Caring for a person with dementia during the COVID-19 pandemic: A qualitative study with family caregivers

Background:Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.Methods:Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.Results:Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.Conclusions:The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.

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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

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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.

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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.

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Experiences and Perspectives of Family Caregivers of the Person with Dementia

Dementia Care ◽

10.1007/978-3-319-18377-0_12 ◽

2016 ◽

pp. 189-214

Author(s):

Janis McGillick ◽

Maggie Murphy-White

Keyword(s):

Family Caregivers ◽

Person With Dementia

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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.

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