Needs of Dementia Family Caregivers in Spain During the COVID-19 Pandemic

González, Nuria Carcavilla; Pozo, Ana Sofía; González, Belén; Moral-Cuesta, Débora; Roldán, José Joaquín; Erice, Victoria; Remírez, Ana de Ganuza

doi:10.3233/jad-201430

Cited by 37 publications

(38 citation statements)

References 17 publications

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“…Challenging behaviour seemed to increase in people with dementia, mainly triggered by extended isolation [ 27 , 28 ]. Family carers experienced psychological problems, and felt less supported when they had to handle challenging behaviour or offer meaningful activities to their relative [ 29 ]. Less attention has been paid to the needs of people with dementia, their family carers and HCP during times of limited social contact, especially for community-dwelling people with dementia.…”

Section: Introductionmentioning

confidence: 99%

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Smaling

Tilburgs²,

Achterberg

et al. 2022

IJERPH

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Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

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Section: Introductionmentioning

confidence: 99%

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Smaling

Tilburgs²,

Achterberg

et al. 2022

IJERPH

View full text Add to dashboard Cite

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“…The volume of informal care has already been relatively large in most European countries, making up most of the care received by those aged 50 years or older [ 8 , 9 ]. Informal caregivers of people with dementia can feel heavily burdened by their care responsibilities, often resulting in stress-related symptoms such as anxiety [ 10 ], mood, or sleep disorders [ 11 ]. The strain on informal caregivers and people with dementia has become even more present in light of the COVID-19 pandemic as routine professional care services were postponed or decreased [ 12 ], inevitably causing a greater reliance on home care as one pillar of the health care system [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review

Bastoni¹,

Wrede²,

Silva³

et al. 2021

JMIR Aging

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Background The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results We identified technologies designed to be used “by informal caregivers,” “by people with dementia,” and “with people with dementia.” Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care.

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“…A study conducted in the United States with caregivers of childhood cancer survivors (55% in active surveillance/follow-up care) found that about half of caregivers were not sleeping as well during the pandemic ( Wimberly et al, 2021 ). Additionally, a study in Spain of informal caregivers of persons with dementia found that 34% believed that the pandemic had contributed to sleep disorders ( Carcavilla et al, 2021 ). Although the current study did not assess changes in sleep quality, taken together, these studies suggest that the pandemic may negatively impact the sleep quality of informal caregivers for older adults and suggest the need for intervention.…”

Section: Discussionmentioning

confidence: 99%

“…Yet, limited pandemic-related research has focused on informal caregivers. A study conducted in Spain found that among caregivers of persons with dementia, 21% reported experiencing sleep disturbances during mandatory confinement ( Carcavilla et al, 2021 ), while a study, conducted in the United States during the pandemic, found that short and long-term caregivers were more likely to report fatigue than non-caregivers ( Park, 2021 ). Another study surveyed members of the University of Pittsburgh’s University Center for Social & Urban Research registry and found that caregivers were more likely to report less ability to participate in social activities and to have anxiety, depression, fatigue, and sleep disturbance than non-caregivers during the pandemic ( Beach et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study

Greaney

Kunicki

Drohan

et al. 2022

Gerontology and Geriatric Medicine

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Sleep is an integral component of health. The impact of the COVID-19 pandemic on sleep quality among informal caregivers, individuals who provide unpaid care or assistance to family members or friends, assisting older adults is not well understood. Therefore, informal caregivers in the United States providing care for individuals aged 50+ were recruited via Amazon’s Mechanical Turk, an online platform for enrolling study participants into social and behavioral science research, to complete an online survey. The sample of informal caregivers ( n = 835) was 69% male and 55% non-Hispanic. Multivariable linear regression models were constructed to assess the associations between sleep disturbance scores (SDS) and sleep-related impairment scores (SIS) and caregiving-related measures (hours caregiving/week, length of time spent caregiving, and caregiver burden), demographics, and region of the United States. The analysis determined that Black (β = 2.6, 95% CI [−4.3, −0.9]) and Asian informal caregivers (β = −1.8, 95% CI [−3.4, −0.3]) had lower mean SIS than White caregivers, the referent group. In addition, increasing caregiver burden was associated with increased SDS (β = 0.8, 95% CI [0.6, 1.0]) and SIS (β = 1.3, 95% CI [0.7, 1.6]). In conclusion, higher caregiver burden was associated with higher SIS and SDS, suggesting that informal caregivers' sleep should be assessed, and when needed interventions should be offered.

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Needs of Dementia Family Caregivers in Spain During the COVID-19 Pandemic

Cited by 37 publications

References 17 publications

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study

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