive more external help with domestic chores, which is supported by a longitudinal study in Germany²⁷27 Langner LA, Furstenberg FF. Gender differences in spousal Caregivers' care and housework: fact or fiction? J Gerontol B Psychol Sci Soc Sci 2020; 75(1):173-183., which revealed that male caregivers are significantly more likely to receive external support (29.6%) than women (17.7%)²⁷27 Langner LA, Furstenberg FF. Gender differences in spousal Caregivers' care and housework: fact or fiction? J Gerontol B Psychol Sci Soc Sci 2020; 75(1):173-183..

Influences in the family caregiver’s life

The changes in the lives of caregivers when faced with an unexpected situation of the dependence of a relative are massive and, in general, arouse concern about the difficulties they will face, with their inexperience and the unpredictable situation:

Insecurity in dealing with this new context and the limits of care are common issues among respondents in all the cities surveyed. Virtually everyone talks about the need to learn about aging and the disease that made their family dependent to understand their behavioral changes and provide them with well-being and satisfaction.

These circumstances can increase the burden of those providing assistance and give rise to feelings of anguish and stress¹⁰10 Kuluski K, Peckham A, Gill A, Arneja J, Morton-Chang F, Parsons J, Wong-Cornall C, McKillop A, Upshur REG, Sheridan N. "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients. BMC Geriatrics 2018; 18(1):e275.^,1616 Tamdee D, Tamdee P, Greiner C, Boochiang W, Okamoto N, Isowa T. Conditions of caring for the elderly and family caregiver stress in Chiang Mai, Thailand. Journal of Health Research 2019; 33(2):138-150.^,1818 Pereira RM, Morales AR, Ferrada SC, Cuervo SC, Silva SMC, Díaz SC. Mayores cuidando mayores: sus percepciones desde una mirada integral. Enfermería: Cuidados Humanizados 2018; 7(2):83-108.. The lack of educational support and training to help, especially in the initial stages of care, can last a long time, mainly if there are complex and often unpredictable comorbidities and symptoms⁸8 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231.

9 Fernandez ML, Frías OA, Moreno CS, Palomino MPA, Del-Pino-Casado R. The start of caring for an elderly dependent family member: a qualitative metasynthesis. BMC Geriatrics 2018; 18(1):e228.^-1010 Kuluski K, Peckham A, Gill A, Arneja J, Morton-Chang F, Parsons J, Wong-Cornall C, McKillop A, Upshur REG, Sheridan N. "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients. BMC Geriatrics 2018; 18(1):e275.^,1616 Tamdee D, Tamdee P, Greiner C, Boochiang W, Okamoto N, Isowa T. Conditions of caring for the elderly and family caregiver stress in Chiang Mai, Thailand. Journal of Health Research 2019; 33(2):138-150.^,2121 European Association Working For Carers. Carers in Europe. [acessado 2020 Fev 23]. Disponível em: http://www.eurocarers.org/userfiles/file/Factsheet 2009.pdf
http://www.eurocarers.org/userfiles/file... . All the cases heard indicate the need to promote care to the family caregiver, with special person-centered care, considering the particularities of older adults and those who assist them³3 Minayo MCS. O imperativo de cuidar da pessoa idosa dependente. Cien Saude Colet 2019; 24(1):247-252.^,88 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231.^,1919 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866..

Most family caregivers express their desire to lead in assisting older adults, which is yet another reason for establishing links with health professionals for more adequate and effective care. The appreciation of family caregivers can facilitate the clinical management and assertive behaviors of professionals who begin to understand situations better. Collaborative work can reduce family caregivers’ stress and relieve the care services, because, when feeling valued, they are involved in care¹⁰10 Kuluski K, Peckham A, Gill A, Arneja J, Morton-Chang F, Parsons J, Wong-Cornall C, McKillop A, Upshur REG, Sheridan N. "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients. BMC Geriatrics 2018; 18(1):e275.^,1919 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866.^,2020 Rodriguez P. El apoyo informal en la provisión de cuidados a las personas con dependencias. Madrid: Forum de políticas feministas; 2004.. A current trend considers family caregivers’ work as an integral part of health systems²¹21 European Association Working For Carers. Carers in Europe. [acessado 2020 Fev 23]. Disponível em: http://www.eurocarers.org/userfiles/file/Factsheet 2009.pdf
http://www.eurocarers.org/userfiles/file... ^,2424 Special Senate Committee on Aging. Canada's Aging Population: Seizing the Opportunity. Final report. Otawa: 2009. [acessado 2020 Mar 6]. Disponível em: https://sencanada.ca/content/sen/Committee/402/agei/rep/AgingFinalReport-e.pdf
https://sencanada.ca/content/sen/Committ... .

The participants considered reconciling health care with older adults’ care demands as the most challenging part. These findings are exacerbated when there is no care alternation or in cases where older adults require intermittent care. As a result, caregivers are forced to sacrifice various dimensions of their life, giving rise to negative repercussions on their physical and mental health:

Other caregivers who take care of themselves talked about their situation in a similar way, pointing out that their loved ones’ demands lead them to physical and mental exhaustion and deprivation of their freedom. These people must reconcile care with other tasks. In a study with Mexican female caregivers, women express the same feelings of tiredness, exhaustion, and overload¹¹11 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730.. The care routine is too tiring, especially for people who need to assist relatives daily, leading them to emotional stress³3 Minayo MCS. O imperativo de cuidar da pessoa idosa dependente. Cien Saude Colet 2019; 24(1):247-252. and sometimes burnout syndrome. The latter case occurs mainly with family caregivers of older adults with dementia²2 Anjos KF, Boery RNSO, Pereira R. Quality of life of relative caregivers of elderly dependents at home. Texto Contexto - Enferm 2014; 23(3):600-608.^,77 Connors MH, Seeher K, Teixeira-Pinto A, Woodward M., Ames D, Brodaty H. Mild cognitive impairment and caregiver burden: A 3-year-longitudinal study. Am J Geriatr Psychiatry 2019; 27(11):1206-1215.^,88 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231.. The time spent on caring for older adults and the lack of space to carry out personal activities burdens caregivers, as there is a clear relationship between greater elderly dependence, time spent for direct care, and less time for themselves. This data shows the need to give visibility to the problem and promote ways of dividing and reorganizing care activities, seeking the caregiver’s balance and well-being³3 Minayo MCS. O imperativo de cuidar da pessoa idosa dependente. Cien Saude Colet 2019; 24(1):247-252.^,1919 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866..

A study in Spain found that 39% of caregivers had depressive symptoms²²22 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.. The family obligation to provide care alone and the dysfunctional thoughts about this responsibility act indirectly in depressive symptoms²²22 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.^,2828 Sayegh P, Knight BG. The effects of familism and cultural justification on the mental and physical health of family caregivers. J Gerontol B Psychol Sci Soc Sci 2010; 66B(1):3-14.. The negative psychosocial repercussions on relatives are more significant when they believe that they are unable to provide care as it should be²²22 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.^,2828 Sayegh P, Knight BG. The effects of familism and cultural justification on the mental and physical health of family caregivers. J Gerontol B Psychol Sci Soc Sci 2010; 66B(1):3-14..

The absence of a social-family network for sharing care in dependence interferes with the experience of the family caregiver who experiences the activities of daily living with physical and mental fatigue and financial difficulties. In this context, the caregiving daughter recognizes:

For some participants, dealing alone with the older adults’ mood swings led to mental exhaustion²2 Anjos KF, Boery RNSO, Pereira R. Quality of life of relative caregivers of elderly dependents at home. Texto Contexto - Enferm 2014; 23(3):600-608.^,77 Connors MH, Seeher K, Teixeira-Pinto A, Woodward M., Ames D, Brodaty H. Mild cognitive impairment and caregiver burden: A 3-year-longitudinal study. Am J Geriatr Psychiatry 2019; 27(11):1206-1215.^,88 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231.^,2222 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202.^,2828 Sayegh P, Knight BG. The effects of familism and cultural justification on the mental and physical health of family caregivers. J Gerontol B Psychol Sci Soc Sci 2010; 66B(1):3-14. in which the ability to address them with patience was exhausted, giving rise to contradictions, conflicts, and tensions in the role of caregivers. They weigh on the daily needs of family caregivers, their desire to work, and moments of freedom and better financial conditions.

Heidegger²⁹29 Heidegger M. Ser e tempo. 6ª ed. Petrópolis: Vozes; 1997. Parte 1. points out that it is necessary to realize that care providers take risks, have limitations, make mistakes and get it right, and require care to provide care to the other. One cannot care without considering the human condition’s ontological determinations, human’s own identity built on the coexistence and interrelationship that, in this study, reveals the limitations of care with dedication and concern for the other. Care is only authentic when it joins reality and possibility, but a possibility as a human condition that takes into account human behavior and attitudes.

Cases of young and economically active men and women who had to leave work to care for the elderly relative were found. In other situations, relatives assumed care because they were unemployed and commented that they were unable to return to the job market because they did not find any alternative in the family or the government. Only in one family did the brothers pay the minimum wage to the sister who takes care, socially acknowledging her work. Most caregivers then depend on their families to cover personal and older adults’ expenses. This tension of economic bias has also been found in other countries⁶6 Longacre ML, Valdmanis VG, Handorf, EA, Fang, CY. Work impact and emotional stress among informal caregivers for older adults. J Gerontol B Psychol Sci Soc Sci 2016; 72(3):522-531.^,99 Fernandez ML, Frías OA, Moreno CS, Palomino MPA, Del-Pino-Casado R. The start of caring for an elderly dependent family member: a qualitative metasynthesis. BMC Geriatrics 2018; 18(1):e228.^,1010 Kuluski K, Peckham A, Gill A, Arneja J, Morton-Chang F, Parsons J, Wong-Cornall C, McKillop A, Upshur REG, Sheridan N. "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients. BMC Geriatrics 2018; 18(1):e275..

Some people still face the challenges to reconcile professional work with the demands of care: I have to learn to separate things, or else I will fail at my job (RMRC, 51, single, has been caring for her mother for a year, Rio de Janeiro). This reality is similar in other countries, and in some of them, as in Germany⁵5 Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, Morgan R, Ablorh-Odjidja C, Kunik ME. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry 2012; 20(3):239-247.^,2727 Langner LA, Furstenberg FF. Gender differences in spousal Caregivers' care and housework: fact or fiction? J Gerontol B Psychol Sci Soc Sci 2020; 75(1):173-183., in the policy in favor of the dependent person, arrangements are made for hours, time, and flexible wages that facilitate care. Of the respondents in this research, many caregivers held essential positions in the organizations⁶6 Longacre ML, Valdmanis VG, Handorf, EA, Fang, CY. Work impact and emotional stress among informal caregivers for older adults. J Gerontol B Psychol Sci Soc Sci 2016; 72(3):522-531. and were unable to give up their jobs. They point out that even having someone at home, the concern with medicines, food, and other tasks related to the loved one, means tiredness to reconcile with the occupational demands²2 Anjos KF, Boery RNSO, Pereira R. Quality of life of relative caregivers of elderly dependents at home. Texto Contexto - Enferm 2014; 23(3):600-608.^,66 Longacre ML, Valdmanis VG, Handorf, EA, Fang, CY. Work impact and emotional stress among informal caregivers for older adults. J Gerontol B Psychol Sci Soc Sci 2016; 72(3):522-531.^,88 McGilton KS, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J. et al. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018; 18(1):e231..

Given this situation, elderly caregiver programs are available from the Canadian and Danish governments to provide family caregivers with time to reconcile work and other activities⁵5 Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, Morgan R, Ablorh-Odjidja C, Kunik ME. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry 2012; 20(3):239-247.^,1010 Kuluski K, Peckham A, Gill A, Arneja J, Morton-Chang F, Parsons J, Wong-Cornall C, McKillop A, Upshur REG, Sheridan N. "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients. BMC Geriatrics 2018; 18(1):e275.^,3030 Organization of Economic Development (OCDE). Policies to support family cargivers. IV chapter. In: Organization of Economic Development (OCDE). Help wanted? Providing and paying for long term care. Paris: OCDE Publishing; 2011. p. 121-158.. It is a feasible alternative for those who cannot or do not want to pay for formal caregivers.

Coping and self-care modalities

Most caregivers consider that they require help to have a little control over their personal lives, such as a support network that allows them to take care of themselves, someone to share their feelings with, without judgment or criticism, being physically and mentally connected with others¹¹11 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730., learning about the person’s illness, and the presence of religion and faith.

Among the support strategies, the research mentioned the search for help within the family to alternate in the role: We are humans after all, and I get tired. If I need to go to the doctor, I go, and my sister stays there. One helps another, and I end up venting a lot to her. There are many conversations. I spend the day talking (JMA, 54 years old, the daughter-in-law has been caring for the elderly for two years, Manaus). This alternation was also mentioned by other caregivers, who mentioned the need to have pleasant moments, leisure, travel and walks, giving a little lightness in their life and the necessary self-care:

Moving away from the care situation curbs stress momentarily. Some caregivers reported that they had to overcome their apprehensions of leaving the older adult with other people. Then they organized themselves to have some moments of rest without feeling guilty. However, some family dynamics preclude alternating care¹¹11 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730.^,1717 Greenwood N, Smith R. Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature. BMC Geriatrics 2019; 19(1):e169.^,1919 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003, 19(3):861-866.^,2020 Rodriguez P. El apoyo informal en la provisión de cuidados a las personas con dependencias. Madrid: Forum de políticas feministas; 2004., either due to the distance and pre-existing tensions in the family members’ relationship, the lack of commitment of relatives to care, geographical distances, and many children, especially in the northeast, where several families migrated to other cities, which hinders the provision of support to family caregivers. It should be noted that, although 46.2% of the participants reported that they receive help with care, this support only happens on weekends and timely. Care is exercised in a shift format and effective relay between the brothers only in four households. Several caregivers mentioned that they seek to learn about the health problems of the people they care for, which makes them safe and confident in performing their role:

After diagnosis, knowing and learning about the nuances of the disease, since some pathologies demarcate significant impairments, affecting the motor, behavioral and affective part of older adults and their relationship with family caregivers may favor an adaptation, so that wear and exhaustion are minimized in the provision of care. The need for care in geriatrics and gerontology is unanimous in this study among the participants. Initiatives such as the Melhor em Casa (free translation: Better at Home) Program with home care for older adults requiring long-term care are necessary for family caregivers. Belo Horizonte has the Maior Cuidado (free translation: Greater Care) Program, which provides formal caregivers for low-income people: I cannot physically provide care to her. Having the girls here at home is a blessing. They bathe, exercise, and interact with older adults. It’s just two hours a day, but that helps (MJS, 60 years old, has taken care of the bedridden mother for four years, Belo Horizonte).

The transition to the role of caregivers must be understood (and supported) in several ways. There is a time for learning to care, which may involve the development of management strategies for clinical, psychological, and relational aspects, expressed daily. Some emotional and interpersonal needs are imposed on the relationship besides several guidelines that can be generalized, providing support from other people and, almost always, social, financial, and structural support³¹31 Fernandes CS, Angelo M, Silva JAM, Carvalho BG. Family caregivers: what do they need? An integrative review. Revista da Escola de Enfermagem da USP 2016; 10 (4):675-682..

Family caregivers in all municipalities make financial sacrifices to have a health plan and ensure specialized care in geriatrics. Relatives also pay for speech therapists and private physiotherapists. Formal caregivers for older adults are hired when a relative is unable to care 24 hours/day because he/she does not have flexibility in the work environment or a person to share the care, and do not have the physical conditions to care for the older adult.

Deep social inequalities mark the Brazilian reality. Few relatives can organize themselves financially to provide the best care to the older adult. In this research, only a small number of family caregivers took care of themselves, valuing their affections, with the possibility of a unique production of holding their places in the world when establishing an effective care routine.

Foucault³²32 Foucault M. A hermenêutica do sujeito. São Paulo: Martins Fontes; 2010. argues that the notion of self-care shows ethics in itself, in which self-care can be characterized as an elaboration of the subject through a subjective transformation and the consequent establishment of new ways of life, which are manifested by acts and conduct and a set of practices and techniques that are exercised from oneself to oneself.

Physical activity, religion, and spirituality have often been described as a means of self-care:

Many caregivers say prayers, go to church, receive religious groups at their homes, looking for strength to help endure difficult days. For many, faith is a mechanism for relieving tension. Religious beliefs and faith-related creeds were mainly positive for caregivers, giving them meaning for the tasks of caring. According to the literature, Latin culture caregivers tend to value religiosity as support for coping with care procedures¹¹11 Mendez-Luck CA, Anthony KP, Guerrero LR. Burden and bad days among mexican-origin women caregivers. J Gerontol B Psychol Sci Soc Sci 2019; 75(8):1719-1730.^,2222 Losada A, Márquez-González M, Knight BG, Yanguas J, Sayegh P, Romero-Moreno R. Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts. Aging Ment Health 2010; 14(2):193-202..

A limitation of this study is the lack of registration of family caregivers in the health information system, which resulted in a convenience sample.

Final considerations

The empirical dimensions underlying the experiences of family caregivers of older adults point out that caring is an eminently female and unpaid job. Attention is drawn to the number of young men taking care of older adults, and the lack of questioning about the role of caring among the respondents. For most, taking on the role of caregiver involved positive feelings, gratitude, ethical and moral responsibility towards older relatives who lost their autonomy. There is a sense of reciprocity in the care received, in a movement of renouncing oneself in a pre-established moral code that links the subject in the care of the other.

The daily needs of family caregivers are characterized by insecurity due to the lack of guidance in care in geriatrics and gerontology, psychosocial repercussions for the drudgery and repetitive work, social deprivation, difficulties in reconciling care and work, suspension of professional life and financial embarrassment. Noteworthy is the percentage of older adults taking care of other older adults. This data is of concern due to the increased vulnerability of older caregivers in the face of routine and permanent workload.

It is necessary to draw the attention of the Brazilian State to the situation of caregivers. While the Brazilian legislation considers care for the dependent older adults to be the responsibility of the family, the state, and civil society, specific policies supporting family caregivers are weak or non-existent. The country does not financially invest in family caregivers. Studies that consider family caregivers’ experience can be a way to integrate them as part of the health system, valuing their demands, and assuring their rights and adequate protection by the State.

References

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