COVID-19 resources on Dementia

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The impacts of COVID-19 on unpaid carers of adults with long-term care needs and measures to address these impacts: a rapid review of evidence up to November 2020

Journal of Long-Term Care

Context: Unpaid carers are the backbone of long-term care (LTC) systems around the world. The COVID-19 pandemic has further increased the pressure many unpaid carers experience; however, their experience has been largely absent from public reporting. Objective: We aim to map the available evidence of the impacts of COVID-19 on unpaid carers of adults (>18 years) with LTC needs as well as of measures implemented to mitigate these effects and how well they have worked. Method: We conducted a rapid review of the academic and grey literature on unpaid carers of adults with LTC needs during the COVID-19 pandemic, covering the period until November 2020. Findings: We identified six key themes that highlight the impacts of COVID-19 on unpaid carers of people living in the community. These are: care commitment, concerns related to COVID-19, availability of formal and informal support, financial implications, carer health and well-being, and carers’ adaptability. In addition, we captured aspects identified by unpaid carers supporting people in residential care settings under the theme ‘carers of people in residential settings’. Finally, we reported evidence of measures implemented to mitigate the impacts on carers. This included the use of technology and the receipt of financial assistance and support for working carers. Limitations: The evidence reported in this review is based largely on cross-sectional data and some of the data reported relies on convenience samples. Implications: We highlight the financial and health impacts that many unpaid carers experience. Given the vital support carers provide to adults with LTC needs, policy makers should consider supporting unpaid carers to mitigate the negative impacts on their lives.

Last updated on hub: 26 May 2021

‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

Age and Ageing

People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

Last updated on hub: 26 May 2021

Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

BMC Geriatrics

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. Methods: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. Results: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. Conclusions: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

Last updated on hub: 20 May 2021

“Advocating every single day” so as not to be forgotten: factors supporting resiliency in adult day service centers amidst COVID-19-related closures

Journal of Gerontological Social Work

Adult day centers (ADCs) are nonresidential settings that support the health and social needs of vulnerable older adults. Due to ADCs’ congregate nature and participants’ compromised health status, many ADCs have been forced to close during the COVID-19 pandemic. It is unknown how closures have impacted service delivery at ADCs. Guided by the Resiliency Activation Framework, we (a) identified consequences resulting from closures of ADCs during the COVID-19 pandemic and (b) described factors that have enabled the ADC community to remain resilient in the wake of challenges brought on by the pandemic. We conducted 2 focus groups in California (n = 12), and individual interviews with ADC staff members (n = 8) in 7 other states. The results of a directed content analysis revealed perceived declines in physical, cognitive, and mental health of ADC users and increased caregiver strain. Access to human, social, economic, and political capital were essential for supporting ADCs in buffering the impacts of the pandemic on the older adults they serve but were not consistently available. Research is urgently needed that quantifies the impacts of the pandemic on ADC users and their caregivers to inform policy and advocacy efforts in the wake of the pandemic.

Last updated on hub: 19 May 2021

The potential dangers of not understanding COVID-19 public health restrictions in dementia: “It’s a groundhog day – every single day she does not understand why she can’t go out for a walk”

BMC Public Health

Background: Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD). Methods: Unpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media. Findings: A total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these. Discussion: In light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia.

Last updated on hub: 19 May 2021

Navigating the new normal: accessing community and institutionalised care for dementia during COVID-19

Aging and Mental Health

Objectives: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. Method: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. Results: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. Conclusions: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support.

Last updated on hub: 10 May 2021

Living at home with dementia now more complicated with COVID-19

Health and Social Work

Social workers are playing key roles in dementia care around the world and have become critical components of interprofessional teams a need that is accelerating in the era of COVID-19. This article explores key aspects of social work dementia care pre-COVID-19; dementia dilemmas for social workers; lessons learned during the pandemic; and implications for social work practice. The paper observes that contemporary essential social work competencies for dementia care include: knowledge of ethical and appropriate care for the individual experiencing the disease; ability to provide individual and group support for caregivers; knowledge of stages of dementia of all types; competence in assisting families to prepare with advance directives; understanding of behavioural and environmental interventions to diffuse agitated behaviours; awareness of local resources for caregiving respite, support, and health, including those available through telehealth and other virtual and emerging modalities; familiarly with levels of care, payment models, and state and national financial regulations for payment.

Last updated on hub: 19 April 2021

The impact of COVID‐19 pandemic on people with mild cognitive impairment/dementia and on their caregivers

International Journal of Geriatric Psychiatry

Background: The novel coronavirus disease (COVID‐19) was first detected in Mainland China in December 2019, and soon it spread throughout the world, with multiple physical and psychological consequences across the affected populations. Aims: The aim of the current study was to analyze the impact of COVID‐19 pandemic on older adults with mild cognitive impairment (MCI)/dementia and their caregivers as well. Materials and Methods: Two hundred and four caregivers took part in the study, completing a self‐reported questionnaire about the person with MCI/dementia and their own, since the lockdown period which started in February and ended in May of 2020 in Greece. Results: Results indicated a significant overall decline of the people with MCI/dementia. Further, the domains in which people with MCI/dementia were mostly affected were: communication, mood, movement and compliance with the new measures. Caregivers also reported a great increase in their psychological and physical burden during this period, where the available support sources were limited. Discussion: The pandemic threatens to disrupt the basic routines that promote mental and physical health of both people with MCI/dementia and t heir caregivers. Conclusion: Further measures to protect and provide support to people who suffer and their families are needed.

Last updated on hub: 13 April 2021

Dementia and the risk of death in elderly patients with COVID‐19 infection: systematic review and meta‐analysis

International Journal of Geriatric Psychiatry

Objectives: The COVID‐19 infection represents a global public health emergency worldwide. Several risk factors have been associated with a poor prognosis among COVID‐19 patients. We aimed to perform a systemic review and meta‐analysis to evaluate the mortality risk in elderly patients with dementia and COVID‐19 infection. Methods: Literature search was based on Cochrane Library, Embase, PubMed, and Google Scholar to locate articles published between December 2019 and July 2020, presenting the number of survived versus deceased patients with dementia and COVID‐19 infection. Results: A total of 233 articles were retrieved: 158 were excluded for not meeting the inclusion criteria, leaving 75 articles to assess for eligibility. After evaluation of the full‐text articles, eight met the inclusion criteria and were thus included into the final analysis (6493 patients – mean age: 69.6 years). Among COVID‐19 patients, the prevalence of dementia was higher in non‐survivors compared with survivors (17.5% vs. 5.4%, p < 0.001). The pooled analysis performed using a random‐effect model showed an increase in the risk of death in COVID‐19 patients with dementia (odds ratio: 3.75; 95% confidence interval: 2.54–5.54, p < 0.0001, I 2 = 49.5%). The Egger's regression test confirmed that there were not statistically evidences of publication bias (t = 0.059; p = 0.954). Conclusions: Our preliminary results suggest that patients with COVID‐19 infection and dementia have a higher mortality risk in the short‐term period compared with infected non‐demented individuals. Due to their intrinsic frailty, dementia patients may require a more aggressive treatment and prompt isolation to improve their short‐term outcome.

Last updated on hub: 08 April 2021

Factors associated with SARS-CoV-2 infection and outbreaks in long-term care facilities in England: a national cross-sectional survey

Lancet Healthy Longevity

Background: Outbreaks of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection have occurred in long-term care facilities (LTCFs) worldwide, but the reasons why some facilities are particularly vulnerable to outbreaks are poorly understood. This study aimed to identify factors associated with SARS-CoV-2 infection and outbreaks among staff and residents in LTCFs. Methods: This study did a national cross-sectional survey of all LTCFs providing dementia care or care to adults aged 65 years or older in England between May 26 and June 19, 2020. The survey collected data from managers of eligible LTCFs on LTCF characteristics, staffing factors, the use of disease control measures, and the number of confirmed cases of infection among staff and residents in each LTCF. Survey responses were linked to individual-level SARS-CoV-2 RT-PCR test results obtained through the national testing programme in England between April 30 and June 13, 2020. The primary outcome was the weighted period prevalence of confirmed SARS-CoV-2 infections in residents and staff reported via the survey. Multivariable logistic regression models were fitted to identify factors associated with infection in staff and residents, an outbreak (defined as at least one case of SARS-CoV-2 infection in a resident or staff member), and a large outbreak (defined as LTCFs with more than a third of the total number of residents and staff combined testing positive, or with >20 residents and staff combined testing positive) using data from the survey and from the linked survey–test dataset. Findings: 9081 eligible wLTCFs were identified, of which 5126 (56·4%) participated in the survey, providing data on 160 033 residents and 248 594 staff members. The weighted period prevalence of infection was 10·5% (95% CI 9·9–11·1) in residents and 3·8% (3·4–4·2) in staff members. 2724 (53·1%) LTCFs reported outbreaks, and 469 (9·1%) LTCFs reported large outbreaks. The odds of SARS-CoV-2 infection in residents (adjusted odds ratio [aOR] 0·80 [95% CI 0·75–0·86], p<0·0001) and staff (0·70 [0·65–0·77], p<0·0001), and of large outbreaks (0·59 [0·38–0·93], p=0·024) were significantly lower in LTCFs that paid staff statutory sick pay compared with those that did not. Each one unit increase in the staff-to-bed ratio was associated with a reduced odds of infection in residents (0·82 [0·78–0·87], p<0·0001) and staff (0·63 [0·59–0·68], p<0·0001. The odds of infection in residents (1·30 [1·23–1·37], p<0·0001) and staff (1·20 [1·13–1·29], p<0·0001), and of outbreaks (2·56 [1·94–3·49], p<0·0001) were significantly higher in LTCFs in which staff often or always cared for both infected or uninfected residents compared with those that cohorted staff with either infected or uninfected residents. Significantly increased odds of infection in residents (1·01 [1·01–1·01], p<0·0001) and staff (1·00 [1·00–1·01], p=0·0005), and of outbreaks (1·08 [1·05–1·10], p<0·0001) were associated with each one unit increase in the number of new admissions to the LTCF relative to baseline (March 1, 2020). The odds of infection in residents (1·19 [1·12–1·26], p<0·0001) and staff (1·19 [1·10–1·29], p<0·0001), and of large outbreaks (1·65 [1·07–2·54], p=0·024) were significantly higher in LTCFs that were for profit versus those that were not for profit. Frequent employment of agency nurses or carers was associated with a significantly increased odds of infection in residents (aOR 1·65 [1·56–1·74], p<0·0001) and staff (1·85 [1·72–1·98], p<0·0001), and of outbreaks (2·33 [1·72–3·16], p<0·0001) and large outbreaks (2·42 [1·67–3·51], p<0·0001) compared with no employment of agency nurses or carers. Compared with LTCFs that did not report difficulties in isolating residents, those that did had significantly higher odds of infection in residents (1·33 [1·28–1·38], p<0·0001) and staff (1·48 [1·41–1·56], p<0·0001), and of outbreaks (1·84 [1·48–2·30], p<0·0001) and large outbreaks (1·62 [1·24–2·11], p=0·0004). Interpretation: Half of LTCFs had no cases of SARS-CoV-2 infection in the first wave of the pandemic. Reduced transmission from staff is associated with adequate sick pay, minimal use of agency staff, an increased staff-to-bed ratio, and staff cohorting with either infected or uninfected residents. Increased transmission from residents is associated with an increased number of new admissions to the facility and poor compliance with isolation procedures.

Last updated on hub: 31 March 2021

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