RESEARCH ARTICLES

Family caregivers of older adults with mental and behavioral disorders: experiences and feelings unveiled

Milara Barp^I; Sueli de Carvalho Vilela^II

^IGraduada em Enfermagem pela Escola de Enfermagem da Universidade Federal de Alfenas. Minas Gerais, Brasil. E-mail: milarabarp@hotmail.com
^IIDoutora em Ciências em Enfermagem Psiquiátrica. Professora Adjunta na Escola de Enfermagem da Universidade Federal de Alfenas. Minas Gerais, Brasil. E-mail: suelicvilela@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2015.11866

ABSTRACT

The aim was to understand the experience of informal caregivers of elderly people with behavioral mental disorders. This qualitative, descriptive, existential-phenomenological study was conducted in 2014 through open interviews of twelve caregivers of elderly people with mental or behavioral disorders. The content expressed was analyzed using Heidegger as the theoretical framework and the phenomenological method of Giorgi. The results indicated four units of experience: Experiencing facticity in their life-world; Being-a-caregiver and neglect of self and others; Being-a-caregiver thrown into the world of older adults; and Beingwith finds a new direction for care in faith: these represent the essence of caregivers' experience of elderly subjects with psychiatric disorders. The knowledge unveiled here provides input to the formulation of strategies and interventions for this population.

Keywords: Nursing; caregivers; family; geriatrics.

INTRODUCTION

Estimates suggest that by 2050 the population aged 60 or more in Brazil will triple, though the Brazilian reaching 75 years of age presents, on average, 65 years with quality of life, and the remaining 10 years associated with illnesses and dependency of care¹.

With the increasing of age physical and psychosocial changes occur , such as increasing prevalence of chronic diseases, cognitive limitations, deficits in functional capacity, dependency, this time even the elderly experiencing loss and grief, and changing social roles. All these factors culminate in increased behavioral mental diseases triggering or aggravating psychological distress. Among the major mental illnesses among the elderly are anxiety, dementia, organic mental disorders, disorders due to alcohol abuse and dependency on drugs^2.3.

Caring for the elderly is predominantly performed by informal caregivers, family members of the elderly or relatives passing to perform most of the care actions, without having technical / theoretical knowledge and without receiving any kind of remuneration⁴.

Care for the elderly with behavioral mental disorders is complex and full-time, the caregiver deals with situations that surpass physical needs without any kind of support or exploitation, causing to experience a high level of suffering and physical and emotional exhaustion^5.6.

Considering the importance of the informal caregiver and the absence of studies emphasizing the subject of caregivers to elderly with behavioral mental disorders led to the guiding outlined question of the study: What does it mean to be an informal caregiver to elderly patients with mental disorders? It is assumed that by understanding it from their views, experiences and meanings assigned to the task of caring, it becomes possible to comprehend their real needs by providing subsidies for reflection on professional practices meeting this population.

Given the above, this study aimed to understand the experience of informal caregivers caring of elderly patients with behavioral mental disorders.

THEORETICAL FRAMEWORK

This study choses to use primarily the theoretical study of existential analytic philosopher Martin Heidegger, who considers that speech is an ontological instance allowing to transmit experiences, share senses and bring about the inner self of the subject⁷.

In the view of the philosopher, the human being is established from three perspectives: factuality, existence and decay⁷. The factuality refers to human being as be-released-in-the-world, connecting to the concrete reality of things, the interaction of dasein with another dasein which makes it a be with. The existence corresponds to the human ability to see, interprete and appropriate the things of the world from their own perspective and the decline is the fact that man abandon their own interests in favor of their occupations, the absence of an authentic life ⁸.

Heidegger is also considered the philosopher of care and considers the care process as an essential element for understanding the world and human existence ⁹. Care is found in all attitudes and actual situations, so that is a Way of being essential humanity¹⁰.

Within this care man, delivered to the world of occupation, must cease to be the master of himself to become the caregiver of being⁷. Involvement and inter-human entanglement allows him to show and express anguish in an authentic way, transcending and reaching a power-be-oneself ¹⁰.

METHODOLOGY

This is a qualitative, descriptive study of existential-phenomenological character. This study was conducted with 12 family caregivers of elderly patients with behavioral mental disorder belonging to the area covered by health strategy units of the family (ESF) of a medium-sized municipality of Minas Gerais, in 2014.

The inclusion criteria of caregivers were: informal caregiver of the elderly for at least a year, belonging to the area covered by the ESF and having maintained communication and cognitive skills. For the elderly, they should have of some kind of mental or behavioral disorder.

The choice of caregivers took place upon indication of community health workers (CHW) and nurses of the FHT units. For each of the twelve FHS units surveyed, we drew up a list of caregivers who were indicated as fitting the inclusion criteria. At the end of the survey one subject for study was drawn for each ESF. We opted for the draw, considering that consciousness is always considered intentional, so the use of lots sought to avoid intentionality and possible selection roundabouts¹¹.

Consecutively, we contacted the subjects in their homes, inviting them to participate in the study, on acceptance scheduling date and time for information collection.

With data collection, caregivers signed the Informed Consent Form and the elderly the terms of agreement. Following were the open interviews, guided by a single question: Would you tell me what it means to take care of your (relation's name)?

The interviews were recorded in digital format with an average duration of 32 minutes, totaling 6 hours and 24 minutes of recording. Soon after all was fully transcribed to become empirical evidence, which was analyzed according to the model proposed by Giorgi, consisting of four stages: general reading material, definition of the units of meaning, expression of the units in the perspective chosen by the researcher and formulation of a synthesis of units ¹².

First, readings of the descriptions were held to get a general feel of everything that had been recorded. Having a sense of the whole, we sought to discriminate meaning units, which are themes or essences contained in the descriptions and revealing phenomenon structure. Once outlined the units of meaning, new readings were performed seeking to understand its manifest content. Finally, the meaning units were synthesized and processed in claims that are consistent with respect to the subject's experience that forms the structure of experience¹³.

The research project was approved by the Ethics Committee of the Federal University of Alfenas and registered under No. 564,914 and CAAE number 26776114.0.0000.5142. To maintain the confidentiality and anonymity, the names of the subjects were coded with a capital C (caregiver) followed by ordinal number (C1, C2 ...C12).

RESULTS AND DISCUSSION

The sample was entirely composed of female caregivers, eight daughters (66.8%), two sisters (16.6%) and two wives of the elderly (16.6%) with a mean age of 55.41 years (40-68 years). On the education level of the participants, six had incomplete primary education (50.07%), two complete elementary education (16.6%), one with incomplete secondary education (8.33%), three completed secondary education (25 %). The family income of caregivers, six had a monthly income of 1-5 basic salaries (50%), four with a monthly income of 5-10 basic salaries (33.3%) and two with income up to one monthly basic salary (16.7%) .

As for the Mental or Behavioral Disorder of the elderly being cared for, six showed dementia (50.1%), three others depressive disorders (25%), one elderly had a bipolar disorder (8.33%), one patient with schizophrenia (8, 33%) and one old alcohol dependent(8.33%).

The appreciation of the testimonies allowed the elucidation of four structures of meaning: Experiencing the factuality in its life-world; To be-caregiver and the abandonment of the self and other entities, Be caregiver launched in the world of being old; Be with finds in religion a new meaning to care, representing the essence of the experience of the subject caregivers of patients with psychiatric disorders.

Experiencing the factuality in its life-world

The existential factuality is present at the time human being is at the mercy of daily life, leading him to act according to what they say being right or wrong, obeying orders and prohibitions. The human being comes into existence in the already established, abandoning the way of being a self⁷. In the present study, the factuality appears when care is considered a female thing:

[...] It has to be me, because I am the only sister. Were two more, but they died. Brothers ... you know? Brothers do not take care of one another (C1).

For these women, care takes on a meaning as social expectations past from generation to generation. The naturalness to assume the role of care is related to the historically female role to take responsibility for the house and taking care of children, husband, elderly and sick as the man takes responsibility for supporting the family ^14-16.

The care provided by the wife is also traditionally accepted, since the partner is an influential person in the life of the elderly, accepted this condition and little questioned by the family¹⁴.

I feel obliged to do so. And being his wife, I am obliged to do this. Wanting it or not, I am responsible and I have to do this (C2).

Among the factors that motivate wives caregivers are the obligation and moral duty, marital commitment and gratitude for lasting married life and the religious question of marriage vows^{15, 17}.

We see the moral obligation of children to care for their parents:

It's my mother, so she took care of me, I say I do not consider a obligation to do all that I do for her. For me it is a pleasure ... (C3).

The filial obligation is a socially constructed norm¹⁸, accepted without questionings, considering the return of the received care, mutual respect, gratitude, and the only option for the offspring^19,20.

Thus, care activities are not seen as a premeditated act, a choice, but as an imposition of veiled duties existing between the members of a family.

The factuality is very important in the existential conception of Heidegger and is factuality only in society, in terms of identity and value system, carrying out the personal decision which defines the existence⁷.

Before the factuality that made them caregivers, it can be seen in manifest content that only one family member takes care and does not receive assistance from other family members:

My brothers do help me nor offer help, no one offers a change for me to go out, in almost the year that I'm here, no one gave a hand, or anything (C8).

Once a caregiver assumes responsibility, increasingly the task becomes nontransferable and the other family members disengage from the task. When other family members do not articulate to assist, they create an overload situation on one element for the primary caregiver^5.21. Thus, we can infer care as the delivery of being there at he nearest possibilities.

Be caregiver and the abandonment of self and other entities

The moment a man begins to act according to what is defined as a certain society he experiences a fall, a true state of decay, abandonment and helplessness^7.8.

The caregiver has a clear perception of abandonment of self in several issues in his private life, and social detriment of caution:

Sometimes we will have to leave a little bit, travel ... we will not because of it, I have a daughter who lives in another city I always visited her, now I can not go. (C4)

I want to be among the people, all together counting things, talking, I'm missing it (C5).

The impossibility of contact with children and of cultivating friendships the living to care seems to generate a feeling of dissatisfaction and hopelessness in caregivers, distressing them because the desire becomes overwhelmed by duties and obligations.

The caregiver is faced with the impossibility of leisure activities as the task of caring is intermittent and there is no presence of other people to perform this function while they are away from home, changing social life^20,22,23. Gradually the caregiver finds himself alone, solitary in the domestic sphere, with detachment of friendship circles²⁴, compromising their well-being and mental health⁴.

Another issue enunciated by some of the caregivers, bringing on questions of resignation, refers to have to stop working outside the home:

I, I miss work ... I like to leave the house, I could not wait to go into the service, did not want to go home and look at him, but as it happens ... it is hopeless to work now (C9) .

The statements brings to light the fact that going to work is seen as a form of relief from caring for the elderly. When this is not possible, weariness and hopelessness seem to worsen since they can not be relieved.

The work, besides being important as family budgeting feature, is seen also as a playful possibility that would help the person to des-mind the aged for some period of time^5.22, meaning relief, as well as enabling confrontation with personal questions. However, the abandonment of the occupation was the alternative found for the condition of life and disease of the cared for. This caused these caregivers being forced to change their plans for life.

Besides abandoning labor occupations, the caregivers were unanimous in considering the abandonment of health to take on the task of caring, reporting self-neglect and physical symptoms:

This diabetes undermines everything because of this pressure [...] my doctor got angry with me, said I'm not taking care of me right, do not measure my glucose, I do not plan consultations, I am not going to the doctor at the right time (C4).

I'm so with a weakness, [...] because I feel tired, have to move quickly, do everything quickly. [...] I feel overwhelmed, there are days when it is easier, there are days when it is very, very heavy even (C2).

The self-neglect towards health seen in elderly caregivers and non-adherence to proper care jeopardize not only health, but also influence the quality of care provided to the elderly, since their competence to perform the care is determined by the ability to care for the self^5.25.

They face the task of caring for the elderly, the account of fatigue appears to be related to the absence of rest prospect on the short term, the progressive increase in the dependency of the elderly and the accumulation of roles of caregiver^5.26.

The abandonment of self leads to caregiver to a feeling of cancellation of their lives:

I changed many things, my dreams, my ideals, my goals, my goals ... I can not think about it. But we have dreams (C6).

In the speech one sees the paradox between necessity and possibility, the caregiver runs out losing the bond with their needs, experiencing the anguish that separates them from themselves, disregarding their own existential borders⁷.

If we look at the be there as constituted of concern, there is the effect of the da-sein anticipating the existence of the other; in that concern one ends up taking the place of another, but forgets himself, or care about one another and forget the true meaning of proper existence ⁵. This concern is not positive, since it takes an impersonal form.

Be caregiver launched in the world of being old

Care for elderly with some kind of mental or behavioral disorder becomes a challenge to the family as a disturbing and stressful event in the family life cycle. The person who takes responsibility for the elderly with mental or behavioral disorder experience seems to him to insecurity and disorientation on the unpredictability of old behaviors:

He got up, he was very nervous and aggressive, walking around the house, I got up running because I had to lock the doors and take the keys. Sometimes he went out on the street, I had to run after him. (C2)

The aggressiveness, the lack of control and the concern that the elderly may have, cause an uneasy climate generating a feeling of great distress in caregivers and causing them overload and physical stress. Caregivers must constantly be aware of disorientation, wandering, aggressive reactions requiring a broader and ongoing attention^27,28.

Feelings of impotence towards former behavior are also elucidated:

He does not feel anything, it's over! If you give food he eats it and if you do not give him, he does not eat (C4).

Many caregivers do not seem to conform to witness the family who could develop their life projects and integrate socially, turn into a dependent person, unprotected and taken by restrictions of all kinds²⁷.

Continuous care of the elderly with psychiatric disorder allows other feelings, such as anger unveiled by this caregiver:

Some days, he claims so many things ... I feel so angry! (C1)

The sense of anger can be explained considering a possible difficulty of caregivers in understanding the disease. A little understanding of mental and behavioral disorder generates disability before the behavior and attitudes of the elderly²⁸.

Another situation that the study of the subject elucidates with affective tone refers to the finitude of life:

I'm afraid of losing him, because we do not want that, I do everything, but do not want it to end, it could last twenty or thirty more years (C5).

When faced with the death of the elderly, the caregiver questions the inevitability of his own death⁶, his finitude. An end which can be sudden and, in principle, seems something outside and beyond our control, a restless and frightened man facing externality, the unpredictability of death ⁷.

If care of the phenomenon can provide the being of the da-sein⁷, the caregiver revealing feelings and staying ahead of troubles and woes was able to transcend and reach the Power-be-oneself , with the freedom to understand his world and himself, being able to question his own path in a genuine way.

Be with in religion finds a new meaning of care

If man is a being whose existence is given as being in the world, fundamental aspects of human existence like beliefs interpret the world, the history and himself²⁹.

For caregivers of seniors with mental and behavioral disorder the care task becomes an opportunity to express faith:

Then I give it to the hands of God, I am very happy, it will give much happiness, much peace, I will die quiet, at least I could take care of my mother, I did my part (C8).

Perceive that caring whilst interpreting and dealing as being able to provide contact with the sacred, caregivers find a mechanism to cope with the situation. Caring can be a sublimation mechanism, to exalt and sublime care through faith and religion can give a new meaning and significance to what is experienced^{30, 31}, providing assurance and comfort to perform the task. Also, caregivers with religious and spiritual beliefs seem to accept better and feel supported, contributing to the reduction of internal conflicts and overload by the challenges of occupation^{32, 33}.

Decadent and immersed in inauthentic life is that man seeks his true path to open up in search of possibilities for existence, clinging to their beliefs recreating self and proper practices. Care may become a potential space for the maturation and development of the authenticity of being⁷.

CONCLUSION

The study allowed an approach to the caretaker in an ontological perspective, going beyond, reaching the essence and the meaning of being. Thus, the caregiver is looked at in its existence and understood in feelings, experiences and meanings, understood not as a mere caretaker, but as a human being who feels overwhelmed and forgotten, waiting to be heard, seen and cared for.

Therefore, it is suggested that they are the target audience for attention in FHS units, ensuring them a space to support physical and emotional health and develop skills for dealing with mental and behavioral disorders in the elderly. It is recommended that, when working with informal caregivers of elderly, cultural aspects, women's role in the history of care, and family relationships and social value systems should be considered, to be able to establish strategies of care for the informal caregiver according to experiences.

One of the limitations of the research is that the results are presented by experience and intentionality of the subjects facing the care phenomenon, since it is the subject is who describes the object and its relations from its own point of view. Therefore, the object becomes a specific element, so that the results described are characteristic for this study population. On the other hand, in the conceptions and interpretations of the phenomenon also incur the intents of the researcher. However, the importance of this study is housed in the same context, that is, the subject's experience in the care of the elderly that allows closing in to an understanding of the caregiver phenomenon.

REFERENCES

1.Organização Mundial da Saúde. Relatório Mundial de Envelhecimento e Saúde. Genebra (SWI):OMS; 2015.

2.Clemente AS, Loyola AI, Firmo JOA. Concepções sobre transtornos mentais e seu tratamento entre idosos atendidos em um serviço público de saúde mental. Cad Saude Publica.2011; 27: 555-64.

3. Maia LC, Durante AMC, Ramos LR. Prevalência de transtornos mentais em área urbana no norte de Minas Gerais. Rev Saúde Publica. 2004; 38: 650-56.

4.Nascimento LC, Moraes ER, Silva JC, Veloso LC, Vale ARMC. Cuidador de idosos: conhecimento disponível na base de dados LILACS. Rev Bras Enferm. 2008;61:514-17.

5.Fernandes MGM, Garcia TR. Atributos da tensão do cuidador familiar de idoso dependente. Rev esc enferm USP. 2009; 43: 818-24.

6.Pimenta GMF, Costa MASMC, Gonçalves LHT, Alvarez AM . Perfil do familiar cuidador de idoso fragilizado em convívio doméstico da grande região de Porto, Portugal. Rev esc enferm USP. 2009; 43: 609-14.

7.Heidegger M. Ser e tempo. 12ª ed. São Paulo: Vozes; 2009.

8.Penha J. O que é o existencialismo? 12ª ed. São Paulo: Brasiliense; 2004.

9. Morais SCRV, Monteiro CFS, Rocha SS. O cuidado de enfermagem à mulher vitima de violência sexual. Rev Texto Contexto Enferm.2010; 19:155-60.

10. Oliveira MFV, Carraro TE. Cuidado em Heidegger: uma possibilidade ontológica para a enfermagem. Rev Bras Enferm. 2010; 64: 376-80.

11.Husserl E. Ideias para uma fenomenologia pura e para uma filosofia fenomenológica. Aparecida, (SP): Idéias e Letras; 2006.

12.Broomé RE. The selected works of Rodger E [site da Internet]. Descriptive phenomenological psychological method: an example of a methodology section from doctoral dissertation [citado em 25 jul 2015] Disponível em: http://works.bepress.com/cgi/viewcontent.cgi?article=1017&context=rodger_broome

13.Moreira, DA. O método fenomenológico na pesquisa. São Paulo: Pioneira Thomson; 2002.

14.Campos EL, Cruz S, Mattos ED. Perfil de cuidadores familiares de idosos no Município de Jataizinho – PR.UNOPAR Cient Ciênc Biol. Saúde 2010;12(3):57-66.

15.Gonçalves LHK, Costa MAM, Martins MM, Nassar SM, Zunino R. Dinâmica da família de idosos mais idosos no contexto de Porto, Portugal. Rev Lat- Am Enfermagem. 2011; 19: 9.

16.Santos AA, Pavarini SCI. Perfil dos cuidadores de idosos com alterações cognitivas em diferentes contextos de vulnerabilidade social. Rev Gaucha Enferm.[Scielo-Scientific Eletronic Library Online] 2010 [citado em 10 jul 2015]. 31(1)115-22. Disponível em: http://www.scielo.br/scielo.php?pid=S1983-14472010000100016&script=sci_arttext

17.Braz E, Ciosak SI. O tornar-se cuidadora na senescência. Esc Anna Nery. 2009; 13: 372-7.

18. Falcão DVS, Bucher-Maluscke JSNF. Cuidar de familiares idosos com a doença de Alzheimer: uma reflexão sobre aspectos psicossociais. Psicol Estud. 2009; 14: 777-86.

19. Flores GC, Borges ZN, Budó MLD, Mattioni FC. Cuidado intergeracional com o idoso: autonomia do idoso e presença do cuidador. Rev Gaucha Enferm [Scielo-Scientific Eletronic Library Online] 2010 [citado em 10 jul 2015]. 31:467-74. Disponível em http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-14472010000300009

20.Oliveira APP, Caldana RHL. As repercussões do cuidado na vida do cuidador familiar do idoso com Demência de Alzheimer. Saúde soc. [Scielo-Scientific Eletronic Library Online] 2012 [citado em 02 jun 2014]. 21:675-85. Disponível em: http://www.scielo.br/scielo.php?pid=S0104-12902012000300013&script=sci_arttext

21.Cruz DCM, Loureiro HAM, Silva MANCGMM, Fernandes MM. As vivências do cuidador informal do idoso dependente. Referência. 2010; 3(2): 127-36.

22.Fonseca NR, Penna AFG, Soares MPG. Ser cuidador familiar: um estudo sobre as consequências de assumir este papel. Physis (Rio de Janeiro). 2008;18: 727-43.

23. Pinto MF, Barbosa DA, Ferreti CEL, Souza LF, Fram DS, Belasco AGS. Qualidade de vida de cuidadores de idosos com doença de Alzheimer. Acta Paul Enferm. 2009; 22: 652-57.

24.Brito ES, Rabinovich EP. A família também adoece! Mudanças secundárias a ocorrência de um acidente vascular encefálico na família. Interface comum saúde educ. 2008; 12 (27):783-94.

25.Clock D, Godoy GM, Petry G, Capistrano JW, Spena RJ. Quem cuida do cuidador. Caderno de Publicações Acadêmicas [periódico na Internet]. 2009 [citado em 20 jun 2015]; 1(1): [aproximadamente 4p.]. Disponível em: https://periodicos.ifsc.edu.br/index.php/publicacoes/article/view/79/43

26.Minayo MCS. Antropologia, saúde e envelhecimento. Rio de Janeiro: FIOCRUZ; 2002.

27. Sant´Ana MM, Pereira VP, Borenstein MS, Silva AL. O significado de ser familiar cuidador do portador de transtorno mental. Rev Texto Contexto Enferm. 2011; 20: 50-8.

28. Avelino ACA, Cunha AAR, Silva PMCS, Azevedo EB, Silva JB,Ferreira Filha MO. O cuidado ao idoso portador de transtorno mental sob a ótica da família. Referência. 2013; 3(8): 75-83.

29.Sales CA. O ser-no-mundo e o cuidado humano: concepções Heideggerianas. Rev enf UERJ. 2008; 16: 563-8.

30.Silveira TM, Caldas CP, Carneiro TF. Cuidando de idosos altamente dependentes na comunidade: um estudo sobre cuidadores familiares principais. Cad Saude Publica. 2006; 22:1629-39.

31. Cartaxo H. G. O. Vivência dos cuidadores familiares de idosos dependentes: revelando estratégias para o enfrentamento do cotidiano. Estud Interdiscip Envelhec. 2012; 17(1): 59-74.

32. Brondani CM, Beuter M, Alvim NAT, Szareski C, Rocha LS. Cuidadores e estratégias no cuidado ao doente na internação domiciliar. Rev Texto Contexto Enferm [Scielo-Scientific Eletronic Library Online] 2010 [citado em 02 jun 2015]. 19: 504-10. Disponível em: http://www.scielo.br/pdf/tce/v19n3/a12v19n3.pdf.

33.Marques AKMC, Landim FLP, Collares PM, Mesquita RB. Apoio social na experiência do familiar cuidador. Ciênc Saúde Coletiva. 2011;16 supl 1:S945-55.