COVID-19 resources on Dementia

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Social care-related quality of life of people with dementia and their carers in England

Health and Social Care in the Community

People with dementia and their carers are a growing subgroup of people who use community-based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care-related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy-report when someone is unable to self-report. The ASCOT-Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy-reported by carers) and their carers. Data were collected via a self-administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self-complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. The researchers recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self- and proxy-report. Key influences on carers’ own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic-related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.

Last updated on hub: 20 December 2021

Living with dementia during the COVID-19 pandemic: coping and support needs of community-dwelling people with dementia and their family carers. Research findings from the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI)

University of York

This report sets out findings from the IDEAL COVID-19 Dementia Initiative (IDEAL CDI), which was established to identify concerns and issues faced by people living with dementia and their carers as a result of the coronavirus epidemic and the strict social restrictions imposed in England between March and June 2020. The report is based on interviews with people with dementia and carers from the IDEAL cohort. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties. For many, social isolation increased anxiety. Some felt that lack of activity or lack of social contact caused a decline in their abilities to manage everyday tasks. Confusion about COVID-19 rules or difficulty remembering what to do led to anxiety when leaving the house. People felt that members of the public might not understand their particular needs. While some carers felt they were coping well, others experienced stress when having to leave the home because the person with dementia might not be safe if left alone. Some experienced increased strain in the caring relationship compounded by an uncertainty about future availability of respite. Some were concerned about the complex health needs of the person with dementia alongside COVID-19 risk and lack of personalised information. Both people with dementia and carers talked about the importance of access to safe outdoor space. People were anxious about how others would react or behave towards them regarding keeping a distance if they went out. Being connected to friends, family and wider community or support groups was important to help combat the effects of isolation. People from BAME communities worried about their increased vulnerability to the virus. A lack of trust in Government guidance and in health care services added to their anxiety. However, some benefitted from strong community and faith group involvement.

Last updated on hub: 07 December 2021

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

BMC Geriatrics

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

Last updated on hub: 19 November 2021

Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation

BMC Geriatrics

Background: Restrictions introduced in response to the COVID-19 pandemic led to increased risk of deconditioning in the general population. No empirical evidence of this effect however has been gathered in people living with dementia. This study aims to identify the causes and effects of COVID-19-related deconditioning in people living with dementia. Methods: This is a longitudinal phenomenological qualitative study. Participants living with dementia, their caregivers and therapists involved in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation during the COVID-19 pandemic were qualitatively interviewed at two time points: the baseline 2 months after the national lockdown was imposed in England (i.e., May 2020), the follow up 2 months after the first set (i.e. July 2020). The data were analysed through deductive thematic analysis. Results: Twenty-four participants living with dementia, 19 caregivers and 15 therapists took part in the study. Two themes were identified: Causes of deconditioning in people living with dementia during the COVID-19 pandemic and effects of deconditioning in people living with dementia during the COVID-19 pandemic. A self-reinforcing pattern was common, whereby lockdown made the person apathetic, demotivated, socially disengaged, and frailer. This reduced activity levels, which in turn reinforced the effects of deconditioning over time. Without external supporters, most participants lacked the motivation / cognitive abilities to keep active. Provided the proper infrastructure and support, some participants could use tele-rehabilitation to combat deconditioning. Conclusion: The added risks and effects of deconditioning on people with dementia require considerable efforts from policy makers and clinicians to ensure that they initiate and maintain physical activity in prolonged periods of social distancing. Delivering rehabilitation in the same way as before the pandemic might not be feasible or sustainable and innovative approaches must be found. Digital support for this population has shown promising results but remains a challenge.

Last updated on hub: 19 November 2021

Involvement, worries and loneliness of family caregivers of people with dementia during the COVID-19 visitor ban in long-term care facilities

Geriatric Nursing

To prevent COVID-19 from spreading in long-term care facilities (LTCFs), the Dutch government took restrictive measures, including a visitor-ban in LTCFs. This study examined the relationship between involvement of family caregivers (FCs) of people with dementia (PwD) living in LTCFs and FCs mental health during the visitor-ban, and whether this relationship was moderated by the frequency of alternative contact with PwD during the visitor-ban and FC resilience. This cross-sectional study collected data from 958 FCs. FCs who visited PwD more frequently before, were more worried during the visitor-ban than those with lower visiting frequency. FCs who visited the PwD daily before, but had minimal weekly contact during the visitor-ban, worried less. Resilient FCs who did social and task-related activities before, experienced less loneliness during the visitor-ban. It is advisable for healthcare professionals to reach out to these groups, to facilitate ongoing contact and help them overcome their loneliness.

Last updated on hub: 29 October 2021

A piece of paper is not the same as having someone to talk to”: accessing post-diagnostic dementia care before and since COVID-10 and associated inequalities

International Journal for Equity in Health

Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

Last updated on hub: 29 October 2021

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

BMC Health Services Research

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. This study aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, this study focussed on key concerns and areas of decision making at the end of life. Methods: This study conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May-June 2020. Results: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

Last updated on hub: 23 September 2021

Resilience and supporting people living with dementia during the time of COVID-19: a qualitative study

Dementia: the International Journal of Social Research and Practice

Objectives: To explore the different factors of resilience for people living with dementia and unpaid carers, in response to sudden changes in care and lifestyle during the COVID-19 pandemic. Methods: Unpaid carers and people living with dementia were offered telephone interviews in April 2020 to discuss their experiences since the COVID-19 pandemic. Participants were asked about the benefits and challenges of accessing dementia support, as well as coping, symptoms, strategies and impacts. Each transcript was analysed using inductive and deductive thematic analysis by two researchers. Findings: Semi-structured interviews from 50 participants (n = 42 unpaid carers and n = 8 people living with dementia) reported protective and risk factors of resilience concerning (1) communication, (2) adaptations, (3) support networks and (4) lifestyle factors and coping mechanisms. Conclusions: Resilience factors considered both organisational factors for external support, along with individual coping mechanisms. Organisations and social support services should consider resilience factors in future service planning, to better support people living with dementia, or caring someone living with dementia, during times of great stress. The ecological model of resilience established from this research refers to resilience during times of unexpected change in the COVID-19 pandemic; however, it could be considered relevant in other periods of high stress within this cohort.

Last updated on hub: 02 September 2021

Understanding the impact of the COVID-19 pandemic on well-being and virtual care for people living with dementia and care partners living in the community

Dementia: the International Journal of Social Research and Practice

The COVID-19 pandemic has necessitated public health measures that have impacted the provision of care for people living with dementia and their families. Additionally, the isolation that results from social distancing may be harming well-being for families as formal and informal supports become less accessible. For those living with dementia and experiencing agitation, social distancing may be even harder to maintain, or social distancing could potentially aggravate dementia-related neuropsychiatric symptoms. To understand the lived experience of social and physical distancing during the COVID-19 pandemic in Canada, we remotely interviewed 21 participants who normally attend a dementia specialty clinic in Calgary, Alberta, during a period where essential businesses were closed and health care had abruptly transitioned to telemedicine. A reflexive thematic analysis was used to analyze the interview and field note data. The impacts of the public health measures in response to the pandemic emerged through iterative analysis in three main categories of experience: (1) personal, (2) health services, and (3) health status (of both persons living with dementia and care partner). Isolation and mental health needs emerged as important impacts to family experiences. This in-depth understanding of the needs and experiences of the pandemic for people living with dementia suggests that innovative means are urgently needed to facilitate provision of remote medicine and also social interaction and integration.

Last updated on hub: 24 August 2021

Living through the pandemic: the voices of persons with dementia and their caregivers

Journal of Applied Gerontology

Social-distancing guidelines from the COVID-19 pandemic have potential to compound morbidity in persons with dementia (PwD) and increase caregiver burden. This qualitative study utilized semi-structured interviews between August-November 2020 to explore the impact of COVID-19 on PwD and caregivers. Conventional qualitative content analysis was used. Inter-coder reliability was confirmed using the kappa coefficient. Twenty-five interviews were completed with four themes emerging: disruption of socialization, fear and risk mitigation, coping strategies, and caregiver burden. Participants described how lack of socialization and confinement led to feelings of loneliness, depression, and worsening memory problems. Caregivers reported increased burden and heightened feelings of responsibility for their loved one. Increased isolation imposed by the pandemic has a detrimental impact on PwD. Further work is needed to develop interventions to support PwD and other cognitive impairments and caregivers during the pandemic and when in-person socialization is not possible.

Last updated on hub: 18 August 2021

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