Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

Harris, Melissa L.; Titler, Marita G.

doi:10.1177/01939459211055773

Cited by 13 publications

(9 citation statements)

References 27 publications

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“…Increased carer stress, fatigue and burn-out has also been found in other studies 3 14 15. In one study 21 family carers, severe loneliness, and an overwhelming sense of loss and concern about worsening cognition in the person with dementia was identified 16. Concern about cognition and the impact of restrictions on cognition and neuropsychiatric symptoms has been identified more widely 17 18.…”

Section: Introductionmentioning

confidence: 72%

“… 3 14 15 In one study 21 family carers, severe loneliness, and an overwhelming sense of loss and concern about worsening cognition in the person with dementia was identified. 16 Concern about cognition and the impact of restrictions on cognition and neuropsychiatric symptoms has been identified more widely. 17 18 For example, one spanish study identified an increase in neuropsychiatric symptoms in people with Alzheimer’s Disease and Mild-Cognitive impairment during 5 weeks of lockdown, with agitation, apathy and aberrant motor behaviour being most prominent.…”

Section: Introductionmentioning

confidence: 99%

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What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study

et al. 2022

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ObjectivesThe COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers.DesignOur mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia.SettingThe study took place in the South-East of England.ParticipantsExisting study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations.MeasurementInterviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis.Results16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns.ConclusionsOur study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place.

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Section: Introductionmentioning

confidence: 72%

Section: Introductionmentioning

confidence: 99%

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study

et al. 2022

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“…For caregivers of long-term patients, the changes may mean intensifying the hardship of caregiving on their existing conditions of their wellbeing. An inevitable surge of studies cropped up in the literature amidst the pandemic examining the kinds of problems and challenges faced by the caregivers of patients with life-long conditions (for example, dementia - Harris & Titler, 2021;Rainero, Bruni, Marra, Cagnin, Bonanni, Cupidi et al, 2021;cancer -Zeng, Cao, Zhao, Li, & Hou, 2021). Anderson and colleagues (2021) conducted a study with 604 family caregivers in the province of Alberta, Canada reported that the pandemic had affected the participants' emotional stability and mental health.…”

Section: Introductionmentioning

confidence: 99%

Psychological Issues on Family Caregivers of Stroke Patients in Brunei Darussalam: In the Era of Pandemic Covid-19

Mahalle

Yahya

Zailani

2022

eqr

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Family caregivers play an important role in providing main support for family members with a disability in order for them to function normally in their everyday life. The main goal of this research study is to promote psychological health awareness of stroke family caregivers in Brunei Darussalam, especially during the pandemic of Covid-19. This study concentrated particularly on long-term family caregivers who provide care to stroke family members who were severely affected by the disease that caused them to heavily depended on their family caretakers. This qualitative research involves interviewing 8 locals participants using snowballing sampling and a thematic analysis approach that investigate thoroughly the challenges and identifies the needs required by family caregivers in Brunei. The findings of the study discovered that all family caregivers experience psychological issues such as ‘Depression’ and ‘Stress’ and are in need of family support and self-care to reduce challenges they experience such as emotional exhaustion, physical problem, sleep deprivation, financial issues, and accessibility to basic needs in caregiving.

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“…This study demonstrated the feasibility and acceptability of 1 potential tool for the toolkit prototype. The first author also conducted semistructured virtual interviews with 21 family caregivers and 2 focus groups with 7 PLWD to explore their experiences during the COVID-19 pandemic [ 29 ]. Findings showed a substantial need for in-home care strategies to manage stress among PLWD and care partners, specifically strategies not reliant on in-person training or interaction with people outside the home.…”

Section: Introductionmentioning

confidence: 99%

Development of a Home-Based Stress Management Toolkit for Dementia Caring Dyads: Protocol for a Pilot Intervention Development and Feasibility Study

Harris¹,

Houtven²,

Hastings³

2022

JMIR Res Protoc

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Background People living with dementia (PLWD) and their care partners (dementia caring dyads) are at a heightened risk of experiencing stress-related symptoms and conditions. Yet, many dyadic stress management interventions have had limited uptake by health care systems and in the community. An intervention that combines simple, safe, easy-to-use, nonpharmacologic tools (eg, animatronic social pets, weighted blankets and garments, aromatherapy and bright light therapy devices, acupressure, and massage tools) that can be used in the home may be a promising approach to promote stress management among dementia caring dyads. Objective The proposed study aims to develop and user test a dyadic toolkit intervention composed of simple, tangible stress management tools for community-dwelling PLWD and their care partners. This study will also explore the feasibility of collecting several stress-related outcome measures to inform measurement selection for future studies. Methods A human-centered design (HCD) approach will be used to increase the likelihood of developing an intervention that will be translatable to real-world settings. This study consists of 2 phases. The first phase will address the discover, define, and design stages of HCD using qualitative focus groups with dementia caring dyads (N=12-16 dyads). Dyadic focus groups (3-4 groups anticipated) will be convened to understand participants’ stress experiences and to co-design a stress management toolkit prototype. Rapid qualitative analysis will be used to analyze focus group data. In phase 2, the toolkit prototype will be user tested for 2 weeks in a new sample to address the validation step of HCD. A within-subjects (n=10 dyads), pre-post design will be used with measures of usability (frequency of toolkit use), feasibility (enrollment and withdrawal rates, adverse events/injuries), and acceptability (satisfaction, benefit) collected via questionnaires (at the end of weeks 1 and 2 of user testing) and focus groups (n=3-4 dyads/group at the end of week 2). The feasibility of collecting participant-reported, stress-related outcomes (neuropsychiatric symptoms of dementia, caregiver stress, dyadic relationship strain) and salivary cortisol as a physiologic measure of stress will be assessed at baseline and after user testing. Results This study will yield a working prototype of a stress management toolkit for dementia caring dyads, as well as preliminary data to support the feasibility and acceptability of the intervention. User testing will elucidate areas to refine the prototype and provide data to inform preliminary testing of the intervention. As of September 2022, this study has received institutional ethics board approval with phase 1 recruitment anticipated to begin January 2023. Conclusions Few interventions have focused on combining simple, safe, low burden tools to promote stress management among community-dwelling dementia caring dyads. By involving families and exploring feasibility and acceptability at the onset of development, this intervention will have greater potential to be implemented and sustained in the future. Trial Registration ClinicalTrials.gov NCT05465551; https://clinicaltrials.gov/ct2/show/NCT05465551 International Registered Report Identifier (IRRID) PRR1-10.2196/43098

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Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

Cited by 13 publications

References 27 publications

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study

Psychological Issues on Family Caregivers of Stroke Patients in Brunei Darussalam: In the Era of Pandemic Covid-19

Development of a Home-Based Stress Management Toolkit for Dementia Caring Dyads: Protocol for a Pilot Intervention Development and Feasibility Study

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