Experiences and expectations of family caregivers of elderly people with alzheimer's disease

Thalysia Peron Gargiulo¹, Robertha Vitória da Silva Guiziline², Yohara Ribeiro da Silva³, Daniel Rodrigues Machado⁴, France Araújo Coelho⁵, Renata Evangelista Tavares Machado⁶

^1,2,3,5,6University Center Governador Ozanam Coelho. Ubá (MG), Brazil.

⁴Fundation President Antônio Carlos. Ubá (MG), Brazil.

Introduction

Aging is a natural process and can be considered a worldwide phenomenon, influenced by various factors, including the fall in infant mortality, the reduction in fertility and birth rates, the urbanization of cities, and changes in lifestyle habits. In addition, increased access to health services and advances in screening, diagnosis, and treatment techniques have contributed to longevity. This phenomenon is reflected in the shape of the Brazilian age pyramid, which is different from a few years ago.¹ 

The Brazilian Institute of Geography and Statistics (IBGE) estimated that 15.8% of the Brazilian population is aged 60 or over, with life expectancy of 72 and 79 years for men and women, respectively.² 

Increased longevity can contribute to the emergence of Chronic Non-Communicable Diseases (CNCDs), among which dementia is one of the most common, with a projected increase of 135 million people worldwide by 2050.³ It is recognized that among dementia conditions, the most prevalent is Alzheimer's Disease (AD), with approximately 47.5 million elderly people affected.³ 

AD affects memory and promotes neuropsychiatric changes that affect the behavior and executive functions of elderly people,⁴ which results in an increasing degree of dependence. They therefore need the support of a caregiver to carry out basic and instrumental activities of daily living.

The caregiver is often a relative of the elderly person with AD, who carries out actions related to feeding, administering medication, and hygiene, among others. Most of the time, this care is provided voluntarily, driven by feelings of retribution, love, obligation, or because the family doesn't have the financial means to pay a formal caregiver.⁴  

Family caregivers present the daily experiences and expectations that emerge from the process of caring for elderly people with AD. These perspectives deserve to be known and valued, as they can prompt reflection by health professionals, especially those who work in Primary Health Care (PHC), to plan actions in line with the real needs of the population.

This study aims to find out how family caregivers perceive the experience of caring for elderly people with AD.  

Method

This is qualitative research using the theoretical and methodological approach of Alfred Schütz's sociological phenomenology.⁵ This approach is based on understanding the meaning of human actions in the social context and considers them to be conscious and intentional conduct, based on interpersonal relationships.⁶ The constructs used were: “reasons why” and “reasons for” human action. The “reasons why” correspond to past and present experiences, and the “reasons for” represent people's expectations. These “motives” allow us to understand the actions of the participants, the family caregivers, in the everyday world.

The study was conducted following the guidelines recommended by the Consolidated Criteria for Reporting Qualitative Research (COREQ),^7, and a non-probabilistic intentional sample was obtained, which included family caregivers responsible for the comprehensive care of the elderly person with AD, in the home context. Family caregivers who had been providing care for less than three months were excluded.

The study was carried out in the city of Ubá, located in the Zona da Mata, in the state of Minas Gerais, which has 116,797 inhabitants, of which 11,063 (10.89%) correspond to the elderly population aged over 60. The municipality of Ubá has 27 Basic Health Units (UBS), which operate according to the Family Health Strategy (FHS) model.

To collect the testimonies, the network sampling strategy (snowball) was used. This technique consists of the indication of new participants by the individuals selected to be studied.8 In this way, the nursing student researchers (Scientific Initiation scholarship holders) contacted, by telephone, some family caregivers of elderly people with AD who were part of their personal networks. At this point, the researchers explained the aim of the study, invited the caregivers to participate voluntarily, and scheduled the date and time for the interview.

The interviews took place in May 2023, at the participant's home. The ethical aspects involved were explained and the Free and Informed Consent Term (FICT) was signed. The interviewees were asked for their permission to use an audio recorder so that their statements could be recorded in full and analyzed later. The data collection environment provided privacy, was quiet, and was free of interruptions. The average interview time was approximately 30 minutes.

To help conduct the interview, a semi-structured script was drawn up with the following questions: How do you care for your elderly relative with AD? What do you expect while caring for your elderly relative? In addition to these questions, the participants' personal and socio-economic data were added to the data collection script.

Fifteen interviews were carried out and all the testimonies obtained were included in the study. It should be noted that there were no refusals or withdrawals from taking part in the study. The number of participants was not established a priori. Data collection ended when the significant content of the statements had been obtained and when no new themes emerged, indicating that the aim of the investigation had been achieved and the questions that guided the research had been answered.

To ensure anonymity, the statements were identified by the letter “F” (family member), followed by Arabic numerals corresponding to the order of the interviews. Each interview was then transcribed. Next, the interviews were read and re-read in detail, to distance themselves from the theory to highlight the meanings explained by the interviewees. This was followed by a comprehensive analysis and organization of the testimonies, the content of which was grouped by similarity of meaning to build thematic categories.

The past and present experiences of family caregivers of elderly people with AD resulted in the construction of categories referring to the “reasons why”, while the expectations tangible to this care of the elderly family member converged to form the category expressing the “reasons for”.

Finally, the organization and analysis of the results were based on the social phenomenology of Alfred Schütz.^5-6

The study was approved by the Research Ethics Committee (REC) of the Centro Universitário Governador Ozanam Coelho, under opinion no. 5.782.817.

Results

The group studied was characterized by female caregivers, married, retired, with a family income corresponding to 3.5 minimum wage and ranging in age from 55 to 84. It was also identified that most of them were daughters of elderly persons with AD and had been responsible for their care for more than 10 years. High school was the most common level of education.

Care activities for elderly people with AD (reasons why)

The experiences reported by family members about the care they provide to elderly people with AD allowed them to identify the following daily activities: preparing and offering food according to the elderly person's needs, hygiene, transfers, dressings, skin moisturizing care, massages, welcoming emotions, among others:

I make and give the food, following the nutritionist's recommendations to replenish mineral salts, etc. [...] It's not very solid, I use a blender [...] I bathe her, change her diapers, and give her massages to remove her stools, which are not spontaneous [...] in the bath, I transfer her to the bath chair and take her to the shower [...] I bandage her, look at her body, moisturize her skin with oil [...] I massage her legs [...] (F11)

[...] now she's fed by tube [...] I bathe her in bed; I clean her mouth. [...] when she's in crisis, I try to calm her down by holding her hand and talking quietly, but sometimes it doesn't work [...]. The more you talk, the more she screams, so it's better to let her extrapolate everything that's inside her [...] she has a lot of bedsores, so I change her position every two hours, day and night [...]. (F3)

Changes made to the home environment as a result of the care process (reasons why)

Family caregivers reported that they had made adaptations to the home environment, which varied according to the degree of functional dependence of the elderly person with AD. These adaptations ranged from the most basic to the most robust, incorporating structural environmental aspects:

We installed a handrail in the bathroom for him to hold onto, if necessary, but [he] hardly uses it. We've tried to make it better [...] in case he needs it [...] we've already put it in the bathroom.” (F6)

I had the shower stall fixed, it was too tight [...] I had it enlarged. I did this when he was still walking because I had already foreseen that he would need a shower chair. (F9)

He uses the hospital bed. [...] the doors were narrower [...] in the bedrooms, in the bathroom they were a bit wider. I had to remove the shower door, I had to make a bathroom in the room just for him [...] that's why there's this gate there. (F8)

We took the shower stall out of the bathroom because the shower chair wouldn't fit in it. Her bed is normal, but we put up a railing [...] this protective railing is always with a cushion, a pillow, so it doesn't hurt. [...] my sister bought this [pneumatic] mattress and it's been wonderful. (F12)

Perception of Primary Health Care support (reasons why)

Family caregivers indicated the PHC service as a health device that supports them in caring for the elderly person with AD:

The health center supports us in everything we need. The doctor comes to the house, makes his visits, once a month he comes to the house. (F1)

The staff who work at the health center are always here. They make the visits and do the vaccinations. They're always available when we need them. (F12)

On the other hand, some of the participants in the study revealed weaknesses in the longitudinality of care within the PHC, especially in the visit by the Community Health Agent (CHA) and the delay in scheduling a medical home visit:

The health agent visits us once a month, but nothing more than that [...] I asked the FHP for a home visit [...] it was scheduled for three weeks later, then a fortnight later [...] on the day, they called me and said they didn't have a car, so it was for another week [...]. (F2)

The health agent doesn't visit our house [...] she doesn't treat us well [...] they told me to complain [...] I said: never mind. (F13)

They expect cooperation from the family support network and their expectations of the elderly person with AD (reasons for)

Family caregivers said they expected to receive support from other family members. In addition, they feel overburdened by having to take care of the elderly person with AD on their own:

I'm at this stage, tired, and exhausted. I've been looking after her for five years, since 2018. So I even have psychological support. But it's very tiring, very tiring [...] because I'm the only one doing everything, cleaning the house, feeding her, everything [...] it's very tiring. [...] I don't receive any financial help or support from anyone, I'm on my own for everything. (F5)

So it's all on me. It's a heavy bar. I know that I'm going to have to resolve any situation, so I'm there 24 hours a day, waiting for the lightning to strike, more or less. It's not that we want to take care of her, you know? But we wanted more support. (F13)

They also mentioned the expectation that older people with AD will get better or stabilize:

I hope she gets better as soon as possible, I hope she gets better, but I know she won't get better. It's just that we [...] pray, ask God. She's improved a lot [...] everyone who talked to me about Alzheimer's said, you'll see in five years, six years, she won't do anything. It's been 13 years, now that she's started to decline. She started getting Alzheimer's when she was 68, she's now 81. (F10)

I hope that [...] improvement is very complicated for Alzheimer's, but that she stabilizes, that she gets well. We're very afraid of her falling, so I'm very afraid of her using a tube, I'm [...] I always say “Oh, no! Not using a tube” because he says that if she forgets to eat, she'll have to use it. So, I hope she'll be fine, just the way she is. (F14)

Discussion

The results of this study reveal the past and present experiences (reasons why) of family caregivers of elderly people with AD, characterized by carrying out care activities, adapting to the home environment, and receiving support from PHC.

The participants verbalized care activities that included: preparing and offering food according to the elderly person's needs, hygiene, transferring, dressing, moisturizing the skin, massages, and welcoming emotions, among others. These activities are necessary because, as the disease progresses, it is expected that there will be limitations that make the elderly person more dependent. To approach care, it is important to point out that AD is a dementia that unfolds in three distinct phases, presented briefly below: in the first phase, memory lapses and subtle cognitive declines are observed. In the second phase, which involves the progression of dementia, there is a more pronounced loss of memory and an inability to carry out complex tasks such as calculations and planning. In the third stage, there is a marked impairment of functional capacity and difficulties in carrying out basic activities such as eating, dressing, and personal hygiene.⁹ 

Thus, the family caregivers who took part in this research pointed to the activity of caring for, preparing, and offering food to the elderly person with AD. Family caregivers' concern about food can be seen regardless of the stage of AD.

From this perspective, a study carried out in Rio de Janeiro also showed that family caregivers were concerned about the nutritional status of elderly people with AD. They were concerned about: good nutritional status, so the caregivers provided stipulated meal times; hydration; quality, consistency, and attention to observing food swallowing.¹⁰ 

Elderly people with AD may have difficulty swallowing, which requires special attention to the texture of food. Some family caregivers revealed that they used a blender to help prepare meals; others revealed that they offered the diet through an enteral tube.

Given the singularities related to feeding elderly people with AD, it is recognized that family members need support to provide specific and safe care. In this context, the importance of support from PHC nurses emerges, as they can make recommendations such as positioning and aligning the patient to prevent aspiration of liquid and solid foods, helping with swallowing assessment and management, emphasizing the importance of maintaining proper oral hygiene, as this practice prevents periodontal problems and complications with dental prostheses.¹¹ In addition, nurses are professionals trained to assess the needs of the elderly and make referrals to other professionals to contribute to comprehensive care.

Hygiene is also an activity undertaken by family caregivers. An international literature review study found that caregivers help the elderly bathe, comb their hair, cut their nails, perform oral hygiene, and remove dentures. Among these activities, bathing was singled out as the most difficult, because it invades privacy and it is difficult for the elderly person with AD to join in.⁴ 

Bathing elderly people with AD should be carried out according to their degree of functional dependence, with either a sprinkler bath or a bed bath. It should be noted that when bedridden, the elderly are more susceptible to pressure injuries, which can be facilitated by factors such as skin friction, immobility, trauma, and transfer. Therefore, to prevent the development of these injuries, it is crucial to make frequent decubitus changes, constantly moisturize the skin, and use special mattresses and pillows to relieve pressure.¹²

In addition to physical care, the participants take care of emotions. Elderly people with AD can show symptoms of aggression, irritability, and misinterpretation of visual and/or auditory stimuli; to help them, caregivers need to invest in strategies for non-verbal communication. The strategy of communicating affectionately can generate comfort and reduce symptoms of agitation and aggression.⁴ In short, to establish welcoming communication, the emphasis needs to be on “how you talk” and not “what you say”.

Concerning changes made to the home environment, family caregivers said that they had provided, among other things: the installation of grab bars; the widening of doorways to allow access with the use of wheelchairs or bath chairs; the use of a hospital bed; a bed rail and the use of an air mattress. These elements show that the safety of elderly people with AD was a concern. Similarly, a study carried out in Rio Grande do Sul also highlighted adaptations aimed at the safety of the elderly, with the bathroom being the focal point of the interventions.¹³ 

One difference mentioned by the interviewees in this study was the use of a hospital bed by some elderly people with AD. This adaptation can significantly contribute to the comfort and safety of the elderly, as well as facilitate the daily tasks of caregivers, which minimizes ergonomic risks.

Falls in elderly people with AD may be more frequent due to motor impairment such as gait disorders, extrapyramidal motor impairment, rigidity, and postural instability, as well as behavioral disorders such as wandering and aggressiveness.¹⁴ 

A longitudinal study carried out in Pakistan showed that environmental risks are the main cause of falls in elderly people with mild and moderate AD, while falls due to dizziness and instability are more common in the advanced stages of the disease. In addition, when comparing the incidence of falls in two groups of elderly people (with and without AD), it was found that falls were more significant in the group with AD and that fractures were more common than in the reference group.¹⁴ 

The approach to falls in elderly people with dementia can often be seen in hospital institutions that are advancing in the culture of patient safety, carried out through the recommendations of the World Health Organization (WHO). Therefore, these institutions may differ from the elderly person's home, as they tend to have few resources, limited equipment, and little training for family caregivers.¹⁵ 

In this sense, some Swedish nurses who provided home care said that before proposing adaptations to the homes of the elderly, it was necessary to establish relationships of trust between the patients and their relatives, observe the furniture, the carpets, the presence of pets, and whether the elderly used aids for walking, among other things. These nurses also took care of the elderly person's safety when, as well as proposing adaptations, they used instruments such as scales to prevent falls, pressure injuries, and infections.¹⁵ 

In the experiences reported by family caregivers, it was identified that PHC supports the care of elderly people with AD, through home visits for medical appointments and vaccinations. However, despite having access to medical visits, these caregivers felt that the scheduling process was slow, as well as weaknesses in the CHA's work.

PHC in Brazil is the level of care that is closest to the population through the FHS, which has multi-professional teams made up of at least: a nurse, a nursing technician, a doctor, and CHAs. In some cases, these teams include a dentist and an oral health assistant or technician.¹⁶

According to the National Primary Care Policy (NPCP), the doctor must carry out, among other activities, a clinical consultation, which can be at home, to facilitate access for people who have difficulty getting to the health unit. This is the case for most elderly people with AD. Home visits are also carried out by nurses for consultations and procedures, such as administering vaccinations.¹⁶

In South American countries, except for Uruguay, professionals similar to the Brazilian CHA are the official members of multi-professional PHC teams. Portugal, France, Spain, England, the United States, Canada, India, Kenya, Uganda, Ghana, and South Africa also have these professionals, who work in a defined territory and are responsible for several families, defined by the recommendations of each country. Their main working tool is the home visit.¹⁷ 

A study carried out with FHS team members in five regions of Brazil (Araranguá, Brasília, Fortaleza, Manaus, Porto Alegre, Belo Horizonte, Rio de Janeiro, and Teresina) found that CHAs identified the needs of dependent elderly people and facilitated their access to the health care network. At the same time, they supported the elderly's family caregivers in obtaining medication and in listening attentively to relieve suffering.¹⁷  

However, in the same study, PHC professionals acknowledged that there was a reduction in the number of CHAs per team and a compromise in the number of hours allocated to training and continuing education, which led to fragile professional performance and care coverage.¹⁷ These circumstances can interfere with the care of elderly people with AD.   

The family caregivers in this study expected to receive support from other family members. This lack of support contributes to the burden of caring for the elderly person with AD on their own.

It can be seen that caregiving is solitary and permeated by gender issues, since “being a woman” is imbued with the social role of caring, with no division of responsibilities between family members. This context, combined with self-neglect, influences the health-disease process, which can lead to chronic pain such as arthritis; hypertension; diabetes; sleep problems; loneliness; depression; loss of freedom, and financial difficulties.

It is known that family caregivers are often more vulnerable to mental health disorders. Disunity, even before diagnosis, creates an environment conducive to overburdening the caregiver, who often feels unprepared to face the constant changes and emotional challenges inherent in the condition of the elderly person. In this scenario, it is recommended to strengthen family ties and promote an environment of understanding and collaboration, share activities, and reduce the burden on the caregiver of the elderly person with AD.¹¹

It is essential for the caregiver to be aware of the changes in their own body and to observe mood swings, anxiety, significant physical and emotional exhaustion, as well as feelings such as guilt and insecurity about their role. Recognizing these symptoms is crucial, and they need to be worked through and shared with family members and other people experiencing similar situations. Observing and identifying these changes is essential to promote reflection and the development of strategies capable of modifying the reality experienced. In this way, more effective support can be provided, with a view to emotional and physical well-being, in parallel with facing the challenges of caring for the person with AD.¹⁸ 

A study carried out in Kigesi, Uganda, found that family caregivers receive emotional and social support from friends, Family, and religious leaders in the form of advice, encouragement, and companionship to cope with the negative feelings caused by the burden or clinical condition of the elderly person.¹⁹ 

The interviewees also mentioned the expectation that elderly people with AD will get better or stabilize. Similarly, a study carried out in Curitiba (PR) revealed that family caregivers, faced with the challenges of caring for elderly people with AD, nurtured a resilient hope for a different future. They showed an unwavering willingness to accept the circumstances and seek new paths in search of a better quality of life. Hope, in this context, emerges as a guide that leads family caregivers towards transcendence, acceptance, and coping with the obstacles that present themselves along the way.²⁰

It's worth pointing out that this optimistic expectation doesn't always exist, since there are studies that reveal that family caregivers of elderly people with AD can experience anticipatory grief. The results of a study conducted in Spain suggest that family members of people with AD go through this grieving process: they show surprise, anger, and fear; the majority (90%) recognized that their family member was at the end of their life; they all restructured their family to adapt to the new situation; 30% expected their family member's health to improve, while 70% facilitated the dying process.²¹ 

Although this study addresses important aspects of the experiences and expectations of family caregivers of elderly people with AD, it does have some limitations. As this is a qualitative study, the results presented are specific evidence of the group studied, which belongs to a particular reality that may differ from another, which prevents the results from being generalized. Therefore, the following other research possibilities can be considered and implemented.

Conclusion

This study provided insight into the experiences and expectations of caring from the perspective of family caregivers of elderly people with AD. Past and present experiences (reasons-why) stemmed from the caring process, i.e., physical care, such as bathing, preparing and offering food, and changing decubitus, among others. In addition to this physical care, caregivers take care of the emotions of the elderly person, who may be irritable or agitated.

With a focus on the elderly person's safety, these family members made changes to the home environment for the care process, by widening doors, installing grab rails, and buying a hospital bed and safety rails on the bed. In this way, these devices prevent falls, which tend to be more frequent in elderly people with AD. The experiences also included receiving support from PHC, through home medical appointments and vaccinations. However, family caregivers verbalized weaknesses in access to this type of medical care and in CHA home visits.

When projecting the expectations related to caring for elderly people with AD, family caregivers expect to receive support from other family members. This lack of support culminated in statements referring to care overload. However, despite the difficulties they face in terms of social support, they also show optimism, identified in their expectations of improvement and stabilization of the clinical condition of AD.

In short, there is a need to pay attention to family caregivers, who often take on comprehensive care and self-neglect in terms of health and well-being, to meet and live up to the demands of the elderly. Professional support emerges as a crucial anchor, providing not only expert guidance but also the emotional support essential to cope with the implications of the journey. To build a more comprehensive and compassionate approach, it is essential to promote awareness, strengthen family ties, and ensure effective resources to empower caregivers to overcome the challenges of AD with resilience and dignity.

It is recommended that nurses, who often play a leading role in PHC health teams, analyze and develop actions, together with the multi-professional team, aimed at providing comprehensive care to the public, which is sometimes recognized only as an informant on the health conditions of dependent elderly people. In addition, training is recommended to support the care of elderly people with AD.

Authors Contributions

Study Design: Thalysia Peron Gargiulo, Robertha Vitória da Silva Guiziline, Yohara Ribeiro da Silva, Daniel Rodrigues Machado, France Araújo Coelho, Renata Evangelista Tavares Machado. Data Collection: Thalysia Peron Gargiulo, Robertha Vitória da Silva Guiziline, Yohara Ribeiro da Silva, Daniel Rodrigues Machado, France Araújo Coelho, Renata Evangelista Tavares Machado. Data analysis and interpretation: Thalysia Peron Gargiulo, Robertha Vitória da Silva Guiziline, Yohara Ribeiro da Silva, Daniel Rodrigues Machado, France Araújo Coelho, Renata Evangelista Tavares Machado. Manuscript Writing: Thalysia Peron Gargiulo, Robertha Vitória da Silva Guiziline, Yohara Ribeiro da Silva, Daniel Rodrigues Machado, France Araújo Coelho, Renata Evangelista Tavares Machado. Critical review of the manuscript: Thalysia Peron Gargiulo, Robertha Vitória da Silva Guiziline, Yohara Ribeiro da Silva, Daniel Rodrigues Machado, France Araújo Coelho, Renata Evangelista Tavares Machado. Approval of the final version of the text: Thalysia Peron Gargiulo, Robertha Vitória da Silva Guiziline, Yohara Ribeiro da Silva, Daniel Rodrigues Machado, France Araújo Coelho, Renata Evangelista Tavares Machado.

 Conflict of interest

There are no conflicts of interests.

 Funding

This work was carried out with the support of the Governor Ozanam Coelho University Center (UNIFAGOC).

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