Family caregivers' experiences of interaction with people with mild‐to‐moderate dementia in China: A qualitative study

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.

Download Full-text

Essential knowledge for family caregivers: a qualitative study

International Journal of Palliative Nursing ◽

10.12968/ijpn.2013.19.8.383 ◽

2013 ◽

Vol 19 (8) ◽

pp. 383-388 ◽

Cited By ~ 12

Author(s):

Jennifer K Angelo ◽

Richard Egan ◽

Kate Reid

Keyword(s):

Qualitative Study ◽

Family Caregivers ◽

Essential Knowledge

Download Full-text

Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

Palliative Medicine ◽

10.1177/0269216316673552 ◽

2016 ◽

Vol 31 (8) ◽

pp. 726-733 ◽

Cited By ~ 24

Author(s):

Nathan Davies ◽

Greta Rait ◽

Laura Maio ◽

Steve Iliffe

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Psychological Impact ◽

Third Sector ◽

Life Care ◽

People With Dementia ◽

Diagnosis Of Dementia ◽

Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Download Full-text

Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study

Western Journal of Nursing Research ◽

10.1177/01939459211050957 ◽

2021 ◽

pp. 019394592110509

Author(s):

Kelly E. Stacy ◽

Joseph Perazzo ◽

Rhonna Shatz ◽

Tamilyn Bakas

Keyword(s):

Content Analysis ◽

Qualitative Study ◽

Family Caregivers ◽

Lewy Body ◽

Assessment Tool ◽

Lewy Body Disease ◽

Analysis Approach ◽

Convenience Sample ◽

Caregiver Interventions ◽

Disease Family

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one’s own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

Download Full-text

Experience of family caregivers of community-dwelling stroke survivors and risk of elder abuse: a qualitative study

The Journal of Adult Protection ◽

10.1108/jap-03-2014-0007 ◽

2014 ◽

Vol 16 (5) ◽

pp. 276-293 ◽

Cited By ~ 7

Author(s):

Celia Chow ◽

Agnes Tiwari

Keyword(s):

Qualitative Study ◽

Family Caregivers ◽

Local Community ◽

Service Providers ◽

Elder Abuse ◽

Community Dwelling ◽

Stroke Survivors ◽

Content Type ◽

The Disabled ◽

Personal Resilience

Purpose – The purpose of this paper is to explore the following questions. First, what are the experiences of family caregivers in caring for community-dwelling stroke survivors? Second, what services help or do not help the caregivers in managing their caregiving role? Design/methodology/approach – A qualitative study was conducted with a total of six focus group interviews with 29 stroke caregivers selected using convenience sampling in a local community centre. All interviews were recorded and transcribed for content analysis. Findings – The results pointed to three main themes working together to facilitate desirable outcomes in caregiving and prevent elder abuse: factors contributing to caregiver stress and factors that have a buffering effect on caregiver stress and unmet needs identified from caregivers’ experiences. Research limitations/implications – The authors found that there were a number of factors contributing to caregiver stress. The findings matched with the concept that caregiver stress should not be considered as the primary cause of elder abuse. Findings provided information for further research to investigate positive coping and adjustment for stroke survivors, caregivers and their families. Practical implications – Policy makers and service providers may consider specific policies and tailor-made services to enhance the effectiveness of current practice. The themes emerging from the study could be further reviewed in a longitudinal way to explore the cost-effectiveness, the outcomes and trajectory of interventional programmes. Social implications – Education would be essential to let the public understand caregivers’ difficulties and needs. Prevention of elder abuse may be approached with a range of risk factors for both perpetrating and being elder abuse victim. Originality/value – From the findings of the study, the authors found that there were service gaps within policy and interventions. Concrete suggestions for improving the public's attitude and public facilities/transport for the disabled were captured in the study. In addition to personal resilience, caregivers had a strong wish for a supportive environment and services that would facilitate a better caregiving outcome.

Download Full-text