The story of an emerging crisis: the impact of COVID-19 on care home residents with dementia in the UK

2021 ◽  
Vol 5 (4) ◽  
pp. 709-715
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening
Keyword(s):  
Care Home ◽  
Care Homes ◽  
Government Accountability ◽  
People With Dementia ◽  
High Death ◽  
The Media ◽  
Care Practices ◽  
The Uk ◽  
The Impact ◽  
Bear Witness

The impact of COVID-19 in UK care homes has been significant ‐ for staff, residents and people with dementia. Given the rapidly changing circumstances, the media (limitations notwithstanding) have reported vital insights from the front line. A qualitative analysis of news articles across three time points reveals the story of an emerging crisis in UK care homes, beginning with a sole focus on hospital care and resulting in tragically high death rates. This public-facing narrative has potential to: advocate for increased resources in care homes; drive government accountability; highlight improvements for care practices; and bear witness to the experiences of a vulnerable population.

scholarly journals Living in a care home during COVID-19: a case study of one person living with dementia

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Ian Davies-Abbott ◽  
Catrin Hedd Jones ◽  
Gill Windle
Keyword(s):  
Study Design ◽  
Single Case ◽  
Care Home ◽  
Care Homes ◽  
Single Case Study ◽  
Content Type ◽  
Case Study Design ◽  
People With Dementia ◽  
The Impact

Purpose This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown. Findings Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant’s ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation. Research limitations/implications The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies. Practical implications Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity. Originality/value Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia.

scholarly journals Are we allowed to visit now? Concerns and issues surrounding vaccination and infection risks in UK care homes during COVID-19

2021 ◽  
Author(s):  
Clarissa Marie Giebel ◽  
Kerry Hanna ◽  
Jacqueline Cannon ◽  
Paul Marlow ◽  
Hilary Tetlow ◽  
...  
Keyword(s):  
Scientific Evidence ◽  
Care Home ◽  
Home Visitation ◽  
Control Measures ◽  
Care Homes ◽  
Family Carers ◽  
Care Home Staff ◽  
The Uk ◽  
The Impact

Background: Vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. Methods: Family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. Results: Across 62 baseline and follow-up interviews with family carers (n=26; 11) and care home staff (n=16; 9), five core themes were developed: Delayed and inconsistent offers of face-to-face visits; Procedures and facilitation of visits; Frustration and anger among family carers; Variable uptake of the COVID-19 vaccine; Misinformation, education, and free choice. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. Conclusions: We make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

scholarly journals 201 - Care Home Residents as Artists: Digital Connections in the age of Disconnect.

2021 ◽  
Vol 33 (S1) ◽  
pp. 6-7
Author(s):  
Nicola Abraham ◽  
Rachel Hudspith
Keyword(s):  
Older Adults ◽  
New Technologies ◽  
Housing Association ◽  
Care Home ◽  
Care Homes ◽  
News Reports ◽  
Global Pandemic ◽  
Failure To Protect ◽  
The Uk ◽  
The Impact

AbstractThroughout the current global pandemic, many people have had to adapt to new ways of interacting through virtual platforms. For those with access to new technologies this transition has been straightforward, but not easy and for those without it, life has become socially isolating, frightening, and lonely. The impact of COVID-19 on the mental health of older adults is a serious concern, particularly for those living in care homes who have been forgotten or neglected by exclusionary government policy. Amnesty International’s 2020 report As if Expendable: The UK Government’s Failure to Protect Older People in Care Homes During the COVID-19 Pandemic provides analysis of the neglect to care and sufficiently support older adults living with dementia in supported living. The results of this inaction to provide care has led to many avoidable deaths, and caused fear and heartache for those who have lost family, friends and colleagues. It is at this moment, during the third UK lockdown that we would like to share a narrative of hope about the actions that we have taken within care home contexts to provide relief, reconnect residents safely with their neighbours, and found creative ways to inclusively provide care, support and celebrations of the identities of people in these contexts who have become statistics in news reports.Between January and March 2021, undergraduate and postgraduate Applied Theatre students from The Royal Central School of Speech and Drama in partnership with Imperial College Healthcare NHS Trust collaborated with residents from One Housing Association to create and develop bespoke films, poems, songs and virtual reality 360 videos from the safety of their homes to bring to life their stories, hopes and inner artists. In this presentation, we will explore the impact of these projects on the participants’ wellbeing and examine the importance of providing older adults opportunities to be creative. We will additionally offer insights into the relationships that were made and developed during the projects, including family connections, intergenerational connections and playful relationships that emerged between the residents themselves and their Carers.

scholarly journals Remembering the past, enhancing the present and sharing the future: a qualitative study of the impact of film screenings in care home communities

2020 ◽  
pp. 1-26
Author(s):  
Jenna P. Breckenridge ◽  
Thilo Kroll ◽  
Gavin Wylie ◽  
Ana Salzberg
Keyword(s):  
Qualitative Study ◽  
Care Home ◽  
Social Activity ◽  
Care Homes ◽  
Social Connection ◽  
Emotional Wellbeing ◽  
Care Home Staff ◽  
People With Dementia ◽  
The Rich ◽  
The Impact

Abstract Many care home residents lack opportunities for meaningful activity and social connection, resulting in poor physical and emotional wellbeing. Providing residents with varied activities and social opportunities can improve their quality of life. In this paper, we examine the potential for film to provide a meaningful, social activity. The limited existing research on film in care homes has predominantly examined the use of film clips and materials in stimulating reminiscence for people with dementia. In this paper, we adopt a broader, trans-disciplinary perspective of film, drawing on evidence from Film Studies that shared spectatorship has social and emotional benefits for the viewer. We offer the first qualitative study of care home residents’ social, emotional and embodied engagement with feature-length film and identify the key benefits of film in this setting. We ran social film screenings in two Scottish care homes over six weeks. Underpinned by psycho-cinematic theory, we collected and analysed observational data alongside interviews with care home staff and discussion groups with residents. Our findings identified three ways in which film screenings benefit residents and supports social connection: prompting reminiscence; enhancing residents’ experiences in the present; and creating a shared future and intergenerational connections. The paper offers useful insights into the rich potential for film to enhance the care home community, facilitate social connectivity and promote resident wellbeing.

scholarly journals COVID-19 in aged care homes: a comparison of effects initial government policies had in the UK (primarily focussing on England) and Australia during the first wave

2021 ◽  
Vol 33 (1) ◽  
Author(s):  
Daniel Kam Yin Chan ◽  
Mary-Louise Mclaws ◽  
Duncan Ronald Forsyth
Keyword(s):  
Aged Care ◽  
Government Policies ◽  
Care Homes ◽  
Protective Equipment ◽  
The Public ◽  
Lower Priority ◽  
High Death ◽  
Viral Testing ◽  
The Uk ◽  
The Impact

Abstract Background COVID-19 pandemic has had a major impact globally, with older people living in aged care homes suffering high death rates. Objectives We aimed to compare the impact of initial government policies on this vulnerable older population between the UK and Australia during the first wave of attack. Methods We searched websites of governments in the UK and Australia and media outlets. We examined the key policies including the national lockdown dates and the distribution of some important resources (personal protective equipment and testing) and the effects of these initial policies on the mortality rates in the aged care homes during the first wave of attack of COVID-19. Results We found that both countries had prioritized resources to hospitals over aged care homes during the first wave of attack. Both countries had lower priority for aged care residents in hospitals (e.g. discharging without testing for COVID-19 or discouraging admissions). However, deaths in aged care homes were 270 times higher in the UK than in Australia as on 7 May 2020 (despite UK having a population only 2.5 times larger than Australia). The lower fatality rate in Australia may have been due to the earlier lockdown strategy when the total daily cases were low in Australia (118) compared to the UK (over 1000), as well as the better community viral testing regime in Australia. Conclusion In conclusion, the public health policy in Australia aimed towards earlier intervention with earlier national lockdown and more viral testing to prevent new cases. This primary prevention could have resulted in more lives being saved. In contrast, the initial policy in the UK focussed mainly on protecting resources for hospitals, and there was a delay in national lockdown intervention and lower viral testing rate, resulting in more lives lost in the aged care sector.

scholarly journals 210 - Are visits allowed? The impact of the COVID-19 pandemic on care home visitation and care delivery in the UK

2021 ◽  
Vol 33 (S1) ◽  
pp. 12-13
Author(s):  
Clarissa Giebel ◽  
Kerry Hanna ◽  
Jacqueline Cannon ◽  
Hilary Tetlow ◽  
Paul Marlow ◽  
...  
Keyword(s):  
Research Team ◽  
Care Delivery ◽  
Care Home ◽  
Family Members ◽  
Care Homes ◽  
Family Carers ◽  
Care Home Staff ◽  
The Uk ◽  
The Impact

Background:COVID-19 has caused the sudden closure of care homes to the outside world, to stem the virus from infecting some of the most vulnerable groups of people – older adults residing in care homes. With very little knowledge to date, we aimed to explore the impact of COVID-19 on care provision and visits in care homes from staff and family members’ perspectives.Methods:Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or Zoom. Participants took part in a semi-structured remote interview. Baseline data were collected between October and November 2020, and follow-up interviews were collected throughout March 2021. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input.Results:42 participants (26 family carers and 16 care home staff) took part in the baseline interviews, and 20 purposefully sampled participants (11 family carers and 9 care home staff) were followed up. Prior to vaccination roll out in the UK, at baseline, family carers expressed concern about a lack of clear guidance throughout the pandemic, with care homes delivering care differently and disparities noted in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well-being of their relative. Data on follow-up interviews are still being analysed.Conclusions:This is the first empirical evidence to show how the pandemic has caused severe difficulties in providing adequate care for care home residents, with not only residents, but also care home staff and family carers being negatively affected. Follow-up data will shed light onto the impact of vaccination and eased visitation rights put in place since March 2021 on care delivery and connections between family carers and residents.

The experiences of Indian migrant care home staff working with people with dementia: a pilot study exploring cultural perspectives

2016 ◽  
Vol 20 (1) ◽  
pp. 3-13 ◽  
Author(s):  
Brandon Ow Yong ◽  
Jill Manthorpe
Keyword(s):  
Pilot Study ◽  
Social Care ◽  
Care Home ◽  
Care Homes ◽  
Term Care ◽  
Content Type ◽  
People With Dementia ◽  
Care Workers ◽  
The Social ◽  
The Uk

Purpose – Little is known about migrant Indian care workers working in long-term care facilities for people with dementia in England and the purpose of this paper is to remedy this lack of information in the light of political interest in immigration to the UK and continued staff shortages in parts of the social care sector. Design/methodology/approach – This pilot study investigated the experiences of workplace acculturation among 12 migrant Indian care workers who were employed in English care homes. Qualitative face-to-face interviews were conducted in 2013. Analysis of the interviews was conducted using principles of interpretative phenomenological analysis. Findings – Following analysis five themes emerged along an acculturation timeline. First, during the first six months of their employment, the migrant care workers recalled feeling vulnerable, seemingly marked by a sense of insecurity and an overwhelming state of cognitive burden within an unfamiliar cultural context. Second, simultaneously, the migrants felt perturbed about their new role as direct care workers. Third, few had been able to draw on their networks of friends and relatives to build up knowledge of their new work environments before starting care home employment. Fourth, two years into the work, although they reported feeling better adapted, psychological and socio-cultural adjustments were still thought to be needed. Fifth, most participants retained their ambition to be recognised as a qualified nurse in the UK and to pursue a nursing career outside the social care sector. Research limitations/implications – This is a pilot study in which 12 migrant Indian care home workers were interviewed. Further interviews might provide a greater range of views and experiences. The care homes that participated in this research were in the London region where staff shortages are common in dementia services such as care homes. Practical implications – The findings suggest a need for employers and human resource managers to respond to the specific needs of Indian and other migrants working with older people who are resident in care homes. Such responses should reflect the timeline of their acculturation and employers need also to acknowledge and address aspirations to move on to NHS work. Originality/value – This study is unique to the best of the authors’ knowledge in addressing Indian care workers specifically as a substantial part of the migrant care workforce in the UK. It offers information about their perceptions and suggests practical human response and managerial initiatives.

scholarly journals Healthy adjustment for new residents with dementia using SettleIN: A feasibility study in UK care homes

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1811-1828 ◽  
Author(s):  
Janine K Hayward ◽  
Kayleigh Marie Nunez ◽  
Clive Ballard ◽  
Aimee Spector
Keyword(s):  
Care Home ◽  
Attrition Rate ◽  
Care Homes ◽  
Current Form ◽  
People With Dementia ◽  
Wide Range ◽  
Field Notes ◽  
New Residents ◽  
Home Placement ◽  
The Impact

Objectives This study aimed to develop and explore feasibility of SettleIN, a staff-led programme about healthy adjustment for people with dementia following care home placement. The main foci were intervention feasibility and the impact of the programme on resident quality of life and mood. Method A manualised intervention developed through consultation with 47 experts was trialled using a mixed-method design. Thirteen new residents with dementia and 24 staff were recruited from six UK care homes. Outcomes were measured at baseline, intervention completion and four-week follow-up. Analysis of staff interviews and field notes is reported. Results Most experts deemed SettleIN to be well structured, comprehensive and appropriate. However, uptake of SettleIN was low. When implemented, staff emphasised integration ease and staff benefits, but that SettleIN may not be universally suitable. High attrition, most commonly due to death and hospitalisation, and partial results from only four participants meant that there was a lack of support for the positive outcomes. Feasibility problems included a lack of staff time and dependency on families for some components. Conclusion SettleIN is acceptable to a wide range of stakeholders though does not appear to be feasible in its current form and improvements are recommended. A second pilot phase is required, which will address the reasons for the high attrition rate in this study and amend the methodology accordingly. This is an important work, as a manualised and standardised approach to healthy adjustment in care is unique and could have huge clinical significance if effective.

scholarly journals 409 - Trends in Involvement, Perceived Role, Role Overload and Self-efficacy of Family Carers of People with Dementia in Care Homes

2020 ◽  
Vol 32 (S1) ◽  
pp. 125-125
Author(s):  
Marleen Prins ◽  
Bernadette Willemse ◽  
Marlous Tuithof ◽  
Henriëtte van der Roest ◽  
Anne Margriet Pot
Keyword(s):  
Self Efficacy ◽  
Care Home ◽  
Care Homes ◽  
Role Overload ◽  
Family Carers ◽  
Change Over Time ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care ◽  
Over Time

IntroductionThe quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.MethodsData from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.ResultsThe number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.ConclusionsDuring the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.

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