1. Theoretical framework

According to Eurocares, in Portugal, in October 2020 there were approximately 1.1 million IC (^{Eurocarers, 2020}). These are persons who provide care to someone with a prolonged illness or need, usually family or close person, and there is no remuneration, a schedule and/or vocational training for the provision of such care (^{Konerding et al., 2019}).

The IC performs a set of tasks in its routine that requires knowledge and training, such as management of care of Activities of Daily Living (ADL's), problem solving, decision making, activities that require communicative and organizational skills, among other anticipatory and surveillance care (^{Costa, Paúl, Azevedo & Gomes, 2019}).

Caring for a person with dementia, taking into account that their average life expectancy is 8.5 years after the onset of symptoms, involves important requirements that can lead to exhaustion, frustration and other adverse reactions to IC when the situation is maintained over time (^{Lane, Hardy & Schott, 2018}; ^{Ruisoto, Contador, Férnandez-Calvo, Palenzuela & Ramos, 2018}). These consequences can negatively interfere with the quality of life of IC in the personal, psychological, physical, social and economic domains where they often feel stressed and overwhelmed (^{Costa, Paúl, Azevedo & Gomes, 2019}).

Caregivers are increasingly required to have a greater knowledge and abilities, in order to face, as best as possible, the challenges that are posed to them while playing a fundamental role in the care of the elderly, especially with a diagnosis of AD. To this end, it is important to assess their level of literacy, which potentially influences the effectiveness with which IC's are committed to caring for (^{Jiang, Sereika, Lingler, Tamres & Erlen, 2018}).

Therefore, health literacy, according to the World Health Organization, is defined as the set of "cognitive and social skills and the person's ability to access, understand and use information in order to promote and maintain good health". It is also the ability to make informed health decisions during the day-to-day in various contexts. It enables people to increase their control over their health, their ability to seek information and to take responsibility. (^{World Health Organization, 1998})

This concept has been revised over time, however the European Health Literacy Consortium added that it involves people’s knowledge, motivation and skills to access, understand, assess and apply health information in order to promote it and prevent disease (^{World Health Organization, 2013}; ^{Almeida et al., 2019}).

It is verified that the concept was evolving from an individual perspective to a complementary and integrative perspective of the social component, empowering the individual to an informed and responsible decision-making process of their choices and decisions. It is also an indispensable tool for the individual's ability to exploit health systems and their health care provision (^{Rodrigues, 2018}).

In Portugal, the Action Plan for Health Literacy (2019-2021) aims to keep the person at the center of the intervention, continuously, consciously and with sustainability the level of Health Literacy of the population. However, it is important to improve it in the context of navigation in the National Health Service and the Health System (^{Arriaga et al., 2019}).

Improving the level of health literacy is expected to result in the acquisition of new knowledge, more positive attitudes, greater self-efficacy and positive health behaviours (^{Despacho nº 5988/2018 de 19 de junho do Gabinete do Secretário de Estado Adjunto e da Saúde. 2018}). Thus, it is intended to avoid the low level of literacy of the Portuguese population, since it entails individual and social costs, and is associated with low educational levels and access to information that cause the decrease of the autonomy of the person (^{Espanha, Ávila, & Mendes, 2016}).

Briefly, to what has already been mentioned, it should be noted that it is essential to train IC, due to the high psychological, physical and social overload. To this end, it is necessary to develop measures that promote empowerment, which support the decrease in the above levels and identify the needs of IC (^{Konerding et al., 2019}). Thus, in the present study, we intend to explore the level of health literacy of these caregivers in the provision of care to a person with AD.

2. Methods

In order to explore, the level of health literacy of the IC of the person with AD was initiated, an exploratory, descriptive and cross-sectional study was initiated, with a quantitative approach.

2.1 Sample

Of the 28 IC that make up the sample, 75% were female (n=21) and 25% male (n=7), with an average age of 54,04 years (( 12,46), with a minimum of 24 and maximum 79 years. Regarding the place of residence, 57,1% of the sample resided in the Central Region, 21,4% in Lisbon and Vale do Tejo area and 21,4% n in the Northern Region of Portugal. In relation to educational qualifications, 39,3% have higher education, 25% have secondary education and 17,9% the 4^th grade. Regarding the professional situation, 46,4% of the caregivers surveyed were employed full-time, 17,9% retired and 17, 9% unemployed.

Regarding the degree of kinship, 64,3% were sons, 25% spouses, 3,6% grandchildren, 3,6% nephews and 3,6% had no relationship with the person with AD. In relation to the years to provide care, on average the IC had been there for 4,18 years (( 2,41) to provide care (minimum 1 year and maximum 10 years) and on average, devote 12 hours (( 8h:09) during the day and the vast majority (82,1%) assumed this care for 7 days a week.

Of the present sample, 67,9% of the IC reported that they had someone to turn to if they needed help (of which IC, 78,9%, refer to being family) and the remaining 32,1% said they had no one to turn to. It should be noted that 60,7% of caregivers said they did not benefit from any kind of help, however, 39,4% were supported by the home services, day care centre and religious associations.

2.2 Data collection tools

For data collection, we used to complete an online questionnaire in Google Forms that remained available in the period from January to March 2021. The questionnaire consisted of four parts, the first consisted of the presentation of the study as well as its objectives including free participation in the study, the second part addressed questions about the sociodemographic profile of the IC the third on health literacy and the fourth comprised the Alzheimer's Disease Knowledge Scale (^{Carpenter, Balsis, Otilingam, Hanson & Gatz, 2009}), translated for the Portuguese population by José Monteiro and Tiago Coelho, in 2011. The scale scores were interpreted based on the document made available by the authors.

The dissemination of the questionnaires was made through social networks and various associations in Portugal, such as Alzheimer Portugal and its various delegations.

2.3 Procedures

In order to carry out the study, a favorable decision was obtained from the Ethics Committee of the Polytechnic of Leiria, according to Opinion No. CE/IPLEIRIA/02/2021. The IC was asked to confirm the reading of the informed, free and informed consent. Anonymity, confidentiality of data and the possibility of giving up at any time of the study were guaranteed, and the data collected were only used in the present investigation and were subsequently destroyed at its end.

The use of the Alzheimer's Disease Knowledge Scale (ADKS) was preceded by the authorization by the authors of the Portuguese translation, José Monteiro and Tiago Coelho, in 2011. The statistical treatment of the data was processed in the software Statistical Package for the Social Sciences® version 27, emerging the analysis of the use of descriptive statistical measures. It is added the use of WebQDA software for counting references and content analysis of the question related to the main difficulties identified by IC, later segmented by four categories, selected by three researchers.

3. Results

The study focused on the application of an electronic questionnaire to the IC of the person with AD, resulting in a sample of 28 participants. The sociodemographic characterization of IC revealed that the majority were female, with an average of 54,04 years (( 12,46), presenting mostly a degree of kinship with the person cared for. Thus, the motivations that are most evident for the care of the person with AD are affective motivation (78,6%), the traditional family model (35,7%), the individual history, relationship with the dependent person (32,1%) and the willingness to help (14,3%).

Regarding the need to obtain information, 35,7% of the IC mentioned that they resort "many times" to the neurologist; "sometimes", 50% to the family doctor and 35,7% to the Internet, "never", 46,4% to the nurse, 75% to the psychologist, 82,1% to the psychiatrist and 50% to friends.

The IC referred to having difficulties in several areas, which are grouped into 4 categories, as can be seen in the following table:

Regarding the needs felt, 67,9% of the IC identified that they had a deficit at the emotional level, 64,3% financial and 35,7% social. Regarding the characterization of the literacy of IC, with regard to the knowledge of the Statute of the Informal Caregiver (Lei 100/2019, 6 de setembro de 2019 - Diário da República), it is possible to observe that 28,6% reported having a very low knowledge, 21,4% low, 25% reasonable, 17,9% high and 7,1% very high. The IC, regarding the assessment of the level of knowledge of the way of providing care, 3,6% identified having a very low level, 7,1% low, 57,1% reasonable, 28,6% high and 3,6% very high.

With regard to the importance of acquiring more information, 92,9% of respondents classified it as very important to deepen their knowledge about the evolution of the disease; 92,9% on how to communicate with the family member; 85,7% learn new ways to deal with difficult behaviors; 82,1% know the limitations of the family member; 71,4% know the support resources that exist; 67,9% know how to adapt the house; and 78,6% know how to manage stress.

When asked about "who they consider useful to obtain information", 89,3% of the IC reported turning to health professionals to acquire information about an accurate diagnosis, 67,9% alternative treatments and 96,4% medication. In the same way that 50% turn to other sources (friends and family) to get emotional support to deal with the situation. Therefore, about practical advice to deal with day-to-day care, 57,1% of IC reported turning to health professionals and other sources.

4. Discussion

Considering the results obtained in the present study, it is verified that the sociodemographic profile of IC is in line with that mentioned by Ruiz-Adame Reina, et al., 2017 cit por ^{Costa et al., 2019}, since most are women (wives, daughters, granddaughters or nieces), with a variable level of education, employment and socio-economic status. The high number of hours to be cared for provides negligence in self-care, leisure and/or social activities that are in the background, making IC vulnerable to the development of depression, stress and lower quality of life (^{Bauab & Emmel, 2014}).

The main motivations identified by IC are the "affective motivations" and the "traditional family model", since they provide care due to a personal and non-financial relationship (^{Stall et al., 2019}). However, these motivations can influence the caregiver's well-being and the relationship of care, since they are closely linked to the quality of the relationship. Thus, the motivations for care have been associated with the positive meaning that caregivers find in care (^{Quinn et al., 2019}).

It is also important to consider the main difficulties mentioned by the IC, described in Table 1. The "neurobehavioral changes" in particular the "cognitive decline" and the "dependence" standout; "management of personal and professional life" in particular "personal organisation"; and in the category "uncertainties of personal training", the "knowledge of the DA". These difficulties are often narrated in the literature, since with the evolution of the pathology there is a deterioration of the residual capacities of the elderly that lead to the needs of IC strain, learning new ways of dealing with the person cared for, managing time and obtaining new information about AD (^{Lin, Shih & Ku, 2019}).

It is said that 57,14% of IC have an intermediate level, i.e., 3 in the way they provide care, through the analysis of the Likert scale.

It can be seen that there is a high number of IC that considers the acquisition of more information on the provision of care "very important". This is in line with what is based on the Despacho nº 5988/2018, de 19 de junho, which promotes the Literacy and Care Integration Program, through pedagogical campaigns in the media, endorsed with digital repositories with adequate information, accessible to different population groups and literacy levels.

Regarding the sources of information (family doctor, nurse, neurologist, psychologist, psychiatrist, friends and internet), the results suggest that IC consider that the most reliable information is obtained through health professionals. Therefore, and taking into account the state of the art, it is concluded that caregivers are abandoning the role of passive beneficiaries of technical instructions, having an active participation in the learning process and in the establishment of objectives (^{Almeida et al., 2019}).

The application of ADKS in IC is translated into the analysis of their health literacy, which allows the identification of disparities in knowledge about AD, promoting the creation of new health literacy programs.

As can be seen in Table 2, there are four questions answered correctly by all respondents and 18 mostly correct, which suggests a satisfactory level of health literacy in relation to AD. It is added that there are five questions in which respondents have shown to be subdivided on the correct answer.

With regard to the average life expectancy of the person with AD, as mentioned above, it is concluded that it is 8,5 years, on average (^{Lane, Hardy & Schott, 2018}). With regard to IC immediately assuming responsibility for these people, it is important to explain that the diagnosis of the disease does not automatically eliminate the right to autonomy. However, as the disease progresses, the ability may deteriorate and the person is likely to lose his legal capacity to make decisions (^{Griffiths, Mustasaari & Mäki-Petajä-Leinonen, 2017}).

Regarding the practice of physical exercise, as a strategy to regulate wandering, the literature reports that it can relieve depression and sleep disorders in people with AD. Therefore, physical activity may be an additional treatment to pharmacological treatment to reduce or prevent these symptoms (^{Veronese, Solmi, Basso, Smith & Soysal, 2019}).

Finally, with regard to the symptoms of AD, it is considered that initially there is a progressive deterioration of episodic memory, leading to mild amnestic cognitive impairment, followed by a state of agitation, aggression and psychosis (in advanced stages of the disease)(^{Lane et al., 2018}).

It should be noted that the IC answered predominantly incorrectly 3 questions, which is the number question: 11 "Most people with AD live in nursing homes"; 18 "Having high cholesterol can increase a person's risk of contracting AD"; and 26 "Having hypertension may increase the risk of developing AD". With regard to the first question, it can be noted that it is false, since ^{Struckmeyer & Pickens (2016}) claim that the majority of people with AD remain in their homes accompanied by an IC. In relation to the other issues, these address the risk factors of AD, as advocated by ^{Lane et al. (2018}) which states that the risk factors of this pathology are also vascular disorders that include hypertension and cholesterol metabolism.

Taking into account the above results it is possible to affirm that a good understanding of the main components of IC health literacy can contribute to the development, evaluation of measures and interventions to provide support in the care of the elderly (^{Jiang et al., 2018}).

Health Literacy should preferably be promoted in the different contexts of people's daily lives, and it is increasingly important to provide tools that facilitate the interpretation of information so that they can make decisions and options consciously (^{Almeida et al., 2019}).

According to the Manual of Good Practices Health Literacy, there are several recommendations for the promotion of health literacy in Portugal, such as reducing the complexity of the health and social care system; and the support of initiatives that improve health literacy, in particular aimed at the most vulnerable groups in Portuguese society (^{Almeida et al., 2019}).