scholarly journals Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e050066
Author(s):  
Emily West ◽  
Pushpa Nair ◽  
Yolanda Barrado-Martin ◽  
Kate R Walters ◽  
Nuriye Kupeli ◽  
...  
Keyword(s):  
Qualitative Interviews ◽  
Family Carers ◽  
Multiple Perspectives ◽  
Daily Lives ◽  
People With Dementia ◽  
Minority Ethnic Groups ◽  
Fear And Anxiety ◽  
The Uk ◽  
The Impact ◽  
Minority Ethnic

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

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.

Policing Belonging

2018 ◽  
Author(s):  
Alpa Parmar
Keyword(s):  
Migration Policy ◽  
Economic Resources ◽  
Police Custody ◽  
Race And Gender ◽  
Minority Ethnic Groups ◽  
The Everyday ◽  
And Gender ◽  
The Uk ◽  
The Impact ◽  
Minority Ethnic

This chapter considers the impact of the police’s increased involvement in migration control. How (and with what consequences) do criminalization, migration, race, and gender intersect when the police are asked to respond to migration and fears about migrants? Drawing on empirical research on police custody suites, the piece discusses how the policing of migration questions the presence of minority ethnic groups in the UK, the wider implications for those who cannot belong, and how procedures are racialized. It also highlights the widening reach of the police, whose work is increasingly carried out in conjunction with other actors including those who have been enlisted to surveil, report, and help enforce migration policy. The chapter brings to light the everyday forms of racism renewed through the policing of migrants while exploring how those who are deemed risky, not belonging, criminal, or a threat to social and economic resources are racialized.

Poetry, philosophy and dementia

2016 ◽  
Vol 11 (2) ◽  
pp. 75-80
Author(s):  
Ellen Jones ◽  
Tab Betts
Keyword(s):  
Family Relationships ◽  
Late Stage ◽  
Short Term Memory ◽  
Family Carers ◽  
Content Type ◽  
People With Dementia ◽  
Intrinsic Quality ◽  
The Uk ◽  
Person With Dementia ◽  
The Impact

Purpose – The purpose of this paper is to describe the use of poetry by family carers as a way into the inner world of a person with late stage dementia, consistent with their values, preferences and experiences; enhancing the wellbeing of both the person with dementia and family carers. Design/methodology/approach – The use of poetry is being increasingly recognised as valuable in improving wellbeing for people with dementia. Poetry has an intrinsic quality which is well-suited for people with dementia: it does not require following a storyline and therefore can be enjoyed by those with no short-term memory. Findings – The paper describes the benefits to both family members and the person with dementia; the use of poetry opened up expression of deep emotions, improved communication and enriched family relationships. Research limitations/implications – Use of poetry by family carers with people with late stage dementia is under researched in the UK and further study of the impact of this intervention would be beneficial. Practical implications – Poetry can be used practically in both small groups in care homes or community settings and also one to one by family carers. Of especial value are poems that have been learnt by heart when young. Originality/value – Finally, the paper also draws attention to the positive lessons we can learn from people with dementia.

scholarly journals MULTIPLE PERSPECTIVES ON WHAT (IF ANY) IS AN OPTIMAL TIME FOR PEOPLE WITH DEMENTIA TO MOVE TO A CARE HOME

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S119-S119
Author(s):  
Kritika Samsi ◽  
Laura Cole ◽  
Jill Manthorpe
Keyword(s):  
Social Workers ◽  
Qualitative Interviews ◽  
Care Home ◽  
Optimal Time ◽  
Family Carers ◽  
Multiple Perspectives ◽  
People With Dementia ◽  
Trade Offs ◽  
Person With Dementia ◽  
At Home

Abstract Deciding an ‘optimal’ time for a person with dementia to move to a care home may be difficult for people with dementia, family carers, and professionals who support them; but there is currently limited evidence to help make this decision. Using phenomenology, we carried out qualitative interviews with 20 family carers, 5 people with dementia, 20 care home managers and 20 social workers, about their experiences, views and attitudes regarding timing of a move to a care home. Social workers indicated that managing risks and safety of person with dementia living in their own home were paramount when considering where person with dementia should live. These concerns included mishandling gas and electrical equipment at home, wandering and getting lost outside, and breakdown of family care. They and care home managers valued wishes of the person with dementia, and minimising any emotional distress to them when a move did come about. Family carers reported feeling stressed, and guilty around decision-making and ultimate move of their relative to a care home. Many described weighing up various risks when reaching ‘tipping point’ and making trade-offs between available options or uncertain future choices. Participants with dementia recognised they had struggled to cope at home and needed more support; however, many found the move difficult as they relocated nearer to family, away from their home and friends, and resigned themselves to less independence. Most people with dementia reported that their carers initiated discussions about timing of move, and that family discussions about this were common.

scholarly journals A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study

Dementia ◽  
2021 ◽  
pp. 147130122110465
Author(s):  
T. Rune Nielsen ◽  
Dorthe S Nielsen ◽  
Gunhild Waldemar
Keyword(s):  
Ethnic Groups ◽  
Outcome Measures ◽  
Pilot Trial ◽  
Well Being ◽  
Family Carers ◽  
Sense Of Competence ◽  
People With Dementia ◽  
Minority Ethnic Groups ◽  
Minority Ethnic

Background There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer’s health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers from minority ethnic groups. The intervention was a modified version of a culturally sensitive case-management program developed in Australia which had been shown to improve carers’ sense of competence in managing dementia and their mental well-being. Methods A small pilot trial was used to examine the feasibility and preliminary efficacy of the intervention. Feasibility indicators included data on recruitment, retention, adherence, and fidelity. Acceptability and suitability of the intervention was explored in post-intervention interviews with family carers, and baseline and follow-up scores for outcome measures were examined. Results Ten (30%) of 33 eligible family carers consented to participate in the study, but three were lost to follow-up and seven (70%) family carers completed the trial. Intervention fidelity, acceptance, and satisfaction were high. Results for outcome measures indicated that the intervention may improve family carers’ sense of competence by helping them cope better with challenges relating to caring and managing dementia and improved their satisfaction with primary care services. Conclusions The results suggest that the intervention is feasible and worth exploring for family carers of people with dementia from minority ethnic groups in Denmark.

scholarly journals ‘Four walls and a garden’: Exploring the experiences of families affected by dementia during the COVID-19 pandemic

Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening
Keyword(s):  
Qualitative Study ◽  
Peer Support ◽  
Family Carers ◽  
Social Disruption ◽  
Structured Interviews ◽  
Social Contacts ◽  
Social Division ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Introduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: ‘busy life before lockdown’; Isolation: ‘ four walls and a garden’; Living with restrictions: ‘ treading on eggshells’; Discovering positives: ‘you are in the same boat’; Easing lockdown: ‘ raring to go’; Heightened uncertainty: ‘ things have changed’. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

scholarly journals Social Justice in a Multicultural Society: Experience from the UK

2007 ◽  
Vol 1 (1) ◽  
pp. 93-108 ◽  
Author(s):  
Gary Craig
Keyword(s):  
Public Policy ◽  
Social Justice ◽  
Large Scale ◽  
Political Life ◽  
Minority Ethnic Groups ◽  
Just Society ◽  
The Uk ◽  
The Right ◽  
The Impact ◽  
Minority Ethnic

Social justice is a contested concept. For example, some on the left argue for equality of outcomes, those on the right for equality of opportunities, and there are differing emphases on the roles of state, market and individual in achieving a socially just society. These differences in emphasis are critical when it comes to examining the impact that public policy has on minority ethnic groups. Social justice should not be culture-blind any more than it can be gender-blind yet the overwhelming burden of evidence from the UK shows that public policy, despite the political rhetoric of fifty years of governments since large-scale immigration started, has failed to deliver social justice to Britain’s minorities. In terms of outcomes, in respect for and recognition of diversity and difference, in their treatment, and in the failure of governments to offer an effective voice to minorities, the latter continue to be marginalised in British social, economic and political life. This is not an argument for abandoning the project of multiculturalism, however, but for ensuring that it is framed within the values of social justice.

scholarly journals Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers

2021 ◽  
pp. 089198872199681
Author(s):  
Kerry Hanna ◽  
Clarissa Giebel ◽  
Hilary Tetlow ◽  
Kym Ward ◽  
Justine Shenton ◽  
...  
Keyword(s):  
Public Health ◽  
Mental Health ◽  
Social Support ◽  
Support Services ◽  
Mental Wellbeing ◽  
Daily Lives ◽  
Health Measures ◽  
Social Support Services ◽  
The Uk ◽  
The Impact

Background: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. Method: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. Results: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. Conclusions: The findings from this research shed light on the longer-term psychological impacts of the UK Government’s public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.

scholarly journals Personality and Dementia: an Approach to Differential Profile of the Caregiver

2011 ◽  
Vol 1 (3) ◽  
pp. 85-94
Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros
Keyword(s):  
Relevant Information ◽  
Personality Profile ◽  
Family Carers ◽  
Psychological Variables ◽  
People With Dementia ◽  
The Family ◽  
Study Population ◽  
The One ◽  
The Impact

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.

scholarly journals Places Visited, Maintained, or Abandoned Outside Home: A Community Mobility Need of Older Adults With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 673-673
Author(s):  
Isabel Margot-Cattin ◽  
Sophie Gaber ◽  
Nicolas Kuhne ◽  
Camilla Malinowski ◽  
Louise Nygard
Keyword(s):  
Older Adults ◽  
Cognitive Decline ◽  
Health Condition ◽  
Driving Cessation ◽  
Age In Place ◽  
Community Mobility ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Abstract For older adults to “age in place”, they need to keep engaged and mobile in their communities, whatever their health condition. The impact of age and cognitive decline on community mobility is a growing problem in Europe and worldwide. Engaging in occupations outside home implies being able to get to those places where activities are performed. Yet little is known regarding the types of places visited, maintained or abandoned for older adults with/without dementia. This study addresses community mobility needs through the places people visit, maintain or abandon. People with and without dementia, aged 55+, were interviewed using the Participation in ACTivities and Places OUTside the Home (ACT-OUT) questionnaire across Switzerland (n=70), Sweden (n=69) and the UK (n=128). Results show that people with dementia experience a higher rate of abandonment for more places than regular older adults. Insights about driving cessation and access to travel passes will be presented.

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