COVID-19 resources on Dementia

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Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic

BMC Geriatrics

Background: COVID-19 restrictions in nursing homes resulted in a reduction in stimuli for residents. This study aimed to explore observed effects of changes in stimuli, both targeted (e.g., planned recreational activities) and untargeted (e.g., spontaneous noise), on challenging behavior in nursing home residents during COVID-19 anti-pandemic measures. Methods: In an online survey, nursing home healthcare professionals in the Netherlands provided their perspectives on the effects of the reduction in untargeted stimuli on residents with mild, advanced, or no dementia, and on different types of challenging behavior (i.e., psychotic, depressed, anxious, agitated, or apathetic behavior). Additionally, we asked participants’ opinions about strategies for limiting untargeted stimuli and for adjusting targeted stimuli for optimal management of challenging behaviours. Results: In total, 199 professionals completed the survey. Residents with advanced dementia and those with psychotic and agitated behavior seemed to benefit from the reductions in stimuli not specifically targeted at the resident. In contrast, residents without dementia and those with depressive and apathetic behavior seemed to be negatively affected by reductions in untargeted stimuli. Participants would like to continue reducing untargeted stimuli in the future (e.g., limiting the use of corridors adjacent to residents' rooms) and to adapt existing or introduce new initiatives involving targeted stimuli (e.g., small-scale, individually tailored activities). Responses to open-ended questions revealed additional initiatives that could be useful in nursing home care. Conclusions: This study provided lessons to learn from the COVID-19 measures in nursing homes. While many residents may have been negatively affected by the restrictions imposed during the pandemic, specific resident groups may have benefitted from the reduction in untargeted stimuli and from the adjustments made to daily activities. Various strategies and initiatives used in nursing homes during the pandemic seem promising for meeting individual needs in managing challenging behavior. These findings suggest that certain stimuli may affect specific resident groups differently. This underlines the importance of finding the right balance between stimuli and tranquillity, tailored to the needs of individual residents. It is important to consider the stimuli present in nursing homes, whether targeted or untargeted, when analysing and treating challenging behavior.

Last updated on hub: 21 April 2022

Working in a care home during the COVID-19 pandemic: How has the pandemic changed working practices? A qualitative study

BMC Geriatrics

Background: The pandemic has significantly affected care homes’ residents and families through the national visiting restrictions. However, less is known on the impact these changes have had on the care home workforce. The aim of this research was to explore the impact of COVID-19 on the working practices of care home staff, caring for people living with dementia. Methods: Remote qualitative, semi-structured interviews were conducted with care home staff caring for people living with dementia (PLWD) in the UK. Results: Participants were recruited to the larger programme of research via convenience sampling. Interviews were conducted via telephone or online platforms. This research employed inductive thematic analysis. Sixteen care home staff were included in this study. Three overarching themes were developed from the analysis that conveyed changes to the everyday working practices of the care home workforce and the impact such changes posed to staff wellbeing: (1) Practical implications of working in a care home during the COVID-19 pandemic; (2); Staff values and changes to the staff roles (3): Impact to the care home staff and concerns for the care sector. Conclusions: The COVID-19 pandemic has significantly disrupted the daily working practices of care home staff, with staff forced to adopt additional roles on top of increased workloads to compensate for the loss of external agencies and support. Support and guidance must be offered urgently to inform care home staff on how to best adapt to their new working practices, ensuring that they are adequately trained.

Last updated on hub: 21 April 2022

Trust and inclusion during the Covid-19 pandemic: perspectives from Black and South Asian people living with dementia and their carers in the UK

International Journal of Geriatric Psychiatry

Introduction: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid-19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid-19 on Black and South-Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model. Method: Semi-structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data. Design: An exploratory qualiative design was used. Results: Four main themes were developed exploring trust at the structural, organisational, community and individual level. At the structural level, participants discussed the inequity of Covid-19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person-centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the individual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic. Conclusions: People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms may influence help-seeking responses to dementia and increase trust in services may be helpful post-pandemic.

Last updated on hub: 31 March 2022

Impact of COVID‐19 on carers of people with dementia in the community: findings from the British IDEAL cohort

International Journal of Geriatric Psychiatry

Objective: Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. This study sought to explore the impact of the COVID-19 pandemic on carers for community-dwelling people with dementia and compare responses with pre-pandemic data. Methods: Data were collected between September 2020 and April 2021 in England and Wales. Carers were identified from the IDEAL cohort and data were collected either through the telephone, video conferencing, or an online questionnaire. Responses from 242 carers were compared against benchmark data from the IDEAL cohort collected pre-pandemic. Analyses were conducted for the full sample of carers and spousal/partner carers only. Results: In total 48.8% of carers thought their healthcare needs were negatively affected during the pandemic. Compared with pre-pandemic data carers were more lonely and experienced less life satisfaction. There was little impact on carers’ experience of caregiving, although carers felt trapped in their caregiving role. Carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Most carers coped very or fairly well during the pandemic. There was little difference in the experiences of spousal/partner carers and the full sample. Conclusions: After a long period of providing care under pandemic conditions carers require additional support. This support needs to be focused on alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care, particularly resuming face-to-face appointments.

Last updated on hub: 28 March 2022

Exploring the impact of Covid-19 on the care and quality of life of people with dementia and their carers: a scoping review

Dementia: the International Journal of Social Research and Practice

This article reports on findings of a scoping review aimed to map the published literature concerning the impact of Covid-19 on the care and quality of life of people living with dementia and their carers. Twenty-nine articles were included in the review. Three overarching themes were identified: (1) Impact on people with dementia – unmet and increased care needs; (2) Impact on carers – increased stress and burden and (3) Impact according to demographics. Overall, findings show that Covid-19 has led to a reduction in support from health and social services and to a move towards technology-based support. Furthermore, Covid-19 has had a negative impact on the care and quality of life of people living with dementia and their carers, and that this impact was influenced by the severity of dementia.

Last updated on hub: 14 March 2022

Exploring resilience and well-being of family caregivers of people with dementia exposed to mandatory social isolation by COVID-19

Dementia: the International Journal of Social Research and Practice

Background: The COVID-19 pandemic has raised questions about the resilience of health care systems worldwide. In this regard, one group of people whose physical and mental health has been affected has been family caregivers of people with dementia. Objective: This study aims to identify the variables that predict a high degree of well-being in family caregivers of people with dementia during this period of mandatory lockdown. Methods: A total of 310 respondents participated in an online survey (266 women and 44 men) from various regions in Spain, aged between 20 and 73 years old (M = 46.45; SD = 15.97), and all were family members. Results: The results showed that there were notable differences in all the protective variables, together with a significant strong positive relationship between well-being and resilience (r = 0.92; p < 0.01) and with coping strategies (r = 0.85; p < 0.01), and there were also some significant negative relationships between well-being and difficulties in emotional regulation (ρ = −.78; p < 0.01). The most predictive variables of a higher level of well-being included the type of dementia (β = 1.19; CI (95%) = 1.01-1.29; p< 0.01), living in a large house (β = 0.97; CI (95%) =. 23-0.98; p < 0.01), social support as a coping strategy (β = 1.27; CI (95%) = 1.21-1.29; p < 0.01) and mainly resilience (β = 1.34; CI (95%) = 1.30-1.37; p < 0.01). Discussion: this paper discusses the importance of promoting higher levels of resilience through the development of protective psychosocial variables in caregivers of people with dementia exposed to situations of mandatory social isolation as a modulator of the psychosocial well-being of these family caregivers.

Last updated on hub: 14 March 2022

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

BMC Geriatrics

Background: People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. Methods: We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: (1) unfamiliar with, (2) familiar with, and (3) users of the DIT. Results:61% of respondents identified distress of LTCH staff about the harmful effects of isolation on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident’s room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. Conclusions: Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff.

Last updated on hub: 09 March 2022

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS-professional dementia training intervention for homecare workers during the Covid-19 pandemic

Health and Social Care in the Community

Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co-designed, 6-session dementia training intervention for homecare workers (NIDUS-professional) was acceptable and feasible. Facilitated training sessions were delivered over 3 months, followed by 3, monthly implementation meetings to embed changes in practice. Two trained and supervised facilitators without clinical qualifications delivered the intervention via group video-calls during Oct 2020–March 2021 to a group of seven homecare workers from one agency in England. Participants provided qualitative feedback 3- and 6-months post intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Adherence to the intervention and fidelity of delivery were high, indicating that it was acceptable and feasible to deliver in practice. Thirty of a possible 42 (71.4%) group sessions were attended. This thematic analysis reports one over-arching theme: ‘Having time and space to reflect is a rare opportunity’. Within this, this study identified four subthemes (Having time to reflect is a rare opportunity; Reflecting with peers enhances learning; Reflection and perspective taking can improve care; Recognising skills and building confidence) through which this study explored how participants valued the intervention to discuss their work and learn new skills. Attendance was lower for the implementation sessions, perhaps reflecting participants’ lack of clarity about their purpose. The findings were used to consider how we can maintain positive impacts of the manualised sessions, so that these are translated into tangible, scalable benefits for people living with dementia and the homecare workforce. A randomised feasibility trial is underway.

Last updated on hub: 07 March 2022

“Because if I don’t hold his hand then I might as well not be there”: experiences of Dutch and UK care home visiting during the COVID-19 pandemic

International Psychogeriatrics

Objectives:: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design: Qualitative semi-structured interview studies. Setting and Participants: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analysed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.

Last updated on hub: 07 March 2022

Feasibility of a culturally tailored dementia information program for minority ethnic communities in Denmark

International Journal of Geriatric Psychiatry

Objectives: Proactive efforts that take language and cultural barriers into consideration may be needed to raise awareness of dementia and improve access to services in minority ethnic communities. The aim of this study was to assess the feasibility of a culturally tailored dementia information program and the immediate effects on participants' intention to seek help for memory problems, their knowledge and beliefs about dementia, and their knowledge about options for support. Methods: A novel dementia information program, consisting of one 2-h session, was developed through a collaborative research process with primary care dementia coordinators and multicultural link workers as co-researchers. It provides basic knowledge about dementia to minority ethnic communities and can be delivered in a community setting by non-specialists. Results: Six information program sessions were conducted with a total of 110 participants; 65 Turkish, 19 Pakistani, 20 Arabic-speaking, and 6 with another minority ethnic heritage. The program had a significant effect on participants' immediate knowledge and beliefs about dementia as measured with a quiz (z = −2.02, p = 0.04, d = 0.90). In a post-program focus group meeting, facilitating multicultural link workers reported satisfaction with facilitator training, adopted recruitment strategies, and content and delivery of the information sessions and provided feedback on improving the program. Conclusions: The results provide support for the feasibility of the culturally tailored dementia information program. The program has the potential to improve knowledge and beliefs about dementia and options for formal support in minority ethnic communities and seems easily implemented in existing services, and at a low cost.

Last updated on hub: 10 February 2022

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