“We Don't Feel so Alone”: A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19

Masoud, Sara S.; Meyer, Kylie; Sweet, Lauryn Martin; Prado, Patricia J.; White, Carole L.

doi:10.3389/fpubh.2021.660144

Cited by 43 publications

(52 citation statements)

References 29 publications

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“…[575][576][577] In the earlier stages of Alzheimer's Association also provides regularly updated guidance for dementia caregivers and professional care providers as the pandemic unfolds. In addition, the challenges of the pandemic have motivated some service providers to transition their support programs toward remote/virtual care delivery which has helped to extend the reach and accessibility of dementia care innovations, 584,585 although concerns remain about the "digital divide" facing caregivers who do not have reliable broadband access or do not regularly use the internet.…”

Section: Covid-19 and Dementia Caregivingmentioning

confidence: 99%

2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,549

664

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $271.6 billion in 2021. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes -costs that have been aggravated by COVID-19. Members of the dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI 700

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Section: Covid-19 and Dementia Caregivingmentioning

confidence: 99%

2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,549

664

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“…Goodman-Casanova et al ( 94 ) described a support, monitoring and reminder system and a television-based assistive service to use during the COVID-19 pandemic. Memory café online described by Masoud et al ( 95 ) also arose due to COVID-19. A telehealth solution is mentioned by Kabir et al ( 96 ), this solution is an application on a smartphone or tablet.…”

Section: Discussionmentioning

confidence: 95%

Technological Applications Contributing to Relieve Care Burden or to Sleep of Caregivers and People With Dementia: A Scoping Review From the Perspective of Social Isolation

Huisman

Kort

2022

Front. Public Health

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The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.

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“…For some vulnerable groups in this pandemic, such as the elderly (Armitage & Nellums, 2020 ), harnessing online technologies to promote social connectedness has proved a challenge. The ability to enhance social connectedness through online communication hinges upon a range of factors, for example, socioeconomic status, online literacy, level of disability and method of online communication (Masoud et al, 2021 ). Research does however demonstrate that if people have access and ability, attaining a sense of belonging and social connectedness online is indeed possible and associated with improved mental health (Armitage & Nellums, 2020 ; Clark et al, 2018 ).…”

Section: Discussionmentioning

confidence: 99%

Living with cystic fibrosis during the COVID-19 pandemic: a social connectedness perspective

Harrigan

Bennett

Mulrennan

et al. 2022

International Journal of Qualitative Studies on Health and Well

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Purpose This study explores the concept of social connectedness for adults with Cystic Fibrosis (CF), generally and during the onset of the COVID-19 pandemic, to help inform contemporary CF healthcare. Social connectedness is an essential component of belonging and refers to an individual’s sense of closeness with the social world. Unique disease factors make exploration of social connectedness pertinent, added to by COVID-19, with the CF population potentially facing increased risk for severe illness. Methods Seventeen adults with CF in Western Australia undertook interviews, with findings categorized as overarching themes. Results In a general sense, participants described social connectedness challenges caused by CF, despite which they reported meaningful connections that benefits their mental and physical health. Within a COVID-19 specific context, participants demonstrated resilience in the face of adversity, highlighted the importance of empathy in relation to the pandemic, and described how social support is both an outcome and enhancer of social connectedness. Conclusions This study contributes to limited social connectedness literature within CF and chronic illness in general, highlighting the importance of social connectedness awareness raising, assessments and interventions in CF healthcare inside and outside the COVID-19 pandemic.

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“We Don't Feel so Alone”: A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19

Cited by 43 publications

References 29 publications

2022 Alzheimer's disease facts and figures

2022 Alzheimer's disease facts and figures

Technological Applications Contributing to Relieve Care Burden or to Sleep of Caregivers and People With Dementia: A Scoping Review From the Perspective of Social Isolation

Living with cystic fibrosis during the COVID-19 pandemic: a social connectedness perspective

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