Social representations of main caretakers of patients with dementia

Abstracts

INTRODUÇÃO: As síndromes depressivas e demenciais são os problemas mentais mais prevalentes na população idosa. A qualidade de vida de pacientes com demência depende, primordialmente, daqueles que são responsáveis pelos seus cuidados. Assim, é fundamental a realização de estudos que possam descrever as percepções, interpretações e reações dos cuidadores frente aos diversos tipos de síndromes demenciais, as estratégias encontradas para enfrentá-las associadas aos diferentes atores e a mobilização de referentes culturais em torno da experiência da demência. MÉTODO: No presente estudo, com base na teoria das representações sociais, foram entrevistados 15 cuidadores, visando compreender como estes reconhecem e vivenciam a síndrome demencial e quais são as ações realizadas por eles para lidar com a mesma. RESULTADOS: A análise de conteúdo indicou que o prejuízo nas atividades instrumentais foram os primeiros sinais que alertaram os cuidadores para o problema de seus familiares. Ao mesmo tempo em que os cuidadores consideram eventos de vida, organicidade e hereditariedade para explicar o problema do familiar, levantam também outros aspectos que estão intimamente associados ao contexto sociocultural, influenciando as ações diante das manifestações da síndrome demencial. CONCLUSÃO: Essas são informações essenciais para o planejamento de intervenções e políticas públicas adequadas às características dessa população.

Cuidadores; demência; representações sociais; envelhecimento

ORIGINAL ARTICLE

Social representations of main caretakers of patients with dementia

Daniela Chiari Rizzo^I; Virgínia Torres Schall^II

^IMSc. student, Instituto de Pesquisa René Rachou, Fundação Oswaldo Cruz (FIOCRUZ), Rio de Janeiro, RJ, Brazil. Psychiatrist, Prefeitura de Belo Horizonte, Belo Horizonte, MG, Brazil

^IIPhD in Education, Pontifícia Universidade Católica do Rio de Janeiro (PUCRJ), Rio de Janeiro, RJ, Brazil. Researcher, Instituto Pesquisa René Rachou, FIOCRUZ

Correspondence

ABSTRACT

INTRODUCTION: Depressive symptoms and dementia are the most prevalent mental problems among the elderly. The quality of life of patients suffering from these disorders depends mostly on their caretakers. Therefore, it is of paramount importance to conduct research studies describing the caretaker's perceptions, interpretations and actions in relation to different types of dementia disorders, coping strategies developed associated with different actors and mobilization of cultural references connected to the experience of dementia.

METHOD: In the present study, based on the theory of social representations, 15 caretakers were interviewed, focusing on their experiences and feelings about this disorder and their coping strategies.

RESULTS: Content analysis indicated that decreased instrumental activities were the first signs alerting caretakers about their relative's problem. At the same time as caretakers consider life events, organicity and heredity to explain their relative's problem, they also raise other aspects, which are intimately associated with the sociocultural context, influencing the actions taken regarding the dementia syndrome.

CONCLUSION: This is essential information to plan interventions and public policies adapted to the characteristics of that population.

Keywords: Caretaker, dementia, social representation, ageing.

Introduction

Population aging is a worldwide demographic phenomenon that has led to a change in the age group structure of the population, increasing the relative weight of people aged 60 years or older. As a consequence of decrease in fecundity, the Brazilian population aging process has been growing. This can be exemplified by an increase in the elderly population in the total population of the country. Until the 1960's, the Brazilian population was extremely young, about 52% younger than 20 years and less than 3% older than 65 years. The proportion of inhabitants older than 60 years more than doubled between 1950 and 1991 (from 3.5 to 7.3%), and the proportion of those older than 65 years more than tripled over the same period (1.7 to 4.6%) (Brazilian Institute of Geography and Statistics, Demographic Census 1950-1991). Not only the group of elderly has grown more than the other population groups, but there is also an increase in number and proportion of the very elderly, aged 80 years or more.¹

The elderly have more health problems than the general population. When discussing the disease present in the third age, it is important to remember the share that belongs to mental disorders. Depressive symptoms and dementia are the most prevalent mental problems among the elderly. Dementia can be defined as a syndrome characterized by decline in memory, associated with deficit of at least another cognitive function (language, gnosis, praxis or executive functions), with enough intensity to interfere with the individual's social or professional performance, in the absence of acute impairment of the awareness state.²

The prevalence of dementia duplicates at every 5 years after 60 years of age, resulting in an exponential increase with age.³ A review of prevalence studies shows mean rates ranging from 0.7% in the age group 60-64 years to 38.6% in the age group 90-95 years.⁴ In Brazil, there are few studies on dementia prevalence. A population-based study performed in the municipality of Catanduva (SP, Brazil) assessed 1,660 individuals 60 years or older and found prevalence rates ranging from 1.3% in the age group 65-69 to 36.9% in the age group 85 years or older.⁵

Since dementia is a chronic and progressive disease, there is a time when home care can generate intense overload for the patient's caretakers.⁶ "Caretaker" is understood as the individual responsible for providing or coordinating the resources required by the patient.⁷ Approximately 80% of caretakers of a patient with dementia are family members that provide care to this individual at home.⁸ Levesque et al.⁹ stress that formal and informal social support protects the psychological well-being of the relatives providing care to the patient. Formal, organized and efficient care to dependent elderly is nearly inexistent in Brazil, so the family is responsible for such care.¹⁰

The sociocultural aspects of aging are becoming more important in successful care and treatment of elderly people. The current choices of treatment for individuals with dementia favor care in the community and at the individual's own home, setting in which the culture itself can be more openly expressed than in settings of institutional care. Elements such as family, social relationships, culture and health services have an impact on how dementia is experienced.¹¹ In the family, the mechanisms used to adapt to a new situation are quite varied and may influence disease awareness. Another major influence is the type of knowledge of diagnosis and difficulty in sharing what is taking place.¹² In the domestic setting, social groups put into practice a variety of knowledge, beliefs, values and attitudes that surround the health, disease and care process.¹³ For that reason, it is interesting to analyze how caretaking families describe and interpret the disease and how these representations affect family relationships, care practices and search for health treatments.

Thus, this study, based on the theory of social representations, aimed at understanding how the relatives of a patient with dementia recognize and experience dementia and which actions they perform to cope with this disorder. This is essential information to plan public policies adapted to the characteristics of the target population.

Method

The theoretical and methodological framework guiding this study is that of social representations, understood as modalities of practical knowledge focused on communication and on understanding the social, material and ideational context. They are forms of knowledge that are manifested as cognitive elements - images, concepts, categories, theories - but are never reduced to cognitive components.^14,15 Social representations are socially developed and shared, contributing to the construction of a common reality, which allows for communication.

Caretakers of patients with dementia living in Belo Horizonte (MG, Brazil) were selected to perform this study. All were selected by indication of geriatricians and psychiatrists from public (health centers Dom Cabral and São Jorge, linked to the City Hall of Belo Horizonte), health insurance (psychiatry and psychology clinic of Hospital Militar and geriatric clinic of the Departamento de Estradas e Rodagens) and private health services that provide care to the respective individuals with dementia. To be included in the group, it was necessary to indicate the relative that was the main caretaker of the patient, and the individual should have clinical diagnosis of dementia (only the most common forms: Alzheimer, vascular, Lewy bodies, frontotemporal, and Parkinson) according to updated definitions of nosology, associated or not with neuroimaging examinations.

A qualitative approach was chosen to rebuild the universe of representations associated with dementia presented by the elderly. A semi-structured script was used for the interviews, developed with the aim of investigating ways of thinking and acting regarding dementia, as well as identifying problem recognition and attitude when coping with it. The manifestations and problems associated with signs/symptoms of dementia, and universe of representations and behaviors were investigated. The saturation criterion was used to establish the number of interviews, and a total of 15 was considered enough to reach defined requirements. The instrument used to identify sociodemographic variables was the sociodemographic questionnaire based on Oliveira & Oliveira,¹⁶ developed with the aim of investigating population age group structure, income, gender, marital status, and professional insertion.

The content analysis technique was chosen to analyze the data obtained from qualitative investigation.¹⁷ Its goal is to understand the meaning of communication, and especially to change the focus to another significance, another message through or along the primary message.¹⁷

Data analysis was performed in two stages. In the first stage, the data obtained from each interviewee were analyzed independently. After transcription and data processing of all interviews, the texts were analyzed according to categories identified in coding schemes. Such coding schemes were built based on a systematic reading of all the interviews. That gave origin to categories of recurrent information.

Thirteen caretakers preferred to be interviewed at home, and some justified this preference due to the need of being close to the patients to help them if necessary and because they had no other person to look after them. Only two chose to be interviewed in the health services where their relatives were being followed, considering privacy and proximity offered by such sites.

After approval by the research ethics committee, the researcher introduced herself as a researcher for the Instituto de Pesquisa René Rachou, Fundação Oswaldo Cruz, explained the study, required the caretaker to sign a consent form, as well as permission to record the interview. She always tried to develop a dialogue to make the interviewee comfortable and followed the conversation flow until covering all the items in the semi-structured interview. Recorded interviews were later transcribed. The interviews lasted between 40 minutes and 1 hour and 30 minutes. The names mentioned after excerpts of interviewees' statement (in results and discussion) are fictitious.

Results and discussion

Characteristics of caretakers

The 15 interviewees' age ranged between 34-83 years, 14 were female and one was male. Nine are daughters, two are nieces and one is sister of the patient, but one of the nieces is actually not a blood relative. Three are married to the patient. Five caretakers have a job and their own income, which ranged between three and 10 minimum wages. They accumulate the activities of a job and the care provided to the patient in their homes. Eight caretakers do not have a job, and one of them earns a minimum wage to care for the relative, paid by the patient himself. Two are retired and have an income ranging between five and 20 minimum wages. Family income ranges between three and 23 minimum wages. Three caretakers have incomplete primary school, and two completed primary school. Four have complete high school, and six have a college degree. Time during which they have been caring for the patient ranged between 4 months and 23 years, and five had already been caring for their relatives for at least 10 years, and nine between 2 and 5 years.

Presentation and interpretation of categories

After a fluctuating reading of the set of communications, seven categories and 20 subcategories were identified to determine theme specification. After a discussion between both participants of the study (student and advisor), these categories and subcategories were organized into five major themes to guide the treatment of obtained results and interpretation: first signs alerting the caretaker about the existence of a problem with the relative; interpretations of a sociocultural, historic and/or biologic origin; caretaker's reactions to changes in the relative; difficulties faced by the caretaker to care for the relative; caretaker's relationships with health professionals.

The first three themes concerning the interviewees' perceptions, interpretations and reactions to changes presented by their respective relatives were selected to write this paper. These three themes contribute to a better understanding of the universe of representations about dementia by the caretakers and their consequences as to treatment and care actions.

First signs alerting the caretaker about the existence of a problem with the relative

This theme arose from the following semi-structured interview question: "How did you notice your relative was having a problem?" To answer this question, interviewees described one or more signs listed below.

In their narratives, three caretakers recognized memory decline, which is a primary requirement for the diagnosis of dementia (" she forgets things sometimes, she loses many documents, she forgets where she is and turns everything upside down" - Lídia), and four of them recognized disorientation (" he went to the bakery after a while my mother called me and said: 'your father hasn't returned yet.' Then, we would walk around the neighborhood and soon find him, sometimes we went through hard times, this happened about five times. Once he almost ended up in Sabará "- Célia) as the first signs alerting them to their relative's problem. Three recognized manifestations of cognitive change in communication ability ("The family started realizing that she said things that didn't make sense, sometimes she couldn't understand what we were saying, and then we started to notice it" - Joana) and one caretaker identified the non-recognition of familiar people (agnosia) as indicators of a change in the patient (" he started forgetting the names of his grandchildren, children. We used to say: 'dad, this is M.' Then he said: 'who is M.?' Then I had to say: "it's your granddaughter.' We noticed something was not right "- Célia).

Visual hallucinations ("she started seeing something different from what it really was. For instance, once there was a fruit in the fruit basket, she called me in a low voice: 'come here, there's a viper in the fruit basket.' A viper, it's a snake, then I said, 'no, mother, this isn't a viper, it's just a fruit' - Clarice) were the first signs of dementia for two caretakers, and mood changes for three of them (" she was really enjoying laying down in bed, sad, but she was never like that "- Luíza). Although the statement above exemplifying visual hallucinations is probably an example of paraphasia, the interviewee perceived this manifestation as important in the identification of a problem, since she considered it as a hallucination.

All caretakers described behavioral symptoms arising during the care process. The most frequent behavioral changes mentioned by the caretakers are repetitive mannerisms (the act of sweeping "compulsively, without stopping"), escape, agitation and verbal and/or physical aggressiveness. One interviewee perceived the possibility of a disease affecting the relative after observing behavioral changes, which made the patient become increasingly more aggressive. The fact that this patient has always been considered "very nervous" seems to have contributed to a delay in disease perception, due to the association of initial signs of dementia with her strong personality (" we always see her aggressive, nervous, since all her life she has been nervous that's how we started noticing something she was nervous in a different way she used to get nervous, talked a little and calmed down, but then she started getting different, she wanted to attack me" - Clara).

Manifestations of progressive impairment of daily instrumental activities, such as handling money and performing routine chores (for example, cooking, washing clothes, sewing), were the most frequently described as a problem in the relative, and were reported by seven caretakers.

The first symptom was no longer doing what she usually did very well For example, she started washing the pans and stopped, she sat down at the sewing machine and stood up... she left and took a long time and forgot what she should do. For instance, she liked to sew, she was a seamstress, she used to come back home without the line or, for example, she brought a zipper or nothing or lost the money... (Maria)

By the end of the year, it drew my attention because she got her Christmas bonus, almost 6 thousand reais on December 15th. On January 3rd, she had only 70 reais and didn't know what had done with the money and all her bills were due, she hadn't paid anything, then I thought there was something wrong... (Hilda)

The first signs alerting these caretakers are pertinent for our study, since they provide means to evaluate disease stage - in the case of Alzheimer's disease (AD) - in which the caretakers perceive that a problem is affecting their relative. For most interviewees caring for patients with AD, the signs drawing attention to this problem were compatible with those found in the intermediate stage of the disease, in which there was initiative of searching for medical help. Dementia starts with very mild memory symptoms, which in general are not perceived or considered by caretakers as reasons of concern for the relative's health ("Since they were petty things, it was nothing that, say, could be causing trouble to her or to those around her, they were subtle things" - Lídia). Diagnosis is commonly performed after a 3-year disease course, period during which a drug treatment could be more efficacious.¹⁸ Only three caretakers - two daughters, with college degree, and one wife, with complete high school - perceived milder memory impairments that are compatible with the mild stage of dementia. Changes in cognitive domains, which interfere with the ability to handle money and occupational performance, were the most frequently reported signs. Therefore, perception of most caretakers on their relatives' health status was associated with the performance of instrumental activities.

Interpretations of a sociocultural, historic and/or biologic origin for changes in the relative

Based on the perceptions of the first signs of dementia and changes in the relative caused by the disease, caretakers make their own interpretations about these changes.

Sociocultural and historic origin

Caretakers combine the meanings of dementia with striking life events within a specific historic and sociocultural context to interpret the disease. Twelve caretakers pointed their relatives' life stories to justify changes, considering affective and/or material and/or social aspects. Six of them considered aspects of affection relationship - absence of love or marriage, or love losses, or an improper behavior in love relationships with the opposite gender - as causes for dementia.

... maybe a love, my father died too young, an unrequited love an abandonment, abandonment of love then, I think that love, if we have faith in God, love leads you to dementia, to terrible diseases. This is my way of thinking love is very important. When my father died, she was in her forties my father passed away, and she lost his love, then she had another person in her life for 20 years that left her... (Paula)

Considering the life history of patients in its material and social aspects, attachment to money and home, loss of the job considered as ideal or excessive work, history of maternity and modernity stress were reported as causes of the patients' disease by most caretakers. These interpretations of a psychosocial nature refer to the idea that dementia is somehow under the patient's domain; therefore, they are "responsible" for being sick or not. An interviewee provided more indications that strengthen the idea the dementia can be determined by characteristics of the patient's personality and mood, and thus "controlled" based on changes in attitudes (" she was a resentful person that's what led her to dementia when she was very young my mother is a difficult person, a difficult Italian woman, even for her children this Alzheimer's disease makes you even worse when you're not humble "- Paula).

The ideas of disease causality described by the interviewees are similar to the associations evoked by Latin caretakers to explain the causes of the disease reported in a study by Hinton & Levkoff.¹⁹ They report histories attributing disease onset and course to the context of traumatic events for the elderly. For Latin families, dementia onset or worsening were associated with traumatic events and painful affective experiences (such as loneliness). Traumatic events can consist of family fragmentation, due to migration, discrimination, children's negligence, tragic deaths, economic difficulties, and loss of family devotion.

Cultural stereotypes of aging and coexisting medical problems also seem to have influenced the caretakers' notions on dementia in this study and are in accordance with a study conducted by Ikels.²⁰ He reveals how a number of factors, including low expectations in relation to the low-education elderly, cultural stereotypes of aging and coexisting medical problems, lead to poor valuing of symptoms, such as memory loss in the elderly of a rural area in China. In the present study, six caretakers considered the possibility of the first signs of the disease being part of normal aging process, and five caretakers associated disease manifestations with preexisting or coexisting mental disorders, resulting in a delay to acquire more awareness of the disease by the interviewees. Such interpretations may help understand the fact that milder memory impairments in relatives were not noticed by them.

... it took a long time for us to see it, we thought she was just tired, she's getting weak-minded too early we thought: 'maybe she's getting weak-minded,' but N. was more alert, and she noticed that she was sick, she started doing some treatments with her... (Maria)

... when she came from São Paulo 20 years ago, her condition was critical, mentally critical she has a history of madness in the family, her mind is really disturbed I don't know what leads a person to have a mental problem, because you know so many people that suddenly have a mental problem, and you don't even know why... (Ana)

Biological origin

Although most caretakers consider dementia as a result of past sufferings, they do not know the biological and incurable nature of the disease. Some caretakers had previous knowledge of AD, even before the physician's diagnosis. These cases show how awareness of the disease is influenced by psychological mechanisms (disease denial) that may often prevent a higher perception and action toward the problem ("we started to notice: dad has Alzheimer's. Then, we read something here, a piece of information there no, it's not Alzheimer's, it should be something about his age, tiredness, depression" - Célia). Only three caretakers - two with complete high school (one is a nursing technician) and one with a college degree - interpreted changes in their relatives only as a consequence of brain changes caused by the disease, disregarding psychosocial causes.

Because the brain wears out in Alzheimer's, it really gets smaller, doesn't it? Neurons are lost, they wear out, then there's not enough strength for thinking, memorizing they get increasingly weaker... (Clarice)

Previous biomedical knowledge of the disease, through communication means or based on the experience of observing a close relative with dementia, seems to have influenced the considerations on the biological origins of the disease and on the possibility of perceiving and recognizing its early signs in the beginning.

NIt wasn't me who perceived it, it was my son: 'dad, something's wrong with mom, can't you notice it? You can see she talks nonsense, she's kind of light-headed...' Then I was in my car and I listened to a reporter interviewing a doctor at USP, in São Paulo and he was talking about Alzheimer's disease, and everything he said fit in all items... (Antônio)

Mental, social, affective, historic and cognitive elements are present to mediate these interpretations of reality by the interviewees. Based on tradition, memory and past, these caretakers build a social reality that also received the influence of communication means, theories, information of biomedical speech and of individuals with whom they interact.

At the same time caretakers consider life events, organicity and heredity to explain their relative's problem, they also raise other aspects, which are intimately associated with the sociocultural context. From the interviews performed, it is possible to observe that, at the start of problem recognition, caretakers search for several explanations for disease manifestations ("I don't know if it is a mental disorder, or if it's due to her age, or if it was after she fell down, you know, and hit her head..."- Lara). Disease awareness should be observed as a product of interaction between the psychosocial process and the cognitive deficit.¹¹ Farmer & Good,²¹ in their reviews of disease representations in medical anthropology, claimed that ideas about the nature and meanings of the disease often occur as histories located in a particular sociocultural context. The association between sociocultural aspects and personal experience influences the notions on health and disease regarding dementia.

The interviewees' perceptions and interpretations in relation to changes resulting from dementia will influence the moment of recognizing that a problem affects their relative, and consequently the decision making process.

Caretakers' reactions to changes in their relative

Search for medical help

The first reaction of most interviewees was to search for medical help after perceiving the manifestations of the problem in their relatives. Some obstacles against performing this action were reported by the caretakers: delay in obtaining medical care, lack of family time to conciliate visits to health services to their jobs and patient's resistance of seeing the physician.

... my sister noticed she was sick, she started doing some treatments with her, but the doctor took a long time to find out she could have this disease... I didn't know she had this disease, we only knew she was not well. We knew she had something then N., will al her limitations, because she works all day, started making appointments, taking her to the doctor you know how these things work, everything takes a long time and she has no time, and we couldn't understand what was going on... (Maria)

With regard to three caretakers - with complete and incomplete high school, and college degree - it was not the manifestations of dementia that prompted search for medical help, but signs of physical problems of different types. In the patients receiving care by these three interviewees, diagnosis of dementia was performed as a consequence of a more overall assessment by the health team, and not as a result of a specific demand related to dementia by the caretaker. The associations between the patients' manifestations and other mental disorders and/or memory loss as part of normal aging seem to be related to reactions of searching for medical services due to physical, and not mental problems. These three caretakers cannot distinguish the signs of dementia from coexisting or preexisting psychiatric problems, delaying acquisition of disease awareness and search for medical help ("she has always been light-headed" - Joana; "I don't know of it's a mental disorder or if it's caused by her age" - Lara; "she has a history of madness in the family she really has a disturbed mind" - Ana). The interviewees that only considered biological origins to explain the disease had greater promptness to action in relation to search for health services.

... he was too forgetful, getting lost in the street the supervisor of the home for the aged where her sister is noticed he was too absent minded once he went to the bank and blocked his own account because he forgot his password I immediately looked for a doctor I already knew that this was the problem, because his sisters had already had it one of them died 1 year ago... (Vilma)

Not only interpretations with psychosocial and/or biological origins interfere with the caretakers' reactions, but also the impact of dementia manifestations on them. A study performed by Hinton & Levkoff¹⁹ showed how identity loss and "loss of oneself" are identified signs, based on the narratives by caretakers of varied ethnicities, that are not part of the diagnostic criteria for dementia. "Loss of oneself" simultaneously expresses and builds feelings of guilt and sadness in part of the family and represents a culturally-formed meaning of dementia that crosses ethnic barriers. In the present study, the caretakers did not use this term to name the changes caused by dementia, but most of them recognized the problem when their relatives started losing the skills that identified them as individuals. Their initial response was searching for health care. Behavioral symptoms, such as aggressiveness, agitation (especially at night) and escape behavior also influenced the search for medical help (" some days he talks about leaving, he says he'll leave, this is one of the reasons why we took him to a psychiatrist she wants to run away all the time" - Ana).

Responsibility for affective and material care

In addition to search for medical support, the caretakers with higher income hired formal caretakers or people without technical knowledge to help them provide care to the patient. All interviewees reported attitudes that aim to make the contact with the relative as close as possible and to provide care affectively. To do so, the caretakers take their relatives home or leave their homes to spend day and night with their relatives in their own houses, valuing affective contact as an essential feature in elderly support.

At that time, I've already brought her to live in my place, because she was quite sick, my mother also got sick, my sister worked the whole day, she still does, so I have to bring her close to me so I can keep an eye on her, I've been doing this for about 12 years I really took her in, cared for her. I alone made the decision of bringing her to my house our reaction was to take care of her and provide tenderness, attention, love but without the knowledge a professional would have. (Maria)

Actions are defined by how caretakers interpret the situation they experience. As explained before, most interviewees used more psychosocial dimensions to explain the causes of dementia. Physiological, genetic and hereditary dimensions were also approached, but less frequently. This can help understand the contrast between the current study and the findings of a qualitative survey with the main caretakers of a support group to the relatives of patients with dementia and high dependence level, conducted in Rio de Janeiro.²² In that study, the individuals focused on the biological causes of the disease and were interested in all the information that could explain the pathological condition. According to a comment by the authors, this characteristic can be a consequence of the group setting and its coordination by health professionals, which, in the caretakers' imagination, have knowledge regarding the origin of the disease. For the caretakers in that study, the technical care of a formal caretaker is more important than the affective contact provided by the relative, opposed to what was observed in our study.

However, in the present study, even the caretakers who disregarded the psychosocial origins of the disease, only taking into account the biological origin, considered "care and patience" as important issues when providing care. It would be too simplistic to only associate the interpretations about the biological origin of the disease with technical care, with less emphasis on the affective aspect. The affective relationship between patient and caretaker, the caretaker's affective state and their personal characteristics will influence the caring process. One example is the case of the only 75-year-old male caretaker with two adult children that, despite considering only the biological origin of the disease, has cared for his wife with moderate dementia for 5 years, with no help by any formal caretaker or by another family member. Although he has his own income (more than 20 minimum wages) to hire a professional, he is responsible for taking care of his wife and house, suggesting a difficulty in distinguishing being a caretaker from being a husband.

Previous information and biomedical notions on dementia acquired during the care process provide subsidies to caretakers in the interpretation of the phenomena observed in the relative, thus influencing their reactions toward the problem and intrafamily arrangements. The psychosocial origins of the disease are combined with biomedical knowledge, favoring the patient, who receives a care that, besides being affective, considers their biological needs and is adapted to their physical changes secondary to dementia (" while she's still breathing, I won't leave her, because abandonment made her become what she is now "- Paula; "Everything I hear is good for her, I do it. She was choking too much, then I took her to a geriatrician, and she indicated a speech language therapist, then she still had the problem and I searched for a nutritionist and what is most interesting are the phases, at that time, when she used to choke, it drove me crazy" - Luiza).

Final considerations

As claimed by Schutz,²³ each social actor experiences and knows social fact in a peculiar way. It is the constellation of different individual information experienced in common by a group that allows composing a global picture of structures and relationships, in which the most important aspect is not the sum of elements, but the understanding of cultural models and particularity of determinations.

The results show that dementia is not detected early by the caretakers that perceive signs of the problem, especially when the relative has instrumental skills impaired by the disease. Physiological, genetic and hereditary dimensions were used by the caretakers, but less frequently, to explain the causes of dementia. Most interviewees focused on psychosocial and sociocultural dimensions. These different interpretations have a consequence on acquisition of disease awareness and, consequently, on attitudes toward the problem. Psychological mechanisms (disease denial) and ideas on disease manifestations associated with the stereotypes about aging or with preexisting or coexisting previous medical problems delayed acquisition of knowledge on dementia and search for medical treatment. Although most interviewees are aware of the biological nature of dementia, during the interview they made interpretations of causality between the patient's life history and dementia, which refers to the idea that changes secondary to dementia can be avoided or controlled by the patients. Better understanding of the disease provides more safety and sense of control to the caretaker. Having a logic explanation for the manifestations resented by the patient comforts the caretaker, since it allows them to perceive that the disease has nothing to do with their relationship with the patient or that behavioral symptoms of dementia are not purposely directed to them. It also provides the possibility of a treatment for the patient, and consequently, support and orientations to caretakers during the caring process.

It is also important to consider the limitations in the analysis of this study that are inherent to the design of a qualitative methodology and to the scientific practice of social sciences. For example: (a) this analysis elects a certain theoretical scope as a guiding landmark, which leads to the analyses valuing given aspects of reality to the detriment of others (theoretical limitations); (b) it prevents a direct generalization to the macro universe, requiring mediations and comparisons; (c) it attributed a high relevance to the interpretative processes in the researcher/interviewees relationship, which demands a continuous epidemiological vigilance; (d) it makes prediction of future behavior of the studied reality inadequate based only on the analysis of variables, since it concerns the individuals' historic action, allowing only assessment of likely scenarios of permanence and/or transformation/change of these relationships.^24,25 Despite its limitations, qualitative research is indispensable when the intention is to understand health phenomena based on values, attitudes and beliefs of the groups to which the action is directed. This study shows that more information should be provided to the population as to the signs and symptoms of dementia - always considering the sociocultural and economic context of those to which the information is destined - so that recognition if the disease can be performed more promptly by the elderly's relatives. Programs of formation and permanent education focused on health professionals working in basic care at the Brazilian Unified Health System, in the elderly health area, should be continuously developed. This would result in an improvement in early diagnosis of dementia, investigation of potentially treatable causes and proper treatment of patients with irreversible dementia, bringing positive consequences to main caretakers and to other family members. These could have a support to deal with behavioral and psychological manifestations of the disease and information regarding basic care (eating, hygiene), mitigating the difficulties arising during the caring process.

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Publication Dates

• Publication in this collection
  01 Dec 2008
• Date of issue
  Apr 2008

History

• Accepted
  23 Oct 2007
• Received
  18 Sept 2007