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1.
BMC Palliat Care ; 21(1): 91, 2022 Jun 01.
Article in English | MEDLINE | ID: covidwho-1951173

ABSTRACT

PURPOSE: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. METHODS: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. RESULTS: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. CONCLUSION: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.


Subject(s)
COVID-19 , Dementia , Terminal Care , Dementia/psychology , Dementia/therapy , Humans , Pandemics , United Kingdom
2.
Aging Ment Health ; : 1-16, 2022 Jul 12.
Article in English | MEDLINE | ID: covidwho-1931682

ABSTRACT

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

3.
Aging Ment Health ; : 1-14, 2022 Jun 28.
Article in English | MEDLINE | ID: covidwho-1908579

ABSTRACT

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living in the community or in residential care. Part II focused on unpaid carers.Methods: This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst.Results: Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on care homes, whilst the remainder reported on the community. Studies were categorised into five impacts: Cognition; Independence and physical functioning; Behavioural symptoms; Well-being; and Access to care. All studies evidenced the negative pandemic impacts, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health.Conclusions: Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well, and this review provides a call for a future pandemic strategy for dementia. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

4.
BMJ Open ; 11(1): e045889, 2021 01 17.
Article in English | MEDLINE | ID: covidwho-1832434

ABSTRACT

BACKGROUND: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being. AIMS: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. METHODS: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. RESULTS: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. CONCLUSIONS: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.


Subject(s)
COVID-19/psychology , Caregivers/psychology , Dementia/psychology , Health Facility Closure , Social Work , Adult , Aged , Aged, 80 and over , Anxiety/epidemiology , COVID-19/prevention & control , Depression/epidemiology , Female , Humans , Longitudinal Studies , Male , Mental Health , Middle Aged , Social Support , United Kingdom/epidemiology , Young Adult
5.
J Adv Nurs ; 78(7): 2191-2202, 2022 Jul.
Article in English | MEDLINE | ID: covidwho-1706390

ABSTRACT

AIMS: The aim of this study was to explore the impact of the pandemic on the emotional and mental well-being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. DESIGN: Longitudinal, qualitative semi-structured interview study. METHODS: Remote semi-structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow-up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. RESULTS: In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. CONCLUSIONS: The pandemic has had a detrimental impact on the lives of those surrounding care homes-from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. IMPACT: This is the first paper to highlight the effects of the long-lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.


Subject(s)
Family , Nursing Homes , Burnout, Psychological , Caregivers/psychology , Family/psychology , Guilt , Humans , Mental Health , United Kingdom
6.
BMC Geriatr ; 22(1): 129, 2022 02 15.
Article in English | MEDLINE | ID: covidwho-1690962

ABSTRACT

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.


Subject(s)
COVID-19 , Humans , Pandemics , Qualitative Research , SARS-CoV-2
7.
EuropePMC;
Preprint in English | EuropePMC | ID: ppcovidwho-328787

ABSTRACT

Background: With a lack of existing comprehensive reviews, the aim of this mixed-methods systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. Methods This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. Results Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support;carer burden;and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of isolation, and reduced wellbeing. All these negatives impacts were interlinked, with reductions in access to care and support increased carer’s unpaid caring tasks, removing any opportunities for temporary respite, and thus increasing carer burden and reducing mental well-being in many. Conclusions The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

8.
EuropePMC;
Preprint in English | EuropePMC | ID: ppcovidwho-328784

ABSTRACT

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living either in the community or in residential care. Methods This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst. Results Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on people with dementia residing in care homes, whilst the remainder reported on those in the community. Studies were categorised into five impacts: Cognition;Independence and physical functioning;Behavioural symptoms;Well-being;and Access to care. All studies reported on the negative impacts of the pandemic on various aspects of people with dementia’s lives, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health. Conclusions Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

9.
BMC Geriatr ; 22(1): 116, 2022 02 11.
Article in English | MEDLINE | ID: covidwho-1677487

ABSTRACT

BACKGROUND: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. METHODS: Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. RESULTS: Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. CONCLUSIONS: The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.


Subject(s)
COVID-19 , Dementia , Caregivers , Dementia/diagnosis , Dementia/epidemiology , Dementia/therapy , Humans , Pandemics , SARS-CoV-2
10.
EuropePMC; 2021.
Preprint in English | EuropePMC | ID: ppcovidwho-294794

ABSTRACT

Background: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. Methods Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. Results Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support;(2) Technology and issues accessing remote support;(3) Emotional impact;and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. Conclusions The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

11.
EuropePMC; 2021.
Preprint in English | EuropePMC | ID: ppcovidwho-293296

ABSTRACT

Background: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. Methods Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. Results Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support;(2) Technology and issues accessing remote support;(3) Emotional impact;and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. Conclusions The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

12.
Age Ageing ; 51(1)2022 01 06.
Article in English | MEDLINE | ID: covidwho-1545895

ABSTRACT

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; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. 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.


Subject(s)
COVID-19 , COVID-19 Vaccines , Humans , SARS-CoV-2 , United Kingdom/epidemiology , Vaccination
13.
Health Soc Care Community ; 2021 Nov 21.
Article in English | MEDLINE | ID: covidwho-1528376

ABSTRACT

Little is known on how the pandemic has changed care home care delivery. The aim of this study was to explore the impact of COVID-19 on care provision and visits in care homes from staff and family members' perspectives. For this purpose, we conducted a telephone- and zoom-based qualitative semi-structured interview study. 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 online. Participants took part in a semi-structured remote interview. Data were collected between October and November 2020. 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. 42 participants (26 family carers and 16 care home staff) took part. Five themes were generated: (a) Care home reputation and financial implications; (b) Lack of care; (c) Communication or lack thereof; (d) Visiting rights/changes based on residents' needs; (e) Deterioration of residents. With a lack of clear guidance throughout the pandemic, care homes delivered care differently with disparities 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. Improved communication and clear guidance for care homes and the public are required to negate the potentially damaging effects of COVID-19 restrictions upon residents, their families and the carers who support them.

14.
International Psychogeriatrics ; 33(S1):25-26, 2021.
Article in English | ProQuest Central | ID: covidwho-1492972

ABSTRACT

Background:Social distancing rules and the closure of services associated with the COVID-19 pandemic have strongly impacted the physical and mental health of people with dementia. Digital technologies can represent an effective means to compensate for the distress associated with social distancing rules and the decreased use of in-person services. More specifically, technologies such as smartphones, tablets, and smart home systems can minimize the negative effects of social distancing and isolation, and the pressure on health and care systems. Indeed, they can provide a continuity of care and social connectedness, while decreasing exposure to risk. However, barriers such as digital literacy and lower income households can impede the access and use of digital technologies. The aim of this international study was to compare the use of technology by people with dementia from different care settings, and their informal carers across four countries (Italy, UK, Australia, and Poland).Methods:People with dementia and informal carers were invited to participate in semi-structured interviews. Verbatim transcripts were analysed by researchers in each country using inductive thematic analysis.Results:A total of 141 people with dementia and carers (47 in Italy;50 in the UK;18 in Australia;26 in Poland) were interviewed. The analysis identified three overarching themes: 1) different uses of technology (three subthemes);2) benefits of technology (three subthemes);3) limitations of technology (three subthemes). Results show that calls, video calls, and group-chats were effectively used across countries to guarantee the continuity of relationships with professionals, families, and small groups of peers. Telemedicine was used with varying levels of satisfaction. Furthermore, the benefits experienced by carers exceeded those for people with dementia. Similar barriers were reported across countries, and were strictly associated with dementia deficits, low level digital literacy, and the need for carer’s supervision.Conclusions:These international findings highlight the importance to maximise the benefits related to the use of technology according to people with dementia’s impairment and care context. Moreover, it should be complementary to in-person care which should be provided, at least to some extent, even during pandemic times.

15.
International Psychogeriatrics ; 33(S1):24-25, 2021.
Article in English | ProQuest Central | ID: covidwho-1492971

ABSTRACT

Background:Limited access to medical and social services during the coronavirus outbreak has contributed to the exclusion of vulnerable populations, such as people with dementia and older adults. These limitations and the resulting social isolation have highlighted the importance of social relationships and their relationship to the mental health of these people. In the context of dementia, ‘social health’ (SH) can be defined as the role of social abilities for achieving a dynamic balance between opportunities and limitations. The concept encompasses the capacity and independency of an individual to participate in social activities alongside the influences of the surrounding social network.Methods:Using a qualitative and quantitative approach, we will present social health and its determinants of people with dementia related to social care service closures and self-isolation during the SARS-CoV-2 pandemic. We present an analysis of the survey data from the cross-country population- based study and the semi-structured telephone interviews with people with and without dementia from Poland, UK, Australia and Italy aged 65 and over.Results:Measuring the Social Health Index in relation to experiencing self-isolation and changes in the use of services before and during the pandemic among the people with dementia, allow us to identify the level of SH and its determinants. Also, the qualitative results revealed the indirect consequences of the pandemic-related restrictions in the access to social care service and social isolation. Reduction of social support was significantly related to deficits in social health and well-being.Conclusions:Our results highlight the emerging impact of health the current global epidemiological situation upon social health, with a particular focus on those affected by social disadvantage and isolation.

16.
International Psychogeriatrics ; 33(S1):12-13, 2021.
Article in English | ProQuest Central | ID: covidwho-1492967

ABSTRACT

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.

17.
International Psychogeriatrics ; 33(S1):23-24, 2021.
Article in English | ProQuest Central | ID: covidwho-1492945

ABSTRACT

Background:Emerging evidence describes impacts of the COVID-19 pandemic upon people living with dementia and their informal carers, however without evidence-based global comparisons to date. The aim of this international study was to explore and compare the impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries.Methods:People with dementia and informal carers from the UK, Australia, Italy, India, and Poland participated in remote semi-structured interviews. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using thematic analysis, then combined across sites.Results:Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support;(2) Technology and issues accessing remote support;(3) Emotional impact;and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were limited in benefit and usability for those with dementia. Carers frequently described noticeably deteriorating cognitive and physical health in people with dementia.Conclusions:The pandemic has amplified dementia as a global public health problem, and both people affected by the condition ad their carers need support to better access vital support services to live well. This is even more important with emerging new waves and new variants of the virus affecting different countries, in our globally connected world.

18.
Dementia (London) ; 21(1): 250-269, 2022 Jan.
Article in English | MEDLINE | ID: covidwho-1341435

ABSTRACT

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.


Subject(s)
COVID-19 , Dementia , Caregivers , Dementia/epidemiology , Humans , Pandemics , SARS-CoV-2
19.
Aging Ment Health ; 26(5): 905-910, 2022 May.
Article in English | MEDLINE | ID: covidwho-1205493

ABSTRACT

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.


Subject(s)
COVID-19 , Dementia , Caregivers/psychology , Communicable Disease Control , Dementia/psychology , Humans , Pandemics
20.
BMC Public Health ; 21(1): 762, 2021 04 20.
Article in English | MEDLINE | ID: covidwho-1195916

ABSTRACT

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.


Subject(s)
COVID-19/prevention & control , Communicable Disease Control , Comprehension , Dementia , Caregivers , Female , Humans , Interviews as Topic , Public Health , United Kingdom
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