End-of-life perspectives according to family caregivers of older adults with dementia: A qualitative study

Abstract

Background

Family caregivers are primarily responsible for the care of older adults with dementia, and the demands of this care increase as the end of life approaches. Experiencing the end of a family member’s life can be stressful, and caregivers consider important to know how to identify when their loved one is approaching the end of life in order to prepare for this moment. Thus, as the family is primarily responsible for the older adult with dementia, it is essential to know the meanings of the end of life attributed by family caregivers.

Objective

To analyze the perceptions of family caregivers of older adults with dementia about the end of life.

Methods

This is a qualitative, descriptive and exploratory study. The convenience sample consisted of family caregivers of older adults with dementia. The inclusion criteria were being a family member directly involved in the care of the older adult with dementia and being 18 years of age or older. Data were collected from individual semi-structured interviews. The number of participants was defined during the interviews using the saturation criterion. Data were analyzed using the thematic analysis technique.

Results

A total of 63 family caregivers participated, 74.6% of whom were women, predominantly wives and daughters. Two themes resulted from the data analysis: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence. The meaning of the end of life was perceived in different ways by family caregivers. Understanding how they perceive and experience the end-of-life process of the older adult with dementia helps to clarify the best ways for the health professionals to approach and intervene with these families.

Keywords

family caregiver end-of-life care dementia older adult qualitative research

Introduction

The majority of care for older adults with dementia as they near end of life is provided by family caregivers (WHO, 2012). While there is no clear agreement as to when the end-of-life period begins in this condition, family members are universally asked to make increasingly difficult and complex decisions as the disease progresses (Browne et al., 2021; Jones et al., 2019). Therefore, family caregivers go through diverse and complex transitions over time, which encompass changes in occupational, environmental and relational roles, as well as physical, emotional and mental health (Kokorelias et al., 2021).

The experience of living the end of life of a family member with dementia can be distressing (Shanley et al., 2011). According to a systematic review study by Browne et al. (2021), family caregivers have difficulty understanding dementia as a possible cause of death for the older adult. There is consequently a need for caregivers to know more about the end-of-life process and to prepare for the death of this person (Shanley et al., 2011). Understanding when a person is reaching the end of their life is important so that the person and their family can prepare for this moment (Cohen-Mansfield et al., 2018).

In this sense, cultural differences can influence the perception of what would be considered a “good end of life”, and therefore knowing these cultural values can help to guide policies and care models aimed at improving care for people with dementia and their families (Nishimura et al., 2022). This study by Nishimura et al. (2022) pointed out that the relationship between caregiver and person with dementia was crucial for maintaining a good end of life in the eight cultures investigated: Brazil, Canada, Germany, Ireland, Japan, Portugal, the Netherlands and the United Kingdom. Furthermore, being in a familiar place chosen by the person with dementia, and in a comfortable place is important in all these cultures. However, people in Brazil, Portugal and Ireland prioritize being cared for at home, while families in Japan prefer that the older adult goes to the hospital to receive all possible treatments.

Regarding the use of opioids to control pain and other symptoms at the end of life, they are only used in exceptional cases in Brazil, Portugal and Japan, while in the Netherlands they are more frequent (Nishimura et al., 2022). However, it is worth noting that the access of low- and middle-income countries to opioids for use in patients who are in palliative care is a major barrier to implementing this intervention (Knaul et al., 2018).

With reference to the desires and preferences of the person with dementia in Brazil, they prioritize maintaining the relationship with the caregiver above their own choices. This happens to try to protect their caregivers from the burden of care and to stay in the family circle. On the other hand, the manifestations of spontaneous wills are respected in Japan, but asking the person with dementia to decide about their end of life is considered a way of putting pressure on and causing anxiety in the individual. Finally, Brazilians believe that their identity will be maintained with the progression of dementia, since care is provided at home by their family members, and therefore these people know their life story (Nishimura et al., 2022).

Cultural differences regarding a “good end of life” added to the lack of clarity at the level of public policies about when to implement interventions for end of life in dementia compromise programs which involve palliative care at this stage of life (Cohen-Mansfield et al., 2018; Nishimura et al., 2022). Therefore, these people end up receiving potentially costly and inadequate care (Browne et al., 2021; Cohen-Mansfield et al., 2018). All this can generate discomfort and low quality of life for these individuals, in addition to financial instability and emotional burden to the family (Cohen-Mansfield et al., 2018).

Considering that the family is primarily responsible for the care provided to the older adult during the course of dementia and that they need guidance and support to deal with the progression of the disease (Colussi et al., 2019), it is essential to know what the the meaning of end of life is for family caregivers. Understanding their perceptions can improve care, alleviate caregivers’ burden and suffering, and improve intervention strategies by healthcare professionals. Therefore, the aim of this study was to analyze the perceptions of family caregivers of older adults with dementia about the end of life.

Methods

Study design

The current study is part of a qualitative, descriptive and exploratory research on the perceptions and experiences of family caregivers of older adults with dementia on Advance Care Planning (ACP).

Participants

The convenience sample consisted of family members of older adults with dementia who live in the city of Belo Horizonte, of Minas Gerais state in Brazil. Inclusion criteria were: 1) being a non-professional carer who is a member of the immediate family and directly involved in caring for the older adult with dementia at the time of the interview, 2) being 18 years old or over, and 3) being able to speak Portuguese. Regarding dementia, the older adult supported by the interviewee could have the disease at any stage and have any type of primary dementia. Participants were recruited from outpatient clinics of a general public university hospital and in private clinics in Belo Horizonte using a snowball method, in which a participant may recommend others to volunteer to participate in the study (Naderifar et al., 2017). The name of each participant was changed to a numeric code to ensure anonymity. Written consent was obtained prior to commencement of interviews.

Data collection

An interview guide was developed based on review of the literature that included known issues relating to the knowledge and experiences of family caregivers regarding ACP. Data collection was completed using a series of demographic and semi-structured questions. This paper presents findings from the analysis of a central question regarding the end of life in the perception of the family caregiver and from other questions related to the care and the end of life in relation to their loved one with dementia (Table 1). Interviews were conducted individually by the authors 1, 2 or 3, in a location chosen by each participant, and were typically 1 hour duration. The number of participants was defined during the interviews using the saturation criterion (Martínez-Salgado, 2012).

Table 1.

Interview guide with central and related questions.

Central question

When I say “end of life”, what do you think about?

Data analysis

Data analysis was performed using the thematic analysis technique, as proposed by Braun and Clarke (2006). The process consists of six phases and begins when the researcher starts to notice and look for patterns of meaning, as well as issues of potential interest in the data, and ends with reporting the content and meaning of the themes in the collected data (Braun & Clarke, 2006). All interviews were audio-recorded and transcribed verbatim.

Reliability

Steps were followed in order to increase the reliability of this study (Rose & Johnson, 2020). Data collection was performed by three researchers (1^st, 2^nd and 3^rd authors), who already had previous experience in providing care to people with dementia and their families. They had no prior relationship with the participants. The interviewers met weekly with the researcher responsible for this study (5^th author) in order to analyze the content of the interviews. The interview transcripts were read line by line and coded independently by the researchers, who met regularly to discuss the themes and the best sentences that exemplify them. Any differences were resolved through discussion between the authors to reach consensus. Finally, the researchers followed the “checklist for verifying thematic analysis criteria” by Braun and Clarke (2006) with 15 items to ensure that a thorough analysis was completed.

Findings

A total of 63 family caregivers of older adults with dementia participated in this study. These caregivers were aged between 20 and 86 years, and 36.5% were above 65 years of age. Female, married and Catholic people predominated. Table 2 presents the demographic data in detail. Regarding the older adult with dementia, 61.9% were female and the mean age was 80 years. With reference to the types of dementia, 84.1% of older adults had Alzheimer’s disease, 7.9% mixed dementia, 4.8% vascular dementia, 1.6% dementia with Lewy body and 1.6% frontotemporal dementia.

Table 2.

Demographic characteristics of family caregivers of older adults with dementia (n = 63).

Participant’s characteristics	n (%)
Gender
Female	47 (74.6)
Male	16 (25.4)
Age group (years)
20–39	6 (9.5)
40–59	25 (39.7)
60–79	29 (46)
80 or older	3 (4.8)
Relationship status
Single	13 (20.6)
Married	41 (65.1)
Divorced or separated	4 (6.4)
Widowed	5 (7.9)
Years of formal education
Year 4	7 (11.1)
Year 8	5 (7.9)
Year 11	23 (36.6)
Year 12 beyond	28 (44.4)
Religion
Catholic	38 (60.3)
Protestant	11 (17.5)
Spiritist	6 (9.5)
Agnostic	6 (9.5)
Atheist	2 (3.2)
Relationship to the person with dementia
Spouse	20 (31.7)
Child	27 (42.7)
Grandchild	4 (6.4)
Sibling	4 (6.4)
Daughter-in-law	4 (6.4)
Nephew/niece	4 (6.4)
Socioeconomic classification ^a
A	14 (22.2)
B1	9 (14.2)
B2	19 (30.2)
C1	12 (19.1)
C2	4 (6.4)
D-E	5 (7.9)

^aWe used the socioeconomic classification according to “Critério Brasil” (Criterion Brazil) proposed by the Brazilian Association of Research Companies (ABEP, 2018). “Critério Brasil” divides the Brazilian population into six economic classes based on the questionnaire’s score, with class A being the highest with a score between 45 and 100, and class D-E the lowest with a score between 1 and 16. According to ABEP (2018), as income greatly varies between economic classes in Brazil, this data is not an efficient socioeconomic level estimator, therefore it does not replace “Critério Brasil” (ABEP, 2018).

The thematic analysis identified two themes regarding the perception of family caregivers of older adults with dementia about the end of life: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence.

Theme 1 – Different perspectives on the end of life: from death itself to a sad, painful and long grief process

One caregiver limited the end of life strictly to the event of death itself and explained:

“End of life? Death. It’s over. He died. Unfortunately. He died. He’s gone […]” (E54, 55 years, son).

This caregiver, although recognizing death as a matter of time, reflected on the ephemerality of life:

“Although we know that this [end-of-life] is a reality for all of us, it is only a matter of time: to die, you only need to be alive. […] I was going to say a word that I never said: ephemerality, because we are like a breath, everything passes very quickly. […] it [end-of-life] is a reality for all of us and none of us escapes it, at some point it will arrive” (E10, 53 years, daughter).

Despite that, another interviewee had difficulty finding words to define the end of life:

“It is hard to answer because we never think the end has come, you always think you have a lot ahead of you. I don’t have a word…” (E14, 70 years, husband).

Experiences with family members have guided the understanding of the end of life as a process, in which a person with dementia passes through stages that culminate in death:

“[…] my grandmother stayed in bed for about 05 years [with dementia]. […] Her body was shrunk and confined to bed, and prolonging someone’s life like that makes no sense, it’s not possible […] she had no suffering, but she had no life: [my grandmother] kept her mouth open, eyes closed, she didn’t do anything else. […] Therefore, I think that the end of life should have more quality, and without having to be dragged along” (E1, 57 years, daughter).

“Weakened, alone and death are the words, because unfortunately you are very lonely at the end of life. I saw my mother very alone [interviewee starts to cry]” (E23, 56 years, wife).

A caregiver reflects on the wish for death to be sudden:

“I know she won’t heal or get better, but I wouldn’t want to see her suffer [at the end of her life]. So the hope I have is that one day this will end. I would like it [death] to be very sudden, not like this uncle of hers who is wasting away, losing weight and needing a tube to feed… no, I wouldn’t want it to be like that, I would prefer it to be sudden” (E14, 70 years, husband).

Respondents qualify the end of life as a sad event, after a long and painful process for both the person with dementia and the family, accompanied by the grief of the caregiver.

“[The end of life] is one thing I think I didn’t want to have, the end. Everyone has it, but I think… the end of life is very sad […] No matter how hard time you think the person is giving you, but you don’t want to” (E32, 57 years, daughter-in-law).

“[…] when we stay in bed, we can’t make a decision, we can’t get up, we can’t say: ‘I don't want this or I want that…’. […] my fears are these: not being able to express what I’m feeling […] and people not respecting me. […] I’m afraid of being naked and people not covering me and I can’t cover myself… I think it’s very sad…” (E56, 71 years, wife).

“[At the end of life] there is a need for care, love, to be together with the person… because the person is leaving… it’s the end… […] I think like this: the end of life is a time that can be very good, but it can also be very bad for a person if he/she is there alone, abandoned, without anyone. When a person is my mother-in-law’s age and most people are not going to visit or they don’t make a phone call: […] I find it very sad” (E43, 59 years, daughter-in-law).

“[in dementia] you see the person disappearing, it is a kind of grief” (E20, 46 years, daughter).

On the other hand, a son who takes care of his father understood the end of life as a relief, even if it was not easy.

“[…] it is a relief for some people, because the person has stopped suffering, now for those who don’t think like that, it is a tremendous loss” (E45, 57 years, son).

The perceptions of family caregivers about the end of life beyond the event of death are presented in the next theme and the forms of support used in the face of this reality.

Theme 2 – End of life from the perspective of transcendence

In this theme, family caregivers reflected on the end of life beyond the event of death and on where they find support to deal with this reality. Many sought their spiritual/religious beliefs to give meaning to this experience.

“I don’t believe in the end of life, for me it doesn’t exist. I believe in another life. I think it’s the end of an incarnation […]” (E25, 60 years, wife).

“[…] sadness for the absence, loss of presence, but I have no doubt about the continuity” (E12, 40 years, daughter).

“[End of life] is going to heaven, it’s living life here and meeting God. This is how we see it, our faith is that: one day we will meet God. So, we think like this: it’s better there than here. Thus, there’s no sadness in me leaving here, or her leaving. We are sad because we will be separate, but we are sure that one day we will meet God, and it is better there” (E59, 79 years, husband).

Considering the long course of dementia and the losses that come along the way, a daughter finds support in the hope that her mother will no longer suffer when she dies.

“[…] for me, hope… for something much better on the other side” (E30, 37 years, daughter).

Another support found was the certainty of fulfillment of parental care. These interviewees feel relieved when they reflect on the care journey they are providing to the older adult with dementia:

“[…] if something [death] happens, I’m sure it’s mission accomplished, I did everything I could for him in life, and I did it out of love […]” (E62, 48 years, daughter).

“[…] mission accomplished, everything I could do, I did: provided good food, took her for a walk and we went to church […]” (E 23, 56 years, daughter).

Discussion

This study discussed the perceptions of caregivers of older adults with dementia about the end of life. There was a predominance of aged, married and Catholic women among the interviewees, with a high education level and socioeconomic status. Daughters and spouses stood out regarding the relationship to the older adult, which confirms the literature (Sharma et al., 2016; Xiong et al., 2020) and is anchored to the cultural history of women as responsible for providing care to family members (Dadalto & Cavalcante, 2021; Sharma et al., 2016).

With reference to the first theme, the end of life was interpreted in different ways by caregivers. Respondents reflected on the end being inevitable and life ephemeral. Recognizing the inevitability of death helps family caregivers prepare for and accept this reality, which can facilitate consensus on end-of-life decisions and make them stronger to get through this moment (Hovland-Scafe & Kramer, 2017). However, the participants of the presente study mentioned difficulties in defining the end. One interviewee said he was speechless. This finding refers to the definition of Le Breton (2005), according to which death and old age would be the nameless of modernity.

The end of life in the present investigation was also understood as a process, considering the progressive stages of dementia, which may be sudden or gradual, as reported by the interviewees. In the study by Armstrong et al. (2019), caregivers reported difficulty predicting the moment of death itself. For some, it took longer than expected, while others were surprised to realize that the dying process could take weeks. In these cases, the interviewees felt frustrated when they were already able to accept the death of the family member and it took a long time to happen; while others felt distressed by not knowing what the final hours and minutes of their loved one would be like (Armstrong et al., 2019). Fisher et al. (2022) indicated that caregivers felt prepared for the death of their family member when they understood that they were experiencing poor quality of life, and therefore death was also perceived as a relief. The end of life was also perceived as relief by one interviewee in the present study, since the family member would escape from their suffering.

This end-of-life process is sad and long according to the interviewees, and leads to anticipated grief in cases of caring for older adults with dementia. McLennon et al. (2021) identified that caregivers often present different emotions when faced with the possibility of losing a family member, including sadness, pain, anguish and suffering. The qualitative study by Bjorge et al. (2019) pointed out that the changes that occur in the person throughout the dementia process generate the feeling of gradually losing their family member, which refers to anticipatory grief - from diagnosis to the person’s death.

On the other hand, care, love and being with the person with dementia appeared as needs at the end of life in the present study. Being cared for and comforted by family members is associated with having a good quality of death (Gafaar et al., 2020; Takahashi et al., 2021), while not receiving support and having poor care provided by the family were related to worse quality of death for participants in the study by Gafaar et al., (2020).

According to Hovland-Scafe and Kramer (2017), it is important for the caregiver to express the feeling of love as a way to prepare for the death of the older person. It is essential to say goodbye, recognize the goals achieved, value the individual’s achievements, express affection and be grateful for the shared life, regardless of the person with dementia’s ability to understand (Hovland-Scafe & Kramer, 2017). The study by Peacock et al. (2014) on the experience of family caregivers when caring for an older person with dementia at the end of life found that the feeling of “being with” the aged person refers to a greater connection, permeated by intense care, concern and love between them and goes beyond physical presence. Feeling close helped family members to care for the older person even in the advanced stage of the disease, when there was no longer any communication or a sign of recognition between them. Another sensation reported was “being together” in the sense of being physically present at the end of the family member’s life, offering care, comfort and keeping awake in the final moments, in order to ensure that the person received adequate care (Peacock et al., 2014). According to Hovland-Scafe and Kramer (2017), it is important for the caregiver to express the feeling of love as a way to prepare for the death of the older person. It is essential to say goodbye, recognize the goals achieved, value the individual’s achievements, express affection and be grateful for the shared life, regardless of the person with dementia’s ability to understand (Hovland-Scafe & Kramer, 2017). The study by Peacock et al. (2014) on the experience of family caregivers when caring for an older person with dementia at the end of life found that the feeling of “being with” the aged person refers to a greater connection, permeated by intense care, concern and love between them and goes beyond physical presence. Feeling close helped family members to care for the older person even in the advanced stage of the disease, when there was no longer any communication or a sign of recognition between them. Another sensation reported was “being together” in the sense of being physically present at the end of the family member’s life, offering care, comfort and keeping awake in the final moments, in order to ensure that the person received adequate care (Peacock et al., 2014).

In the second theme “Death in the perspective of transcendence”, the interviewees reported finding support in spirituality, faith and beliefs to deal with the end of their family member’s life. The caregivers in this study, mostly Catholics, believe in God and in a continuity of life after death, with hope for a future without suffering for the older adult, which agrees with the findings of Ortega-Galán et al. (2019). Bousso et al. (2011) also state that spirituality gives meaning to the challenges of the end of life and favors the family’s adaptation to the illness and provides strength in the adversities related to the final stage of the disease, and later to the death of the older adult. Furthermore, when caregivers experienced spirituality in a positive way during the family member’s death process, it helped them to find reasons for gratitude despite the pain and suffering of the loss (Ortega-Galán et al., 2019). In addition, the integrative analysis of qualitative studies conducted by Bamford et al. (2018) with the aim of understanding the factors that favor a good end of life in dementia, found that end-of-life support should include addressing the emotional, spiritual and cultural beliefs of both the person with dementia and their family members.

Finally, the interviewees emphasized the feeling of accomplishment, having the care offered to the older person during dependence process with the advancement of dementia as a reference. Tuomola et al. (2016) emphasized that the act of caring emerges as a mission, either through the affective bond involved in the relationship with the family member or through the moral duty to do so. Supporting the person with dementia, for example, performing meaningful activities together, as reported by the interviewees of the present study, can be considered positive and promote a sense of relief in the lives of caregivers, as they understand that they have been able to fulfill their family obligations (Lindeza et al., 2020).

Study strenghts and limitations

The present study advances in understanding the different perspectives of family caregivers on the end of life of people with dementia and the support found in spirituality and in the feeling of accomplishment to face this long process of losses. As limitations, we highlight the small number of male caregivers interviewed, despite the literature indicating the predominance of women in this task, and the difficulty of finding studies on the end of life of people with dementia from the perspective of caregivers to discuss these results.

This study provides different perceptions of caregivers in detail which can be used by health professionals to guide other family caregivers of older adults with dementia about the end-of-life process. The results reveal the need to listen to these people’s perceptions, and then guide them about the end of life, welcoming their doubts, anxieties, values and beliefs. Future studies involving health professionals is necessary to investigate the best strategies that can be used to improve this communication, as they will help caregivers to better deal with this end-of-life process for their family members.

Conclusion

Understanding how caregivers perceive and experience the end-of-life process of the older adults with dementia helps to clarify the best ways for health professionals to approach and intervene with these families. By knowing and reflecting on the different and multiple meanings that were linked to the end of life, the importance of closer approximation with caregivers was observed in order to understand their personal demands, beliefs and values, which can directly interfere in the act of caring.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclose receipt of the following financial support for the research, authorship, and/or publication of this article: This study was partly financed by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES) – Finance Code 001.

Ethical approval

The project was approved by the Research Ethics Committee (Comitê de Ética em Pesquisa - COEP) of the Universidade Federal de Minas Gerais (UFMG) under the number CAAE: 13322819.8.0000.5149. All participants assigned a written informed consent term.

ORCID iDs

Barbara Pires de Andrade Lage Cabral

Marcella Guimarães Assis

Bárbara Pires de Andrade Lage Cabral studied Occupational Therapy (BSc) and Rehabilitation Sciences (MSc) at Universidade Federal de Minas Gerais (UFMG). Currently, she is a PhD student in Rehabilitation Sciences at UFMG, research line: Health and Rehabilitation of the Elderly; and she is a temporary professor at the Pontíficia Universidade Católica (PUC) of Minas Gerais state -specialization course in Gerontology. She has experience in the field of Occupational Therapy and Gerontology, working mainly on the following topics: dementias, education of family caregivers, and end-of-life care.

Giulia Martino Buttros studied Occupational Therapy at Universidade Federal de Minas Gerais (UFMG).

Eunice Maria Leite Brito studied Occupational Therapy at Universidade Federal de Minas Gerais (UFMG). She participated in the Academic League of Geriatrics and Gerontology as a student at the same institution. Currently, she woked as an occupational therapist in a nursing home and in a Specialized Rehabilitation Center.

Karla Cristina Giacomin studied Medicine (BSc) at Universidade Federal de Minas (UFMG), with residency and specialization in Geriatric Medicine at Louis Pasteur University (Strasbourg France); Master in Public Health, with emphasis in Epidemiology (UFMG) and PhD in Health Sciences Centro de Pesquisas René Rachou/Fundação Oswaldo Cruz (CPqRR/FIOCRUZ). She is a researcher member of the Center for Studies in Public Health and Aging (NESPE - FIOCRUZ/UFMG). She works as a professor of specialization courses in Gerontology at Pontifícia Universidade Católica de Minas Gerais (PUC-MG) and at UFMG. In 2017, she was selected as a consultant for the WHO (World Health Organization) in the axis “Health Policy for the Elderly”, holder of the Strategic Plan for Care and Active Aging (2017–2021) in Cape Verde.

Marcella Guimarães Assis studied Occupational Therapy (BSc) at Faculty of Medical Sciences of Minas Gerais, and Demongraphy (PhD) at Universidade Federal de Minas (UFMG). She is a professor at Department of Occupational Therapy, UFMG. Tutor of Occupational Therapy and coordinator of the Integrated Multiprofessional Health Residency Program at Hospital das Clínicas, UFMG. She is supervisor of Master’s and PhD course of the Postgraduate Program in Rehabilitation Sciences, area of concentration Health and Rehabilitation of the Elderly, at UFMG. Representative of the UFMG in the Municipal Council of the Elderly, in Belo Horizonte, Minas Gerais state, in the 2019–2021 biennium. She is a member of the editorial board of the Journal of Geriatrics and Gerontology and reviewer of the journals: Brazilian Journal of Physical Therapy, Brazilian Journal of Occupational Therapy, Dementia & Neuropsychologia. President of Gerontology of the Brazilian Society of Geriatrics and Gerontology, Minas Gerais section, biennium 2012–2014.

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