Characteristics of care and caregivers of Alzheimer's patients in elderly care homes: a qualitative research (original) (raw)
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Frontiers in Psychology, 2021
Introduction: Due to the long-term and progressive nature of Alzheimer's disease, these patients need caregivers who will be responsible for their long-term care and who may then experience an increasing burden related to the progressive disease course, so it is important to understand the experiences of caregivers. The aim of this study was to explain the experience of family caregivers regarding care of Alzheimer's patients. Methods: The present qualitative study employed a conventional content analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 11 qualified caregivers enrolled in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. Interviews were recorded, transcribed and analyzed through Graneheim and Lundman style content analysis and data management was done with MAXQDA software. In order to achieve the accur...
Living with and caring for patients with Alzheimer's disease in nursing homes
Journal of caring sciences, 2013
Many of the patients with Alzheimer disease are taken care of in nursing homes. However the literature on the experiences of Iranian formal caregivers of older adults with Alzheimer disease is scarce. This qualitative study explored the caring experiences of formal caregivers in nursing homes that can improve the quality of care and patient's quality of life. This qualitative study used the principles of descriptive content analysis to analyze these data. Our participants included 11 female and 3 male caregivers aged 25 to 38 years who were selected for interviewing based on a purposive sampling method. The data were analyzed with a content analysis method. Nearly 900 initial codes were extracted and categorized into 6 main themes including "managing difficult behaviors", "dependence on familial care", "continuum of different feelings", "care for a child", "living with the patients" and "not understanding the patients",...
Frontiers in Psychology, 2021
Introduction: The needs of Alzheimer's patients are very complex and diverse and many of them are considered unmet needs. Understanding and responding to the unmet and complex needs of Alzheimer's patients can affect the quality of care. Therefore, the present study aimed to explain the perception of formal and informal caregivers of the unmet needs of Iranian Alzheimer's patients.Methods: The present qualitative study employed a Directed Content Analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 19 qualified caregivers enrolled (11 informal caregivers and 8 formal caregivers) with the mean age of 46.05 ± 10.98 years in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. After recording and transcribing, the data were analyzed using the Elo and Kyngas method based on the National Consensus Project framework (N...
Problems Faced by Caregivers of Alzheimer’s Patients
Volume 36, Issue 3, 2021
Care giving is a difficult task especially when it involves physical or mental retardation, and it leaves marked negative impact on primary caregivers. Alzheimer is one such ailment where the patient is totally dependent on others for each bit of their life, so the care giving of Alzheimer patients become more burdensome. The aim of this research was to examine the burden and difficulties of caregivers dealing with Alzheimer's patient, especially those living at home. Case study method was employed for this research. Eight caregivers were selected purposively, and content analysis was used to examine their perspective regarding burden and challenges. In the assessment of content, the gathered qualitative information was analyzed in a deductive manner. The results of the analysis showed that caregivers face daily challenges in terms of physical and psychological health issues, social support and resources, family conflicts, crisis, and criticism. The outcomes further elaborated t...
Dementia, 2017
This article discusses Iranian family members’ attitudes towards the culturally profiled nursing home, their relationships with the staff, the obstacles, their hopes and their fears. This study is based on qualitative research using 29 semi-structured interviews with family members who had previously been informal caregivers, as well as using fieldwork, all in the same nursing home. The interviews were analysed by the three steps of content analysis. The results show the identification of three main categories with nine main subcategories. The categories and subcategories in the table clarify and explain how the interviewees tended to compare the situation in Iran with that in Sweden, how they perceived the situation in Sweden and finally how they also saw the culturally profiled nursing home.
Linköping University Medical Dissertations, 2018
Introduction: Today's multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with "cultural" backgrounds other than their own. The world's population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual's lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the "old" to the "new" way of life and from a life without dementia to a life with dementia involve making sense of life's changes. Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives' decisions to end caregiving at home, and Iranian families' and relatives' attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of "home". Method: This thesis is based on more than one year's fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography. Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people. Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are Dementia across cultural borders 2 cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home. In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia's personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in. Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents' sociocultural background, generational differences and incoherence, aligned with staff members' different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person's native language was not enough to claim that they were actually communicating. Family caregivers' decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person's autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents' daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them. The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, "home", was a place to be and to live.
Difficulties of Caregivers of Individuals Suffering from Alzheimer’s Disease
Socijalna psihijatrija
U današnjem društvu postoji jasan trend porasta broja osoba starije životne dobi pa time i sve veća statistička značajnost broja osoba oboljelih od Alzheimerove bolesti što generira povećanu potrebu adekvatne skrbi za oboljele. Uz formalne oblike skrbi (pružene od profesionalaca iz sustava zdravstvene i socijalne skrbi), neformalna njega značajan je resurs u pružanju skrbi osobama s demencijom. Neformalni njegovatelji su pojedinci koji se dobrovoljno brinu za člana obitelji ili prijatelja koji se suočava sa bolešću, invaliditetom ili bilo kojim drugim stanjem koje zahtijeva posebnu pažnju. S obzirom na tijek i duljinu trajanja Alzheimerove bolesti i sama skrb za oboljelog je dugotrajna i iscrpljuća, a uključuje sve razine funkcioranja njegovatelja pa ju je potrebno sagledavati u kontekstu kako ekonomskog, tako i emocionalnog, mentalnog i fizičkog stanja njegovatelja. Iako može imati i neke blagotvorne aspekte, skrb za oboljeloga je obično vrlo stresna i može u značajnoj mjesti utjecati na zdravlje i dobrobit njegovatelja te je stoga potrebno razmotriti probleme i opterećenja s kojima se susreću njegovatelji osoba oboljelih od Alzheimerove bolesti. / In modern society, the number of elderly individuals is higher and so is the statistical significance of people living with Alzheimer's disease. This trend results in a higher demand for adequate care for such patients. Along with formal care (provided by social workers and other health care professionals), informal care has become a significant resource in the nursing of individuals with dementia. Informal caregivers are individuals who voluntarily attend to the needs of a family mwember or a frend living with illness, handicap, or any other condition that requires special needs. Considering the course and duration of Alzheimer's disease, the nursing of patients can also be lengthy and exhausting. Moreover, all aspects of a caregiver's job must be taken into consideration starting the mental, emotional, and physical health to nursing expences. Although there are positive aspects, nursing an individual with dementia is extremely stressful and significantly affect the health and wellbeing of the caregiver, and therefore it is necessary to take into consideration all difficulties and problems caregivers of people living with Alzheimer's disease may encounter.
International Journal of Geriatric Psychiatry, 2002
Background Dementia is a rapidly growing problem in all parts of the developing world. Such societies are characterised by low levels of awareness regarding dementia as a chronic degenerative brain syndrome, and by an absence of supportive health and welfare services. There is reliance upon families as the cornerstone of support and care. However, surprisingly little is known of the care arrangements for people with dementia and the strain experienced by their family caregivers. Method In a qualitative study of 17 caregivers of people with Alzheimer's disease identified through an innovative casefinding program in Thrissur, South India, we obtained information on the range of care arrangements, attitudes towards care giving roles and sources of strain. Results The majority of caregivers were young women, often daughters-in-law of women with dementia. The principal sources of caregiver strain were behavioural problems associated with the dementia syndrome, and incontinence. Strain was exacerbated by the lack of supportive response by local health services, and by lack of support and, sometimes, criticism from other family members. Family conflict was commonly encountered. The majority of caregivers experienced significant deterioration in their mental health. One caregiver unfortunately committed suicide after the death of her husband. Conclusions There is a clear need for more education, advice and support for families affected by dementia. Community services in developing countries should consider training existing domiciliary outreach services, the community-based multipurpose health workers, to identify and support family caregivers.
مجله دانشکده پزشکی اصفهان, 2015
Background: Alzheimer's disease is known to be a serious burden in all communities throughout the world. It affects both interpersonal and social relations. Since the disease has usually a long and progressive course, the need for caregivers is increasing. The aim of our study was to evaluate the relationship between the predisposing factors and practice and demographic variables in caregivers of patients with Alzheimer's disease. Methods: In this descriptive, cross-sectional and analytical study, the data were collected using a researcher-made questionnaire. Validity of the questionnaire was approved by experts and its reliability was checked via Cronbach's alpha. Predisposing factors were studied with 30 questions on knowledge, 14 on attitude and 15 on practice. The relationship between independent variables and predisposing factors were examined using multiple regressions test. Findings: 92 percent of all caregivers were females between the 41-60 years of age. Most of...
Training of Formal Caregivers Dealing with Alzheimer Diseased Patients at Helwan City Cairo Egypt
American Journal of Nursing Science, 2017
Alzheimer prevalence increases with aging and in 2012 it is estimated that Alzheimer worldwide will affect 35.6 million people, this number will double by 2030 and more than triple by 2050. The aim of this study is to evaluate the effect training program for formal caregivers' dealing with Alzheimer diseased patients at Helwan City Cairo Egypt. Design: A quasiexperimental research design was used. Setting: The study was conducted at four available geriatric homes and outpatient psychiatric clinics in Helwan City. Sampling: A purposive sampling was used for selection of forty formal caregivers'. Tool: A self-designed semi-structured interview questionnaire was used, it included demographic information as; age, sex, professional qualification, and experience, formal caregiver's knowledge regarding Alzheimer disease as definition of Alzheimer, causes, risk factor, prevention and control, attitude questionnaire as I feel confident about people with Alzheimer disease, and I feel uncomfortable being around Alzheimer diseased people and related dementia, and formal caregiver's practices as Practice methods of non-therapeutic care to deal with Alzheimer patients, and Configure appropriate environment to Alzheimer patients Results: The pre /posttests among formal caregivers revealed that overall knowledge, attitude and practices improved with highly statistically significant differences at p <0.001 that approved the hypothesis of implementing training program for formal caregivers. Conclusion: The training program significantly brought out improvements in formal caregivers knowledge, attitude and practices regarding Alzheimer diseased patients. Recommendations: The study can be replicated with a larger number of formal caregivers for generalizations of the results, and further studies conduct to improve nurse's knowledge and practices regarding caring for Alzheimer diseased patients.