Perceived Needs of The Family Caregivers of People with Dementia in a Mediterranean Setting: A Qualitative Study (original) (raw)
Related papers
American journal of Alzheimer's disease and other dementias, 2015
The aim of this study is to identify the barriers and facilitators in dementia care with respect to information provision, communication, and collaboration from the perspectives of the person with dementia, family caregivers, and health care professionals over the course of the illness. A qualitative study using Focus-Group methodology was carried out in people with dementia, family caregivers, and health care providers. The categories that emerged from the analysis were insufficient information provided, specific dementia care needs, and acceptance of long-term care institutionalization from the people with dementia and caregivers' groups and insufficient communication between health care providers, differential information according to disease stage, and home care coordination from the health care providers' groups. The family is a key element in successful care coordination during dementia care provision. New effective strategies including self-management and emergent rol...
Understanding the needs of caregivers of persons with dementia: a scoping review
International Psychogeriatrics
Background: The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs. Method: A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework. Results: Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from ...
The demands of family caregivers of elderly individuals with dementia
Revista da Escola de Enfermagem da USP, 2010
As finalidades deste estudo foram identificar as características dos cuidadores de idosos demenciados, os tipos de demandas de cuidados e relacionar a demanda com o estágio da demência. O estudo seccional e observacional foi conduzido em 2004, com 104 idosos e 90 cuidadores, em Ribeirão Preto/SP, por meio do instrumento OARS e de um questionário para o cuidador. Dos 104 idosos, 66.3% eram mulheres, a idade média de 75.5 anos, sendo que 86.5% deles tinham cuidadores. Entre os cuidadores, 80% eram mulheres, membros da família, com idade média de 52.3 anos. Dedicavam 15.10 horas/dia para a atividade de cuidar, sem nenhuma ajuda. Encontrou-se importante relação entre a sobrecarga do cuidador, o esforço físico e emocional, e o estágio da demência. A sobrecarga emocional foi maior nos estágios iniciais e tardios da demência, mas a diferença foi estatisticamente não-significante. Os resultados atuais revelam a urgente necessidade de planejar estratégias de suporte formal e informal para cuidadores de idosos brasileiros com demência.
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...
Needs Detection for Carers of Family Members with Dementia
Healthcare, 2021
Aim: To determine the perceived needs of carers of non-institutionalized family members that suffer from dementia. Methods: Two-steps qualitative study by focus groups of relatives in three centres of different characteristics from the Girona Health Region (step 1) and two in-depth interviews with significant professionals in dementia care (step 2). The analysis was performed based on the interpretation of the transcribed data and the bottom-up coding of categories and themes. The information was triangulated and coding was agreed upon. Results: There were three groups, 26 main carers of community-dwelling relatives with dementia in step 1 and two in-depth interviews with dementia-specialised healthcare and social care professionals in step 2. The demands were categorised according to three main themes: whether they were addressed to the members of care services for more direct and close care, to the agencies for a better joint working and less fragmented system, or to society for b...
Iranian Red Crescent medical journal, 2012
Due to the increase in the number of Alzheimer's patients in Iran and also the limitation of cultural knowledge about caring of these patients, this study was designed to explore the perceptions of Iranian caregivers about caring Alzheimer patients in the elderly care homes. A qualitative content analysis method was conducted on two elderly care homes of Shiraz/Iran, during 2009-2011. Fourteen key informants (10 women and 4 men, between 25-35 years of age), who had been working in elderly care homes caring for the elderly with Alzheimer disease for about 1-11 years (Mean=30 months) were selected by purposive sampling method. The caring experience and ability of transferring their experience to others were the main criteria for selection of the participants. They were participated in 2 focus groups and 4 interviews. Nearly, 800 initial codes were extracted and categorized into 3 groups of "multidimensional care", "going along with the patients" and "need ...
Inquiry : a journal of medical care organization, provision and financing, 2017
Care of the elderly with dementia represents one of the major challenges for the modern society worldwide. The burden of dementia care often falls on the family members, entailing heavy psychosocial and economic consequences. The aim of this study was to evaluate the caregiver's perspective concerning the support for disease management on behalf of the physicians and the local Sicilian administrations (Italy), and the burden of care and effects on their lifestyle, to propose new prevention strategies and service for managing dementia and caregiver's burden. Fifty-nine caregivers of Italian elderly people with dementia (mean age, 73; age range: 63-83) were interviewed, and 55 of them completed an ad hoc self-report questionnaire composed of 54 multiple-choice questions. Our findings suggest that caregivers need more information on the disease's management, as well as on how to deal with the stress due to the disease burden. Moreover, a negative perception about the servic...
Journal of Transcultural Nursing, 2012
Purpose:This study explored the meaning of quality of life (QOL) for Sardinian caregivers of people affected with Alzheimer's disease and factors improving and worsening their QOL. Design: The phenomenological method was used to study 41 Alzheimer's disease caregivers living on the western coast of Sardinia, Italy. Interviews were conducted and analyzed using Cohen, Kahn, and Steeves's approach. Findings: Extracted themes were the following: unity and cooperation in the family; freedom/independence; having time for themselves; serenity/tranquility; and well-being and health. Caregivers identified factors that they believed worsened or improved their QOL. Family was particularly important for these caregivers. Discussion and Practice Implications: This study reinforces previous research about cultural influence on QOL and emphasizes the importance of nurses being culturally sensitive. Since Sardinia is a rural region, these findings may be useful for nurses working with caregivers in other rural settings.
[Needs and expectations of Alzheimer's disease family caregivers]
Revue d'épidémiologie et de santé publique, 2012
Family members of people suffering from Alzheimer's disease play a major role in providing daily life care for their relatives. Compared to non-caregivers, they present increased risks of mortality as well as psychological and physical co-morbidity. Altered relationships between caregivers and medical staff and dissatisfaction with the quality of help provided tend to increase the risk of depression and anxiety disorders among caregivers. The present study aimed at exploring the needs and expectations of family caregivers of patients with Alzheimer's disease who request medical assistance for their relatives. The present analysis is an ancillary study of a large multicentric controlled randomized study designed to assess the efficacy of three non-pharmacological treatments in Alzheimer's disease, in which 645 mild-to-moderate Alzheimer patients were enrolled. Needs and expectations of the caregivers were assessed with a French scale of patient expectations for medical co...