Promoting active aging by family caregivers of elderly people with Alzheimer's disease in family health units

Samara Cristina Guimarães de Azevedo¹, Maria Edielly da Silva Rodrigues², Luciane Almeida Casarin³

^1-3Federal University of Rondonópolis. Mato Grosso (MT), Brazil.

Introduction

The end of the 20th century was characterized by a rapid process of population aging, making it one of the most significant social transformations of recent years. This process occurs in different ways, depending on biological and genetic characteristics and psychosocial and environmental factors, and these can determine whether people age healthily or are accompanied by chronic diseases, such as dementia, including Alzheimer's disease (AD).

The World Health Organization states that approximately 55 million people live with some form of dementia worldwide, and estimates that this figure will rise to 139 million by 2050.¹ Data from the Ministry of Health indicate that around 1.2 million elderly people live with chronic AD in Brazil, and 100,000 new cases are diagnosed every year.²

AD is the most common chronic dementia condition in people over the age of 60. It is characterized as a degenerative, slow, progressive, irreversible disease that results in the loss of brain cells. This compromises physical, mental, and social integrity and autonomy, generating stressful situations and impacts that interfere with the well-being of the elderly person living with the disease³. This condition may require the support of a caregiver, usually a family member, who takes on the responsibilities related to living and care needs.

In this sense, the interaction between the Family Health Strategy (FHS) and the caregivers of people living with AD is fundamental. This approach not only seeks to promote health and prevent disease but also considers the quality of life of the elderly person-family caregiver binomial in the face of significant care challenges, emphasizing the role of nursing that considers the physical, emotional, and social dimensions of care.⁴

When considering the social dimensions of care beyond the care routine, family caregivers must develop practices to promote active aging and the integration of elderly people living with AD. Although AD is a condition of progressive dependence, there are possibilities for encouraging them to grow old in a whole and participatory way.

This promotion should be a shared responsibility between family caregivers, the health team, and society. The active aging policy, according to the World Health Organization (WHO), stresses that active aging is not just an individual issue, but a process that public policies and social initiatives should facilitate, to develop actions and programs for the social inclusion of the elderly population with the aim of insertion, integration and effective participation in society, stimulating autonomy, prevention of diseases, promotion, protection, recovery and rehabilitation of health.⁵

The policy framework for active aging, as advocated by WHO⁵, comprises four pillars: participation, lifelong learning, health, and safety. Family caregivers, through their interaction with the FHS, play a vital role in implementing these pillars by encouraging the elderly person's participation in social and cognitive activities, promoting continuous learning, and ensuring a safe and healthy environment.

Active participation in community groups, recreational activities, and health education programs is an example of how caregivers can facilitate active aging. Social interaction and emotional support are key to the well-being of older people living with AD.⁶ It is therefore necessary to prioritize non-pharmacological activities, including memory games, crosswords, puzzles, reading books, music therapy, stimulating memories through dialogues and photographs, physical exercise, manual activities, and others.⁷

In short, promoting active aging for older people with AD requires a multidisciplinary approach involving family caregivers, health professionals, and public policies.

This study aims to analyze the practices developed by family caregivers to promote active aging for elderly people living with AD.

Method

This is a descriptive, exploratory field study with a qualitative approach. Given that qualitative research considers the deeper levels of social relations, operationalizing them through subjective aspects,⁸this study seeks to understand the phenomenon - the practices of promoting active aging that family caregivers develop for elderly people living with Alzheimer's dementia - since the phenomenon in question is linked to the subjectivity and life experience of the caregivers who provide this care.

The research was carried out in the catchment areas of twelve Family Health Strategy (FHS) units in the municipality of Rondonópolis, the third-largest city in the state, located in the southeast of Mato Grosso, 210 km from the capital Cuiabá, and occupying a territorial area of 4,824.020 km². An estimated 244,911 inhabitants live in the municipality.⁹

The municipality of Rondonópolis has 65 health units in operation, 62 in the urban area and three in the rural area. Of this total, there are 58 FHS teams,¹⁰ organized and distributed by the district.

The districts and FHS teams were drawn using the AppSorteos^® application and proceeded as follows: using the app, the seven districts were listed as they are divided by the supervisors in charge. After the district had been drawn, the FHS teams that constituted the district were assigned to carry out a new draw. Once the district and the first team had been identified, the researchers went to the unit to contact the nurse in charge and obtain, through her, access to the caregiver indicated, according to the pre-established inclusion criteria. If the FHS team didn't have this caregiver, they would draw lots for the next team. This sequence was carried out until all the FHSs in the drawn district had been reached. If redundancy was not reached, a new district and its respective FHS teams were drawn, and so on.

The following districts and FHS teams were chosen for data collection: district 5, six teams; district 2, four teams; and district 4, two teams, making up 12 units.

The participants were family caregivers primarily responsible for elderly people living with AD, distributed in the area covered by the 58 FHS units in the municipality of Rondonópolis-MT. The study included 12 family caregivers who met the following inclusion criteria: aged over 18, who had been caring for the elderly person for at least six months, who were primarily responsible for the care, and who provided informal care (without payment). After three attempts by the researchers to contact them, those unsuccessful in scheduling and recording the interview were excluded.

The participants were chosen for convenience, based on the indication of professional nurses working in the FHS teams. The number of caregivers was determined using the data saturation technique, in other words, until redundancy was reached in the interviews.

Data was collected from June to August 2023 through a semi-structured interview at home to better understand the care experiences and practices to promote active aging developed by family caregivers for elderly people living with AD, based on the following triggering questions: Discuss the care routine you create with the elderly person with AD. In this routine, what activities do you offer the elderly person related to their physical well-being and social life?

The interviews, recorded on a smartphone and later transcribed in full, took place at a time scheduled and defined by the family caregiver. A community health worker accompanied the researchers to the caregiver's or elderly person's home to ensure the families' safety when participating in the study.

To ensure the confidentiality of the information and the anonymity of the participating caregivers, the interviews were identified by the capital letter "C" (representing the initial letter of caregiver) followed by an ordinal number in ascending order from one to 12 (C1, C2, C3… C12).

Bardin's content analysis technique⁸ was used for data organization and analysis, according to the following steps: organization of the study, coding, categorization, treatment of results, inference, and interpretation of results.⁸

Based on a thorough reading of the interviews, the findings were identified and coded by units of meaning. Three thematic axes emerged from the analysis: 1. Active Aging: promotion of health and safety practices based on the care routine developed by the family caregiver; 2. Health and safety practices as a means of promoting active aging for functional independence; 3. Social participation and lifelong learning as practice for promoting active aging.

The research, conducted by the ethical and legal precepts outlined in Resolution 466 of December 12, 2012, of the National Health Council (CNS),¹¹ originated from a proposal by the To Live – Active and Healthy Aging Program of the National Secretariat for the Promotion and Defense of the Rights of Older Persons (SNDPI) - Ministry of Women, Family, and Human Rights (MMFDH), and is part of the matrix research entitled “TO LIVE: Active and Healthy Aging,” closely related to the health axis, approved by the Research Ethics Committee of the Federal University of Rondonópolis, under CAAE 36636220.5.0000.8088.

Results

Twelve family caregivers of elderly people living with AD aged 18 years or older, of both sexes, participated in the study. There were more female caregivers (83.3%). Regarding the degree of kinship, 5 (41.7%) were spouses, 4 (33.3%) were children, and 3 (25%) were daughters-in-law. Regarding age, 8 (66.7%) were 59 or younger, and 4 were over 60.

As for marital status, 7 caregivers (58.3%) were married, 2 (16.8%) were in a stable union, 1 (8.3%) was single, 1 (8.3%) was widowed, and 1 (8.3%) was legally separated. In terms of education level, 7 (58.3%) had incomplete elementary school education; 3 (25%) had incomplete high school education; 1 (8.3%) had completed high school education; and 1 (8.3%) had completed higher education. All respondents reported not engaging in paid activities or receiving any benefits from the government or other institutions.

Active Aging: promoting health and safety practices based on the care routine developed by family caregivers

In the daily care of elderly people with chronic Alzheimer's disease, caregivers perform self-care actions as practices that promote active aging based on basic human needs supported by the pillar of health. This includes help with combing and washing hair, changing diapers, and assistance with bathing and dressing during periods when the elderly person shows signs of memory loss. In addition, family caregivers promote sunbathing in the mornings, providing well-being related to self-image, such as hair removal, nail, hair, and eyebrow care.

She is more forgetful sometimes, so she doesn't do anything alone. When she is like that, I help her wash her hair [...], bathe her, help with her hygiene [...], so it's care like cutting and painting their nails, taking them to the beautician to have their eyebrows and armpits done [...]. (C1)

Early in the morning, she wakes up, takes a shower, brushes her teeth [...], and goes out in her wheelchair [...] to get some sun. (C5)

He has his hairdresser [...] who comes here, cuts his hair, shaves him [...]. (C11)

The care routine developed by family caregivers related to health promotion for active aging also refers to assistance and care that considers the functional performance capacity of the person being cared for. Such actions include administering, organizing, and scheduling medications, preparing, handling, and serving meals, and maintaining fluid intake.

So early in the morning, I wake up, we give her medication [...] for her blood pressure, Alzheimer's, and a sedative. She has a cup of coffee, then goes back to sleep [...] She wakes up, has lunch, takes her diabetes medication and calcium [...] She doesn't know what medication she's taking, she must be given everything by hand [...]. (C1)

First thing in the morning when she gets up, she takes her medication for diabetes and high blood pressure [...] around nine o'clock, she eats some fruit, something. Then at eleven o'clock it's lunch, and soon after that she retakes her diabetes medication [...] She has dinner around 7 o'clock. (C4)

We organize her medication [...], buy it, and leave everything marked for her to take. (C5)

I'm always checking to see if he wants anything [...] water, I ask him directly. Do you want some water? Yes! Then I give it to him directly in his mouth. (C11)

It is also worth noting that the care routine developed by family caregivers, supported by the pillars of health and safety as a practice that promotes active aging, involves performing instrumental activities of daily living (IADL) through household chores such as cleaning and organizing the home environment, sanitizing and disinfecting personal belongings and private spaces, in addition to caring for personal clothing and bedding, considering that the clinical signs of AD include loss of sphincter control and a decline in the ability to perform more complex tasks, such as handling money, using a cell phone, shopping, and using transportation.

I do everything. From the moment she wakes up until she goes to bed. I wash her, cook, and bathe her. Oh, I clean the house and do the laundry. I do everything [...] I sit her on the toilet to urinate because she always wears diapers [...] I make her pee and poop in the toilet. (C4)

She can't control her bowel movements anymore. She's already soiled the bed; there's no time to get to the bathroom [...] sometimes I leave, and she soils the house, and then I must clean everything [...] this happens two or three times a week [...] then I take care of the clothes, the room, the bed. (C1)

She has a small cell phone and a phone book full of contacts. When she wants to call her son, I take the phone and call him so they can talk [...] when I need to go out, I call a taxi or my daughter [...] we have breakfast and leave early, collect our pensions, and do our shopping. (C2)

Health and safety practices as a means of promoting active aging for functional independence

Among the activities promoting active aging focused on the pillars of health and safety, family caregivers encourage functional independence for performing activities of daily living (ADL), such as basic self-care tasks that include bathing, dressing, brushing teeth, eating, walking, and transferring from bed to wheelchair.

When she is conscious, I let her shower by herself [...] I constantly try to encourage her to shower by herself, you know? (C1)

She sometimes forgets that she is eating, she stares at her plate [...] I have to remind her, I say to her: Pick up the spoon, you must eat!!! Then she remembers: ah... the spoon, and then she ate her food [...] I constantly try to encourage her to take a few steps when I transfer her from the bed to the wheelchair or from the chair to the toilet [...] Nowadays, we don't need to pick her up, she gets up and sits down by herself, I hold her and help her move around. (C4)

When it's around 10 o'clock, she wakes up, takes her medication by herself, takes a shower, brushes her teeth [...]. We are always trying to encourage her independence in self-care. (C5)

My siblings and I always prioritize her independence in showering and getting dressed, because her memory is not yet completely gone. (C10)

Considering the IADL, depending on the stage of AD the elderly person is in, as well as safety precautions and health risks or hazards, family caregivers can encourage them to perform household tasks such as maintaining the outdoor area (sweeping the yard), cleaning the home, washing clothes and household utensils, which are complex and necessary tasks, to promote independent and autonomous living in their own home.

When she feels well, she takes the broom, sweeps the yard, makes the bed, cleans the house, and washes all the dirty clothes. (C2)

We let her do household chores like washing dishes, sweeping the yard, and cleaning the house. Eventually, she wants to do laundry, but we don't let her because she doesn't know how to use the washing machine [...] We also don't let her use the stove because it's dangerous; sometimes she forgets to turn it off. (C10)

Practices to promote active aging developed by the family caregiver of the elderly person with AD are also related to encouraging healthy lifestyle habits through physical activities at the popular gym available in the neighborhood and walking.

In the late afternoon, my mother-in-law (an elderly person with AD) and my mother go for a walk [...] around four o'clock [...] they walk around the neighborhood. (C1)

Then there are times when she says, “Let's go out for a bit?” [...] So we go out in the late afternoon, pass by those exercise machines in the square, exercise a little, and then go home. (C2)

Social participation and lifelong learning as a practice for promoting active aging

Family caregivers' practices for the active aging of older adults living with AD are based on promoting social participation and lifelong learning, expressed through strengthening emotional bonds, intergenerational coexistence, and family gatherings, especially on weekends.

[...] Her grandchildren love her [...]. She plays a lot with the children and plays ball with the boys [...]. They like to watch television with her. (C1)

I stay with her all week, and on weekends she stays with her other children [...] we take her on Friday night and pick her up on Sunday night [...] Saturday and Sunday are reserved for her to interact with her children. (C4)

Her grandchildren always come to have breakfast with her on Saturdays [...]. (C5)

Our family gets together every weekend [...] We have lunch together, play games indoors, and be the family! (C7)

We always do something with our granddaughters and sons-in-law on weekends. (C9)

Among the practices promoted by caregivers to encourage active aging among older adults with AD, the following stand out social participation through family and neighborhood support, religiosity and moments of spirituality through participation in worship services, masses, religious campaigns, festive events at church, prayers at home, visits from the church community, and participation in religious programs through communication channels (television).

She likes going to church on Thursdays and Sundays [...] when there are campaigns, lunch, and parties at the church, she goes too. (C1)

We sometimes go to Mass on Sundays here in the neighborhood [...]. We go at night, and she participates in Mass and says her prayers [...] before going to bed. When we wake up, we pray together and thank God. (C4)

People from the church come to see her [...], bringing communion and rosaries for her too [...]. The church community is always here visiting [...]. (C5)

She spends the day watching television [...] when one mass ends, she turns on another [...] My neighbor also attends church and invites my mother to go [...] when there is mass here in the neighborhood, my daughter takes her. (C6)

When we can, we go to church [...] every 15 days, and the religious community comes to our house to worship. (C7)

She likes evangelical hymns. (C10)

He is Catholic [...] once a month, the priest comes here [...] he always asks us to pray the rosary, we do everything he asks! [...] It's so beautiful when we pray the rosary because the next day, he sits in his wheelchair, remembering and making the cross sign. (C11)

Promotional activities for active aging are also related to the availability of entertainment activities through information and communication technologies (ICT), such as: TV and radio, regular viewing of local news programs, religious programs, sports (soccer) and movies, promoting intergenerational inclusion and social participation among older adults living with AD and their families, as well as access to information and reduced social isolation.

Around lunchtime, she likes to watch the news; in the evening, she likes to watch it around six o'clock. (C1)

He has always liked television [...] he likes watching football games and movies [...] he watches the same movie I don't know how many times, but he likes it. (C3)

She watches with us when we're in front of the television [...] or the baby is watching a shark or a DJ cartoon, then she stays there too and interacts with him. (C4)

He watches television! He tells us to turn it on! But he watches all day, sleeps, wakes up, and watches again [...] he likes the radio, we leave it on during the day and at night to listen to all the programs and be entertained by the radio. (C8)

Practices promoting active ageing for older people with AD include lifelong learning through activities that help stimulate cognition and interactivity and improve quality of life. In this way, family caregivers adopt social practices that help elderly people stay active and alive according to their affinity, including experiencing music, especially the country rhythm, sewing, caring for plants, doing plastic activities, (re)memories with photographs, and using games.

Music, he always liked it and still does [...] we have a stereo here at home [...] so when he's awake, he turns it on (laughs). (C9)

The girls play country music [...] He used to play it, right? We heard him play [...] and encouraged him by putting the guitar on his lap. (C12)

She likes to sew, you know? [...] She likes to make rugs on the sewing machine [...] She made all the rugs in the house. (C4)

She gets up early and instead of sitting down to have breakfast, she goes straight to her plants [...] She even uses water, and then she comes to have breakfast (laughs). (C6)

She draws in the morning [...]. We bought her a book to paint, which helps keep her mind occupied. (C5)

We have a habit of showing her the photo album [...]. You can say the name of any of her children, but she doesn't know who they are, so it's strange to her! But I like to show her. (C12)

We have a little domino set here [...] sometimes she likes to play, so we get it out and play outside. (C2)

Family caregivers promote leisure activities for older adults living with AD, including occasional outings to parks, family homes, shopping malls, markets, commercial areas, trips, and fishing. The aim is to promote social participation to promote active aging and contribute to strengthening emotional bonds and physical and mental well-being.

Occasionally, we go on outdoor trips. My husband and I constantly try to take her and the children out on weekends. We go to the botanical gardens, markets, and city parks for a walk. Once or twice a month, we go to the mall so she can have a social life, which she enjoys. (C1)

We try to promote different environments and activities [...] we put her carefully in the car and take her everywhere in her wheelchair [...] We take her to the park, the market, the pharmacy, and visit my sister. (C4)

We take him fishing at the ranch, which he likes [...] Every year, we plan a trip to Curitiba to visit my daughter. (C9)

Furthermore, family caregivers encourage the financial independence of older adults living with AD to promote active aging for social participation by providing informal services, such as collecting recyclable materials during physical activities. This action aims to supplement the family's financial income, thus providing older adults living with AD with the experience of active, autonomous aging and a sense of belonging and satisfaction in contributing to family expenses.

During walks on the streets, my mother-in-law (an elderly person with AD) and my mother also enjoy collecting cans. We let them, it's a way for them to pass the time and keep their minds occupied [...] my husband goes and sells them [...] it's something extra they do, which helps contribute to the expenses and buy something for themselves. (C1)

Discussion

The care routine developed by family caregivers for elderly people with chronic AD in the home setting in this study consisted of tasks aimed at promoting health and safety as pillars for active aging. Hygiene and comfort were related to assistance in performing basic daily tasks, such as bathing, changing diapers, dressing, combing hair, and cutting nails. Usually, in AD, support for self-care begins during the second phase of the disease, in which cognitive decline progresses, denoting difficulty in mobility, requiring assistance, and the performance of self-care tasks for the elderly.¹²

The need for support for self-care activities, depending on the clinical signs that the elderly person presents in the different stages of AD, should initially consider that the disease compromises memory. In the intermediate stage, it presents already pronounced symptoms, such as difficulty performing routine activities related to cognitive decline and functional incapacity. Consequently, as the disease progresses, the elderly person's dependence increases progressively until they become dependent on care.¹³

Given the demands and tasks involved in the routine care of elderly people with AD, family caregivers must value comfort, self-care, and self-esteem, promoting the well-being of the elderly person. Care requires a lot of involvement and emotional responsibility, demanding attention, occupation, and concern.¹⁴

Family caregivers are intensely involved in self-care activities, as older adults can no longer perform these due to the progressive and degenerative nature of AD, associated with accelerated cognitive and memory loss. Thus, they take on basic and daily tasks. In addition, they are concerned with activities aimed at the well-being of the person being cared for.

Understanding the process involved in the routine care of elderly people with AD, this study presents data on the practices for promoting active aging developed by family caregivers, corroborating another recent study.¹⁵They point to developing strategies related to maintaining medication and contributing to the delay of disease progression.

In addition, maintaining nutrition and hydration is essential to prevent the onset of diseases and malnutrition and provide adequate nutrient intake, preventing the onset of complications. Care focused on nutritional health, such as defining mealtimes, quantity, consistency, and frequent provision of fluids, is essential to maintaining good hydration, nutrition, and quality of life for older adults living with AD. This must be strictly followed and provided by family caregivers.¹⁶

Family caregivers have taken on an essential role in the daily health care routine of older adults living with AD, often exceeding their knowledge base, particularly concerning medication management and monitoring the effectiveness of these drugs. In this sense, nursing professionals, through health education practices and guidance on drug interactions, appointments, and other care related to the use of polypharmacy, can be essential in providing directive strategies to enhance the care provided by caregivers.

The progression of DA leads to the loss of cognitive and motor skills, progressive decline in functional capacity, and gradual loss of autonomy, contributing to a decrease in independence in performing IADL. Consequently, it impairs the quality of life of older adults and requires comprehensive supervision by caregivers.¹⁷

From this perspective, family caregivers' support is essential in older adults' lives, especially for those who need care to perform daily activities related to health and safety, such as domestic services, house cleaning, washing clothes, bedding, and personal belongings.¹⁸

Regarding health and safety promotion practices for active aging, considering the limitations and consequences of progressive cognitive loss and functional decline, family caregivers seek to adopt strategies that help maintain and preserve functional independence and autonomy for basic and instrumental daily living.¹⁹

Interventions promoted by family caregivers are essential for reducing functional dependence for ADL and IADL and contribute to older adults developing their self-care skills with autonomy and independence, improving cognitive aspects, and overcoming limitations.²⁰

As in the results of this study, another study highlighted the importance of physical activity for older adults with chronic AD in improving cognition and memory and strengthening functional capacity, perception, and motor coordination. Thus, regular physical activity is considered a non-pharmacological treatment that is easily accessible and positively impacts the progression of the disease. This is an important ally for promoting health as a practice of active aging and quality of life for older adults with AD.²¹

Although in this study, family caregivers who were primarily responsible for caring for elderly people with chronic AD did not report significant formal support for promoting active aging in their interviews. It was noted that they have effectively sought to provide their family members with various activities. These activities encourage quality of life. This includes improving physical fitness, social life, and maintaining functional capacity for ADL and IADL.

In this sense, the undeniable importance of formal social support through health and social services is emphasized, implementing the guidelines described in the legal provisions for protecting the elderly population in Brazil. Nursing has a special role in promoting the functional independence of older adults through functional capacity assessment tools, supporting care practices, especially in primary health care. Functional assessment is a care action that promotes healthy and active aging and predicts the identification of older adults in conditions of physical and social vulnerability.

Considering the profound changes in daily life and dynamics caused by AD, informal social support from the family was strongly expressed in this study through social participation and lifelong learning as a practice to promote active aging in older adults. In this sense, creating bonds and connections between older adults and their families is critical for quality of life and strengthening relationships in the family context. This contributes to overcoming the difficulties and barriers that arise during the progression of the disease, as well as to family structural organization and the provision of adequate care.²²

In this study, family caregivers primarily caring for older adults living with AD presented themselves as protagonists in promoting social participation practices for active aging. Family support has stood out as a pillar of support for the daily and psycho-emotional needs of the elderly population. It also contributes to creating intergenerational bonds, promoting the well-being and inclusion of elderly people with AD in family dynamics.

Religiousness in the context of coping with chronic disease is considered to be a way of strengthening relationships between caregivers, older adults, and the community. In this regard, family caregivers have adopted religious/spiritual coping methods in the daily care routine of elderly people living with AD through devotion, attending religious programs, and attending church services. These activities foster the practice and renewal of faith. Such strategies promote coping with the disease and improve emotional and spiritual well-being.²³

Furthermore, this study indicates that the support of the religious community plays a central role in maintaining the psychological, spiritual, emotional, and social well-being of the elderly. It promotes improved quality of life, autonomy, and spiritual strengthening, especially for coping with progressive and irreversible health conditions such as AD.

Another way found by family caregivers to promote active aging among older adults living with AD was to incorporate ICT into their daily lives. Implementing ICT, such as digital TV, radio, soap operas, and news programs, is the main alternative family caregivers adopt to connect to the outside world, limiting feelings of social exclusion. The introduction of telecommunications devices and broadcast programming contributes to the development of audiovisual skills, communication, attention, and memory, bringing older adults with AD closer to social contact.²⁴

Another highlight of this study was social practices that promote the cognitive status and interactivity of older adults living with AD under their entertainment preferences. The benefits of social participation in promoting active aging and the effects of using music as complementary therapy in treating elderly people with AD are noteworthy. They aim at cognitive stimulation, awakening feelings and emotions, stimulating social interaction, and reducing symptoms of depression and anxiety.²⁵

The quality of life and aging process of older adults with AD are linked to factors such as physical, mental, and social well-being and leisure. Meanwhile, as evidenced in this study, leisure activities are a strong ally in coping with the progression of AD and improving health, behavioral, and social inclusion conditions.²⁶

It was also observed that family caregivers develop social and leisure activities that actively integrate older adults with AD into society autonomously and independently. This strategy positively influences the quality of life and social inclusion of elderly people with AD, thus stimulating cognition, memory recovery, socio-affective interactions, improved mood and anxiety, and the maintenance of social bonds.²⁷

In addition to this evidence, and from the perspective of promoting autonomy among older adults with AD, this study highlighted the collection of recyclable materials as an innovative practice for encouraging financial independence, with the possibility of supplementing income.

It is important to emphasize that caregivers have developed social entertainment and leisure practices to promote the autonomy of older adults in their life context through daily activities and using the resources available to them based on their social and financial possibilities, highlighting only the informal support of other family members, neighbors, or the religious community, without any evidence of support from society or the State, distancing themselves from the implementation of current public policies.

Given the above, it can be inferred that, considering the current aging process in Brazil and about the 1988 Federal Constitution, which guarantees the exercise of social and individual rights by the democratic state, including those of the elderly, there is still a gap in the implementation of guarantees of participation in social activities and the promotion of autonomy through society and the state, leaving families strictly responsible for social practices that promote the development of their potential for healthy and active aging.

Nursing is responsible for raising awareness of the quality of care provided to older adults living with AD and their families through individualized, user-centered care based on the implementation of assistance actions in the Primary Health Care setting. The implementation of policy proposals in care practice can be evidenced through nursing consultations and educational health guidance aimed at empowering this population with their rights.

The limitation of the study refers to the impossibility of generalizing the data, given the qualitative method.

Conclusion

When analyzing the practices of promoting active aging developed by family caregivers of older adults living with AD, the relationship between the four pillars of active aging policy became evident: health, safety, lifelong learning, and participation, providing integrated practices aimed at the well-being of the older population.

Health promotion was the central axis of active aging, with care practices developed by family caregivers based on promoting physical, mental, and social well-being and the autonomy and functional independence of older adults living with AD. Safety refers to environments that protect older adults against economic, physical, and social risks, emphasizing social protection systems and access to public services. These are fundamentals to promoting active aging, emphasizing maintaining and supporting instrumental activities of daily living.

Lifelong learning, that is, continuous learning, was presented as a pillar for stimulating older adults' cognitive and social plasticity, considering the formal support of health professionals, especially nurses, in promoting active aging. This included indicating educational opportunities in health, learning new skills, self-confidence, and social integration. In addition, information and communication technologies are used with a view to digital inclusion and autonomy. Social participation, on the other hand, encompasses the integration of older adults living with AD into society, valuing their experience and active voice, and reducing social isolation.

The results of this study may assist other families and caregivers in caring for elderly people with AD, raising possibilities for active aging based on available resources. In addition, the study may contribute to improving care practices among nursing and health professionals, highlighting the need to develop social inclusion actions and programs for the elderly population living with AD. The emphasis is on the role of society and the State in providing practices that promote active aging.

Authors Contributions

Study design: Samara Cristina Guimarães de Azevedo, Maria Edielly da Silva Rodrigues, Luciane Almeida Casarin. Data collection: Samara Cristina Guimarães de Azevedo, Maria Edielly da Silva Rodrigues, Luciane Almeida Casarin. Data analysis and interpretation: Samara Cristina Guimarães de Azevedo, Maria Edielly da Silva Rodrigues, Luciane Almeida Casarin. Manuscript writing: Samara Cristina Guimarães de Azevedo, Maria Edielly da Silva Rodrigues, Luciane Almeida Casarin. Critical review of the manuscript: Samara Cristina Guimarães de Azevedo, Maria Edielly da Silva Rodrigues, Luciane Almeida Casarin. Approval of the final version of the text: Samara Cristina Guimarães de Azevedo, Maria Edielly da Silva Rodrigues, Luciane Almeida Casarin.

Conflict of interest

The authors declared no conflict of interest.

Funding

The authors declared that there was no funding.

References

World Health Organization. Global status report on the public health response to dementia [Internet]. Geneva: WHO; 2021. [cited 2023 Nov 18]. Available from: https://apps.who.int/iris/bitstream/handle/10665/344701/9789240033245-eng.pdf

Ministério da Saúde. Conhecer a demência, conhecer o Alzheimer: o poder do conhecimento – setembro, Mês Mundial do Alzheimer [Internet]. Brasília (DF): Ministério da Saúde; 2021 Set 21 [cited 2023 Apr 12]. Available from: https://bvsms.saude.gov.br/conhecer-a-demencia-conhecer-o-alzheimer-o-poder-do-conhecimento-setembro-mes-mundial-do-alzheimer/

Santos FS, Gonçalves RFP, Bonini JS. Dementia staging and the correlation with the functional performance of the elderly with Alzheimer's disease: a cross-sectional study. Acta Fisiátr [Internet]. 2022 [cited 2023 Mar 30];29(3):159-164. DOI: https://doi.org/10.11606/issn.2317-0190.v29i3a194033

Nascimento HG, Figueiredo AEB. Estratégia de saúde da família e idoso com demência: o cuidado pelos profissionais de saúde. Ciênc. Saúde Colet [Internet]. 2021 [cited 2024 Dec 10];26(1):119-128. DOI: https://doi.org/10.1590/1413-81232020261.40942020

World Health Organization. Envelhecimento ativo: uma política de saúde. Brasil [Internet]. Brasília: WHO; 2005 [cited 2023 Feb 28]. Available from: https://iris.paho.org/handle/10665.2/7685

Silva AR, Campos AR, da Cruz IGC, Araújo SS, Coelho KR, de Oliveira F. O cuidado do idoso com Alzheimer e a resiliência do cuidador J. nurs. health [Internet]. 2023 [cited 2024 Dec 10];13(1):e13122347. DOI: https://doi.org/10.15210/jonah.v13i1.22347

Costa BGL, Lima LR, Funghetto SS, Volpe CRG, Santos WS, Stival MM. Non-pharmacological methods for alzheimer 's treatment: na integrating review. Rev. Enferm Cent. -Oeste Min [Internet]. 2019 [cited 2023 Apr 10];9:e2786. DOI: https://doi.org/10.19175/recom.v9i0.2786

Bardin L. Análise de Conteúdo. 70 ed. São Paulo: Persona; 2016.

Instituto Brasileiro de Geografia e Estatística. Área territorial brasileira, cidade e Estado. Rio de Janeiro; [Internet]. 2022 [cited 2023 Feb 23]. Available from: https://www.ibge.gov.br/cidades-e-estados/mt.html

Secretaria Municipal De Saúde de Rondonópolis. Caracterização das equipes de Estratégia da Saúde da Família. Rondonópolis: SMS; 2023.

Ministério da Saúde. Conselho Nacional de Saúde Resolução Nº 466, DE 12 de Dezembro de 2012 [Internet]. Brasília (DF): Ministério da Saúde;2012 Dez 12 [cited 2023 Apr 23]. Available from: https://www.inca.gov.br/sites/ufu.sti.inca.local/files//media/document//resolucao-cns-466-12.pdf

Silva PVC, Silva CMP, Silveira EAA. Family and the care of older adults with Alzheimer disease: a scoping review. Esc. Anna Nery Rev. Enferm [Internet]. 2023 [cited 2023 Sep 08]; 27 (3);e20220313. DOI: https://doi.org/10.1590/2177-9465-EAN-2022-0313pt

Brêda BF, Galvão BHC, Lima ISO, Nobre JMB, Lins LMM, Lisboa LA, et al. Mal de alzheimer em idosos – os desafios de seus cuidadores. J. Health Rev [Internet]. 2021 [cited 2023 Sep 10];4(4):14389-96. DOI: https://doi.org/10.34119/bjhrv4n4-002

Mattos EBT, Oliveira JP, Novelli MMPC. As demandas de cuidado e autocuidado na perspectiva do cuidador familiar da pessoa idosa com demência. Rev. Bras. Geriatr. Gerontol [Internet]. 2021 [cited 2023 Sep 08];23(3):e200189. DOI: https://doi.org/10.1590/1981-22562020023.200189

Martins MVG, Guerra M J C. A complexidade do cuidado no idoso com doença de Alzheimer e a introdução dos cuidados paliativos - uma revisão narrativa. REASE [Internet]. 2023 [cited 2023 Sep 22];9(7):80-9. DOI: https://doi.org/10.51891/rease.v9i7.10574

Souza JLD, Ferreira DC, Pfaffenbach G, Neto MM, Souza EV, Suarez TOF, et al. Aspectos nutricionais e cuidados com a saúde do idoso na doença de Alzheimer: uma revisão narrativa. J. Health Rev [Internet]. 2023 [cited 2023 Sep 06];6(2):7865-84. DOI: https://doi.org/10.34119/bjhrv6n2-272

Viegas LM, Rodrigues FM. Trajectory of family caregiving to dependent elderly people. Acta Paul. Enferm Enferm. [Internet]. 2022 [cited 2023 Sep 06];35:eAPE01056. Available from: https://www.scielo.br/j/ape/a/HzBNndSbtmRHQ3HLsDt47Sd/abstract/?format=html&lang=en

Figueiredo MLF, Gutierrez DMD, Darder JJT, Silva RF, Carvalho ML. Formal caregivers of dependent elderly people in the home: challenges experienced. Ciênc. Saúde Colet. [Internet]. 2021 [cited 2023 Sep 13];26(1):37–46. DOI: https://doi.org/10.1590/1413-81232020261.32462020

Santos S, Bueno CFO, Pires JAW, Bonini JS. Funcionalidade nas atividades instrumentais de vida diária em idosos com doença de Alzheimer. DRIUFT [Internet]. 2021 [cited 2023 Oct 01];8(3):1-8. DOI: https://doi.org/10.20873/uftv8-9074

Rocha ARM, Souza ALM, Cardoso MM, Corrêa VAC, Omura KM. O uso da reabilitação cognitiva e do treino cognitivo pela Terapia Ocupacional em idosos com a Doença de Alzheimer: uma revisão integrativa. Ver. Fam. Ciclos Vida Saúde Contexto Soc [Internet]. 2023 [cited 2023 Sep 19];11(1):e6070-e6070. DOI: https://doi.org/10.18554/refacs.v11i1.6070

Neta LFSM, Oliveira MCA, Silva KS. Physical activity and elderly with Alzheimer’s disease: an integrative review. Res. Soc. Dev [Internet]. 2022 [cited 2023 Oct 05]; 11(16):e555111638773. DOI: https://doi.org/10.33448/rsd-v11i16.38773

Dadalto EV, Cavalcante FG. The place of family caregivers for older adults with Alzheimer’s disease: a literature review in Brazil and the United States. Ciênc. Saúde Colet. [Internet]. 2021 [cited 2023 Sep 01];26(1):147–57. DOI: https://doi.org/10.1590/1413-81232020261.38482020

Silva MCM, Almeida AM, Castro EAB. Elderly caring for the elderly: spirituality as tensions relief. Rev. Bras. Enferm [Internet]. 2018 [cited 2023 Sep 30];71(5):2461-68. DOI: https://doi.org/10.1590/0034-7167-2017-0370
Camacho ACLF, Thimoteo RS, Souza VMF, Silva RP, Silva MAP. The importance of interactivity for elderly with dementias through information technologies. Res. Soc. Dev [Internet]. 2020 [cited 2023 Oct 08];9(4):e134942975. DOI: https://doi.org/10.33448/rsd-v9i4.2975
Martins PM, Quadros LCT. A música como agente terapêutico no tratamento da doença de alzheimer. Rev. Psicol. Pesqui [Internet]. 2021 [cited 2023 Sept 19];15(1):1-22. DOI:https://doi.org/10.34019/1982-1247.2021.v15.29081
Gaideski F, Socha SR, Ramos AAT, Takeda SYM. Impacto da cognição, funcionalidade e força de indivíduos com doença de Alzheimer sobre a qualidade de vida do cuidador. Acta Fisiátr [Internet]. 2021 [cited 2023 Sep 27];28(1):22-9. DOI: https://doi.org/10.11606/issn.2317-0190.v28i1a176043
Góes BGM, Ferreira LF, Lima NC, Antunes SR, Feio DCA. Difficulties faced by caregivers of people with Alzheimer’s disease: a systematic literature review. Res. Soc. Dev [Internet]. 2022 [cited 2024 Sep 05];11(4):e7311423879-e7311423879. DOI: https://doi.org/33448/rsd-v11i4.23879

Corresponding Author

Name: Samara Cristina Guimarães de Azevedo

E-mail: samaracristinaazevedo24@gmail.com