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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.
Healthcare (Basel) ; 9(12)2021 Dec 03.
Article in English | MEDLINE | ID: covidwho-1896838

ABSTRACT

Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic. A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed between June and August 2020 after the first wave of COVID-19 in Poland. Three overarching themes were identified: (1) care re-organization; (2) psychological responses; (3) emerging needs. The factor underlying all these elements was reliance on other people. Social support and engagement are vital to the ongoing health and well-being of people living with dementia and their informal carers. Services need to be strengthened to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment, people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their needs.

5.
J Fam Nurs ; 28(3): 205-218, 2022 Aug.
Article in English | MEDLINE | ID: covidwho-1883446

ABSTRACT

The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system's response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.


Subject(s)
COVID-19 , Dementia , Aged , Australia , Caregivers , Humans , Qualitative Research
6.
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
7.
Aging Ment Health ; : 1-9, 2022 Mar 25.
Article in English | MEDLINE | ID: covidwho-1764375

ABSTRACT

OBJECTIVES: The COVID-19 pandemic and public health measures caused serious consequences for several population cohorts, including people with dementia in care homes and their families. The aim of this study was to explore the impact of COVID-19 on care home residents with dementia as experienced by family carers in Italy. Specifically, strategies implemented to overcome the pandemic's constraints, their influence upon care, and consequences for everyday life of residents with dementia and carers were investigated. METHODS: Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis. RESULTS: 26 family carers were interviewed. Three themes emerged: (1) COVID-19 restrictions negatively affected both residents with dementia and family carers, (2) Changing policies in care homes during COVID-19, and (3) Technology use in care homes during COVID-19. COVID-19 restrictions severely affected care home residents with dementia, disrupted their daily living, and accelerated their cognitive decline. Consequently carers' emotional burdens increased. Care home response strategies (safe visiting and digital solutions) were critical, though they were not enough to compensate for the lack of close in-person contacts. CONCLUSIONS: Mixed evidence emerged about the feasibility of care home strategies and their associated benefits. To meet arising needs and possible future pandemic waves, there is a need for updated health strategies. These should prioritise a continuity of therapeutic activities and minimize negative effects on residents' quality of life, whilst incorporating feasible and accessible digital solutions to provide remote communication and psychological support for family carers.

8.
Health Soc Care Community ; 2022 Feb 20.
Article in English | MEDLINE | ID: covidwho-1707849

ABSTRACT

The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID-19 among community-dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community-based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community-based services in Italy, participated in remote semi-structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in-person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID-19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID-19. Face-to-face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face-to-face activities could better counterbalance the multiple adverse outcomes of COVID-19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high-quality care even during pandemic times.

9.
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
10.
BMC Health Serv Res ; 22(1): 253, 2022 Feb 24.
Article in English | MEDLINE | ID: covidwho-1697977

ABSTRACT

BACKGROUND: Older adults in Colombia have seen a number of stressful life events - including the Colombian armed conflict, forced misplacement and recently COVID-19. These events likely have had and are having a substantial impact on people's mental health and well-being, whilst mental health care provision in Colombia is not sufficient and often access is limited and unaffordable. Therefore, the aim of this study is to understand the impact of stressful life events on the mental health of older adults living in Colombia, and co-produce, pilot, and evaluate a community-based mental health intervention in Turbo. METHODS: This 3-year international mixed-methods study comprises of three phases: Phase I will explore the impact of stressful life events on the mental health of older adults living in Colombia, and their mental health needs, via quantitative needs assessments and qualitative interviews and focus groups; Phase II will involve synthesising the findings from Phase I as well as conducting a systematic review and qualitative interviews with experts into implementing mental health interventions in LMICs to co-produce a community-based mental health intervention with older adults and local community group leaders and care providers; Phase III will involve the piloting and evaluation of the mental health intervention via quantitative and qualitative assessments. Co-production and public involvement underpin each element of this project. DISCUSSION: Appropriate mental health care is as important as physical health care, but this study also looks at how we might integrate these findings into community-level public health initiatives for application both within Colombia and more widely in both LMICs and more developed countries. This study protocol will act as a guide for the development and adaptation of psychosocial mental health interventions in different cultures and contexts.


Subject(s)
Health Services Needs and Demand , Mental Health Services , Mental Health , Stress, Psychological , Aged , Armed Conflicts/psychology , COVID-19/psychology , Colombia/epidemiology , Focus Groups , Humans , Systematic Reviews as Topic
11.
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
12.
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.

13.
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.

14.
EuropePMC; 2021.
Preprint in English | EuropePMC | ID: ppcovidwho-316075

ABSTRACT

Background: Older people with dementia are particularly at risk of COVID-19, whilst still little is known about the indirect impact of the Pandemic on the lives of those living with and caring for someone with dementia. The aim of this study was to investigate the impact of the Pandemic on the lives of people with dementia and their informal carers in the context of using social and medical services in Poland. Methods: A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed. Interviews were collected between June and August 2020 via phone after the first wave of COVID-19 in Poland. Data were analysed using NVivo software by four team members. Results: Three overarching themes emerged: (1) Care re-organization;(2) Psychological responses;(3) Emerging needs. The factor underlying all these elements were a reliance on other people. Regardless of the type of support (informal or formal), a sense of presence of others and maintaining mutual contacts displayed as crucial elements influencing the well-being of people with dementia and informal carers. Conclusions: Social support and engagement are vital to the ongoing health and wellbeing of people living with dementia and their informal carers. Services need sustaining to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their need.

15.
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
16.
Alzheimers Dement (N Y) ; 7(1): e12221, 2021.
Article in English | MEDLINE | ID: covidwho-1669652

ABSTRACT

INTRODUCTION: Barriers to recruitment for dementia studies are well documented. As part of the UK government's Dementia 2020 strategy, a nationally consistent system to increase public engagement and participation in research was launched in February 2015. METHODS: We describe the development of the "Join Dementia Research" registry, including evolution of policy, involvement of people with dementia in co-production, data requirements, governance, technology, and the impact on study recruitment and what factors may have contributed to the services success. RESULTS: The UK-wide online, telephone, and postal service has registered 47,071 volunteers, with 33,139 people (67.9% of all volunteers) taking part in 378 studies, with 49,954 total study enrolments. This has taken place across 295 research sites, involved 1522 researchers, and resulted in 134 peer-reviewed publications. DISCUSSION: Public registries of individuals interested in research, with user-provided data enabling basic phenotyping, are effective at increasing public engagement with research and removing barriers to study recruitment. Deeper pheno/genotyping could be undertaken to improve matching, but how and when that information is collected will be a key factor.

17.
Int Psychogeriatr ; : 1-10, 2022 Jan 18.
Article in English | MEDLINE | ID: covidwho-1632653

ABSTRACT

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 analyzed 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.

18.
Int J Environ Res Public Health ; 18(24)2021 12 20.
Article in English | MEDLINE | ID: covidwho-1599165

ABSTRACT

Increasing numbers of people living with dementia (PLWD), and a pressured health and social care system, will exacerbate inequalities in mortality for PLWD. There is a dearth of research examining multiple factors in mortality risk among PLWD, including application of large administrative datasets to investigate these issues. This study explored variation mortality risk variation among people diagnosed with dementia between 2002-2016, based on: age, sex, ethnicity, deprivation, geography and general practice (GP) contacts. Data were derived from electronic health records from a cohort of Clinical Practice Research Datalink GP patients in England (n = 142,340). Cox proportional hazards regression modelled mortality risk separately for people with early- and later- onset dementia. Few social inequalities were observed in early-onset dementia; men had greater risk of mortality. For early- and later-onset, higher rates of GP observations-and for later-onset only dementia medications-are associated with increased mortality risk. Social inequalities were evident in later-onset dementia. Accounting for other explanatory factors, Black and Mixed/Other ethnicity groups had lower mortality risk, more deprived areas had greater mortality risk, and higher mortality was observed in North East, South Central and South West GP regions. This study provides novel evidence of the extent of mortality risk inequalities among PLWD. Variance in mortality risk was observed by social, demographic and geographic factors, and frequency of GP contact. Findings illustrate need for greater person-centred care discussions, prioritising tackling inequalities among PLWD. Future research should explore more outcomes for PLWD, and more explanatory factors of health outcomes.


Subject(s)
Dementia , Cohort Studies , Demography , Geography , Humans , Male , Socioeconomic Factors
19.
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.

20.
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.

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