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1.
Int J Environ Res Public Health ; 19(7)2022 Apr 04.
Article in English | MEDLINE | ID: covidwho-1785657

ABSTRACT

The last decade has seen numerous policy reforms to emplace person-centered social care. Consequently, the public has been given more information, choice, and autonomy to decide how best they want to be cared for later in life. Despite this, adults generally fail to plan or prepare effectively for their future care needs. Understanding the behavioral antecedents of person-centered decision-making is thus critical for addressing key gaps in the provision of quality social care. To this end, we conducted a literature review of the psychological and health sciences with the aim of identifying the aspects that influence person-centered decision-making in social care. Using an established theoretical framework, we distilled nine behavioral factors-knowledge, competency, health, goal clarity, time discounting, familiarity, cognitive biases, cognitive overload, and emotion-associated with "Capability," "Opportunity," "Motivation," and "Behavior" that explained person-centered decision-making in social care. These factors exist to different degrees and change as a person ages, gradually impacting their ability to obtain the care they want. We discuss the role of carers and the promise of shared decision-making and conclude by advocating a shift from personal autonomy to one that is shared with carers in the delivery of quality social care.


Subject(s)
Caregivers , Social Support , Adult , Caregivers/psychology , Decision Making , Decision Making, Shared , Humans , Patient-Centered Care , Personal Autonomy , Quality of Health Care
2.
Clin J Oncol Nurs ; 26(2): 165-175, 2022 04 01.
Article in English | MEDLINE | ID: covidwho-1765479

ABSTRACT

BACKGROUND: Family caregivers provide complex care for patients with cancer, including management of multiple symptoms associated with the disease and its treatment. OBJECTIVES: The objective of this pilot project was to develop and conduct feasibility testing of a family caregiver educational intervention for symptom management. METHODS: The intervention was conducted with 23 family caregivers of patients with lung or gynecologic cancer to evaluate feasibility testing and assessment of caregiver preparedness, quality of life, and psychological distress at baseline and three and seven weeks postintervention. FINDINGS: Family caregivers were very interested in education related to their role in symptom management, with management of constipation, dyspnea, and diarrhea as the highest priorities. The intervention was feasible and valuable in assisting family caregivers in assessing symptoms and making decisions regarding treatment choices.


Subject(s)
Caregivers , Neoplasms , Caregivers/psychology , Female , Humans , Neoplasms/psychology , Palliative Care , Pilot Projects , Quality of Life
3.
J Alzheimers Dis ; 86(2): 931-939, 2022.
Article in English | MEDLINE | ID: covidwho-1753332

ABSTRACT

BACKGROUND: The COVID-19 pandemic poses enormous social challenges, especially during lockdown. People with cognitive decline and their caregivers are particularly at risk of lockdown consequences. OBJECTIVE: To investigate psychosocial effects in (pre-)dementia patients and caregivers during second lockdown and compare effects between first and second lockdown. METHODS: We included n = 511 (pre-)dementia patients and n = 826 caregivers from the Amsterdam Dementia Cohort and via Alzheimer Nederland. All respondents completed a self-designed survey on psychosocial effects of COVID-19. We examined relations between experienced support and psychosocial and behavioral symptoms using logistic regression. In a subset of patients and caregivers we compared responses between first and second lockdown using generalized estimating equation (GEE). RESULTS: The majority of patients (≥58%) and caregivers (≥60%) reported that family and friends, hobbies, and music helped them cope. Support from family and friends was strongly related to less negative feelings in patients (loneliness: OR = 0.3[0.1-0.6]) and caregivers (loneliness: OR = 0.2[0.1-0.3]; depression: OR = 0.4[0.2-0.5]; anxiety: OR = 0.4[0.3-0.6]; uncertainty: OR = 0.3[0.2-0.5]; fatigue: OR = 0.3[0.2-0.4]; stress: OR = 0.3[0.2-0.5]). In second lockdown, less psychosocial and behavioral symptoms were reported compared to first lockdown (patients; e.g., anxiety: 22% versus 13%, p = 0.007; apathy: 27% versus 8%, p < 0.001, caregivers; e.g., anxiety: 23% versus 16%, p = 0.033; patient's behavioral problems: 50% versus 35%, p < 0.001). Patients experienced more support (e.g., family and friends: 52% versus 93%, p < 0.001; neighbors: 28% versus 66%, p < 0.001). CONCLUSION: During second lockdown, patients and caregivers adapted to challenges posed by lockdown, as psychosocial and behavioral effects decreased, while patients experienced more social support compared to first lockdown. Support from family and friends is a major protective factor for negative outcomes in patients and caregivers.


Subject(s)
COVID-19 , Dementia , Caregivers/psychology , Communicable Disease Control , Dementia/epidemiology , Dementia/psychology , Humans , Pandemics
4.
Pediatrics ; 149(4)2022 Apr 01.
Article in English | MEDLINE | ID: covidwho-1753235

ABSTRACT

OBJECTIVES: The family stress model proposes economic hardship results in caregiver distress and relational problems, which negatively impact youth outcomes. We extend this model to evaluate the impact of coronavirus disease 2019 pandemic-related family hardships on caregiver and youth stress, and, in turn, youth's psychological well-being. We also investigate how social supports moderate this relationship. METHODS: We used 2 samples of cross-sectional survey data collected between May 2020 and May 2021: children aged 2 to 12 years (n = 977) and adolescents aged 11 to 17 years (n = 669). Variables included pandemic-related family hardships, stress, social support, and youth life satisfaction. Data were analyzed using structural equation modeling. RESULTS: Experiencing more pandemic-related family hardships was associated with increased caregiver and youth stress (b = 0.04 to 0.21, SE = 0.01-0.02) and, in turn, decreased youth life satisfaction (b = -0.36 to -0.38, SE = 0.04-0.07). Social connectedness (b^ = 0.11-0.17, SE = 0.04) and family engagement (b^ = 0.12-0.18, SE = 0.05-0.06) had direct positive associations with life satisfaction; for children aged 2 to 12 years, greater family engagement was associated with decreased effect of child stress on life satisfaction (b^ = 0.15, SE = 0.05). For adolescents, females had higher levels of stress compared with males (b^ = 0.40, SE = 0.6), and having anxiety and/or depression was associated with decreased life satisfaction (b^ = -0.24, SE = 0.11). CONCLUSIONS: Caregivers and youth who experienced more coronavirus disease 2019 pandemic hardships had higher levels of stress, particularly adolescent females. Although stress negatively impacted life satisfaction across all ages, family engagement was a protective factor for children aged 2 to 12 years, whereas having anxiety and/or depression was a risk factor for adolescents. For all youth, however, being more socially connected and engaged with family promoted life satisfaction.


Subject(s)
COVID-19 , Adolescent , Anxiety/epidemiology , COVID-19/epidemiology , Caregivers/psychology , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Male , Pandemics
5.
Int J Environ Res Public Health ; 19(6)2022 03 13.
Article in English | MEDLINE | ID: covidwho-1742451

ABSTRACT

The mental health impacts of the COVID-19 pandemic on young adult carers have been neglected. This study aimed to identify COVID-19 related risk factors for young adult carers and to investigate their mental health relative to non-carer peers. Of the 1823 Italians aged 18-29 who completed an online survey, 1458 reported no ill family member (non-carers). Young adult carers included 268 with an ill parent, and 97 with an ill non-parent family member. Two mental health outcome categories were measured: COVID-19-related (risky health behaviors, loneliness, home violence, fear of COVID-19) and general (anxiety, depression, wellbeing). Six COVID-19 related risk factors were significantly correlated with poorer mental health in young adult carers. These factors constituted a COVID-19 Context Index. Compared to non-carers, young adult carers reported poorer mental health across all outcomes, as expected. The prediction that young adult carers caring for an ill parent would report poorer mental health than those caring for ill non-parent family members was evident only for the COVID-19-related mental health outcomes. The elevated rates of clinically significant distress and pandemic-related mental health problems among young adult carers highlight this group as a priority for mental health promotion interventions and whole-of-family support across multiple sectors.


Subject(s)
COVID-19 , Pandemics , Adolescent , Adult , COVID-19/epidemiology , Caregivers/psychology , Family , Humans , Outcome Assessment, Health Care , Young Adult
6.
Alzheimers Dement ; 18(4): 700-789, 2022 Apr.
Article in English | MEDLINE | ID: covidwho-1739115

ABSTRACT

This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $271.6 billion in 2021. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes - costs that have been aggravated by COVID-19. Members of the dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI awareness and diagnosis, especially in underserved communities, and to encourage greater participation in MCI-related clinical trials.


Subject(s)
Alzheimer Disease , COVID-19 , Cognitive Dysfunction , Aged , Alzheimer Disease/diagnosis , Caregivers/psychology , Cognitive Dysfunction/epidemiology , Health Care Costs , Humans , Medicare , United States/epidemiology
7.
Int J Environ Res Public Health ; 19(5)2022 03 01.
Article in English | MEDLINE | ID: covidwho-1736912

ABSTRACT

Informal carers play a vital role in supporting people living with mental health conditions, but comparatively little is known about the economic value of caring. This study undertook an online survey of adult informal carers supporting adults with mental health conditions to better understand the impacts of caring on carer quality of life, levels of loneliness, finances and employment, as well as estimate the economic value of time spent caring. In total, 712 carers participated in the multi-national survey between August 2019 and April 2020. A total of 17% were male, with a mean age of 53, and 68% supported a child living with a mental health condition. A total of 56% of care recipients were male, with a mean age of 37. Adverse impacts on quality of life, loneliness and personal finances were greatest in carers living with care recipients. Overall mean weekly hours of care were 43.42, rising to 65.41 for carers living with care recipients. Mean weekly costs of care per carer ranged from €660 to €2223 depending on living arrangements. Annual costs ranged between €34,960 and €125,412, depending on living arrangements and valuation method. Informal care costs are substantial, and policy makers should consider investing more in carer support, especially for carers living with care recipients.


Subject(s)
Caregivers , Mental Disorders , Adult , Caregivers/psychology , Child , Family/psychology , Humans , Male , Mental Health , Middle Aged , Quality of Life
8.
Int J Environ Res Public Health ; 19(5)2022 02 28.
Article in English | MEDLINE | ID: covidwho-1736910

ABSTRACT

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15-17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.


Subject(s)
Grandparents , Adolescent , Aged , Caregivers/psychology , Communication , Humans , Italy , Slovenia
10.
Front Public Health ; 10: 734308, 2022.
Article in English | MEDLINE | ID: covidwho-1715075

ABSTRACT

Socioeconomic disadvantage is associated with larger COVID-19 disease burdens and pandemic-related economic impacts. We utilized the longitudinal Adolescent Brain Cognitive Development Study to understand how family- and neighborhood-level socioeconomic disadvantage relate to disease burden, family communication, and preventative responses to the pandemic in over 6,000 youth-caregiver dyads. Data were collected at three timepoints (May-August 2020). Here, we show that both family- and neighborhood-level disadvantage were associated with caregivers' reports of greater family COVID-19 disease burden, less perceived exposure risk, more frequent caregiver-youth conversations about COVID-19 risk/prevention and reassurance, and greater youth preventative behaviors. Families with more socioeconomic disadvantage may be adaptively incorporating more protective strategies to reduce emotional distress and likelihood of COVID-19 infection. The results highlight the importance of caregiver-youth communication and disease-preventative practices for buffering the economic and disease burdens of COVID-19, along with policies and programs that reduce these burdens for families with socioeconomic disadvantage.


Subject(s)
COVID-19 , Caregivers , Adolescent , COVID-19/epidemiology , COVID-19/prevention & control , Caregivers/psychology , Communication , Humans , SARS-CoV-2 , Socioeconomic Factors
11.
Int J Environ Res Public Health ; 19(5)2022 02 22.
Article in English | MEDLINE | ID: covidwho-1706303

ABSTRACT

End-of-life conversations are among the most challenging of all communication scenarios and on the agenda of several healthcare settings, including nursing homes (NHs). They may be also difficult for experienced healthcare professionals (HCPs). This study explores the difficulties experienced by Italian NH staff in end-of-life conversations with family caregivers (FCs) during COVID-19 pandemic to uncover their educational needs. A qualitative descriptive study based on inductive thematic analysis was performed. Twenty-one HCPs across six Italian NHs were interviewed. Four themes described their experiences of end-of-life conversations: (1) communicating with FCs over the overall disease trajectory; (2) managing challenging emotions and situations; (3) establishing a partnership between HCPs and FCs; (4) addressing HCPs' communication skills needs. HCPs had to face multiple challenging situations that varied across the care period as well as complex emotions such as anxiety, guilt, uncertainty, fear, anger, or suffering, which required tailored answers. COVID-19 pandemic increased FCs' aggressive behaviors, their distrust, and uncertainty due to visitation restrictions. HCPs had to overcome this by developing a set of strategies, including adoption of an active-listening approach, supportive communication, and explicit acknowledgement of FCs' emotions. Since communication needs were mostly practical in nature, HCPs valued practical communication training.


Subject(s)
COVID-19 , Terminal Care , COVID-19/epidemiology , Caregivers/psychology , Communication , Humans , Nursing Homes , Pandemics , SARS-CoV-2 , Terminal Care/psychology
12.
Z Gerontol Geriatr ; 55(2): 136-142, 2022 Mar.
Article in German | MEDLINE | ID: covidwho-1689477

ABSTRACT

BACKGROUND: Family caregivers are faced with a variety of challenges and burdens. Recent online studies showed that these burdens have increased even more during the corona pandemic. Here we conducted a low-threshold written survey to assess psychological distress in highly burdened family caregivers during the corona pandemic in Germany. METHOD: Both quantitative and qualitative analyses were conducted within the context of a tiered counselling intervention study for highly burdened family caregivers (N = 165) to assess their experience of burden, anxieties, worries and desires regarding care. RESULTS: A quarter of all caregivers (26%) reported high fear of becoming infected with SARS-CoV­2 and 50% feared their care recipient could get infected. Almost half of all caregivers reported (47%) that corona had a high impact on the care situation and increased the burden of caregiving (51%). A loss of professional support and less time for themselves were reported most often. The desire for additional support was frequently expressed. The level of care, the age of the caregiver and the previous use of care services were found to be predictors of the psychological distress experienced by care recipients. CONCLUSION: The results illustrate an increased burden related to caregiving during the corona pandemic. In order to cope with this complex additional burden, there is an even higher need for support to improve care and social participation for both care recipients and caregivers during the pandemic.


Subject(s)
COVID-19 , Pandemics , COVID-19/epidemiology , Caregivers/psychology , Humans , SARS-CoV-2 , Surveys and Questionnaires
13.
BMC Geriatr ; 22(1): 125, 2022 02 14.
Article in English | MEDLINE | ID: covidwho-1686005

ABSTRACT

BACKGROUND: The COVID-19 pandemic disrupts the daily routine and increases the caregiving load of the family carers of older adults. This study examined how the pandemic may impact mental health and investigated the prevalence of anxiety and depressive symptoms in family carers of older people. METHODS: Two hundred and thirty-six family carers of older adults participated in this cross-sectional survey study. Outcome measures included their symptoms of anxiety and depression, pandemic-related psychosocial factors, external factors, and the practice of preventive behaviours. RESULTS: Caseness prevalence of anxiety and depression among family carers was 25 and 56% respectively. Working carers were more depressed than non-working, while younger carers reported more anxiety and depression symptoms than older. Hand hygiene and getting drugs from the hospital positively predicted depression while healthy lifestyle negatively predicted depression. These variables, together with perceived risk and severity and the worry of getting infected, predicted anxiety. CONCLUSIONS: The prevalence of mental health symptoms was alarming. Telemedicine practice, including online pharmaceutical services and the Internet Hospital plus Drug Delivery platform, could be a solution in alleviating the burden and worry of infection of family carers. Tailored-made interventions by age and working status of the family carers are recommended.


Subject(s)
COVID-19 , Pandemics , Aged , Anxiety/diagnosis , Anxiety/epidemiology , Caregivers/psychology , Cross-Sectional Studies , Hong Kong/epidemiology , Humans , Independent Living , SARS-CoV-2
14.
Sci Rep ; 12(1): 2418, 2022 02 14.
Article in English | MEDLINE | ID: covidwho-1684101

ABSTRACT

As a global health emergency, the rapid spread of the novel coronavirus disease (COVID-19) led to the implementation of widespread restrictions (e.g., quarantine, physical/social distancing measures). However, while these restrictions reduce the viral spread of COVID-19, they may exacerbate behavioural and cognitive symptoms in dementia patients and increase pressure on caregiving. Here, we aimed to assess the impact of COVID-19 and related restrictions on both carers and people living with dementia across the world. We conducted an international survey (Australia, Germany, Spain, and the Netherlands) to assess the impact of COVID-19 on carers and people living with dementia. People with dementia experienced worsened neuropsychiatric symptoms since the outbreak of COVID-19, most commonly, depression, apathy, delusions, anxiety, irritability, and agitation. Regression analyses revealed that limited understanding of the COVID-19 situation and not living with the carer was associated with worsened neuropsychiatric symptoms. Carers also reported a decline in their own mental health, increased stress and reduced social networks as a result of COVID-19 and related restrictions. Regression analyses revealed uncertainty about the future and loneliness were associated with worsened carer mental health. Findings from this study will inform strategies for the development of support services and compassionate protocols that meet the evolving needs of those living with dementia and their carers.


Subject(s)
COVID-19/psychology , Caregivers/psychology , Dementia/psychology , Mental Health/statistics & numerical data , Surveys and Questionnaires , Adult , Aged , Aged, 80 and over , Anxiety/psychology , Australia , COVID-19/epidemiology , COVID-19/virology , Dementia/therapy , Female , Germany , Humans , Male , Mental Health/standards , Middle Aged , Netherlands , Pandemics/prevention & control , Quarantine/psychology , Regression Analysis , SARS-CoV-2/physiology , Spain
15.
Pediatr Blood Cancer ; 69(4): e29535, 2022 04.
Article in English | MEDLINE | ID: covidwho-1664432

ABSTRACT

We compared psychosocial functioning of children with cancer and their caregivers in several phases of the coronavirus disease 2019 (COVID-19) pandemic to before COVID-19. One or more questionnaires on health-related quality of life (HRQoL) or fatigue of children or distress of their caregivers was available from 1644 families. In children with cancer, HRQoL was stable throughout the COVID-19 pandemic. Fatigue was slightly lower and sleep somewhat better during the pandemic than before. Caregiver distress was lower in the first pandemic phase, but increased to pre-COVID-19 levels in later phases, indicating that the length and consequences of the pandemic may be weighing on them.


Subject(s)
COVID-19 , Caregivers , Neoplasms , Pandemics , Caregivers/psychology , Child , Fatigue , Humans , Neoplasms/epidemiology , Neoplasms/psychology , Netherlands , Psychological Distress , Quality of Life
16.
PLoS One ; 17(1): e0260949, 2022.
Article in English | MEDLINE | ID: covidwho-1648843

ABSTRACT

BACKGROUND: The UK began delivering its COVID-19 vaccination programme on 8 December 2020, with health and social care workers (H&SCWs) given high priority for vaccination. Despite well-documented occupational exposure risks, however, there is evidence of lower uptake among some H&SCW groups. METHODS: We used a mixed-methods approach-involving an online cross-sectional survey and semi-structured interviews-to gain insight into COVID-19 vaccination beliefs, attitudes, and behaviours amongst H&SCWs in the UK by socio-demographic and employment variables. 1917 people were surveyed- 1656 healthcare workers (HCWs) and 261 social care workers (SCWs). Twenty participants were interviewed. FINDINGS: Workplace factors contributed to vaccination access and uptake. SCWs were more likely to not be offered COVID-19 vaccination than HCWs (OR:1.453, 95%CI: 1.244-1.696). SCWs specifically reported uncertainties around how to access COVID-19 vaccination. Participants who indicated stronger agreement with the statement 'I would recommend my organisation as a place to work' were more likely to have been offered COVID-19 vaccination (OR:1.285, 95%CI: 1.056-1.563). Those who agreed more strongly with the statement 'I feel/felt under pressure from my employer to get a COVID-19 vaccine' were more likely to have declined vaccination (OR:1.751, 95%CI: 1.271-2.413). Interviewees that experienced employer pressure to get vaccinated felt this exacerbated their vaccine concerns and increased distrust. In comparison to White British and White Irish participants, Black African and Mixed Black African participants were more likely to not be offered (OR:2.011, 95%CI: 1.026-3.943) and more likely to have declined COVID-19 vaccination (OR:5.550, 95%CI: 2.294-13.428). Reasons for declining vaccination among Black African participants included distrust in COVID-19 vaccination, healthcare providers, and policymakers. CONCLUSION: H&SCW employers are in a pivotal position to facilitate COVID-19 vaccination access, by ensuring staff are aware of how to get vaccinated and promoting a workplace environment in which vaccination decisions are informed and voluntary.


Subject(s)
COVID-19 Vaccines/administration & dosage , COVID-19/prevention & control , Caregivers/psychology , Health Personnel/psychology , Vaccination Refusal/psychology , Vaccination/psychology , Adult , COVID-19/epidemiology , COVID-19/immunology , COVID-19 Vaccines/supply & distribution , Cross-Sectional Studies , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , SARS-CoV-2/pathogenicity , Surveys and Questionnaires , United Kingdom/epidemiology , Vaccination Coverage/organization & administration , Vaccination Coverage/statistics & numerical data , Vaccination Refusal/statistics & numerical data
17.
PLoS One ; 17(1): e0262475, 2022.
Article in English | MEDLINE | ID: covidwho-1631476

ABSTRACT

INTRODUCTION: COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study. METHODS: We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer. RESULTS: 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers. DISCUSSION: It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period.


Subject(s)
COVID-19/epidemiology , Dementia/psychology , Quality of Life , Aged , Aged, 80 and over , COVID-19/virology , Caregivers/psychology , Dementia/pathology , England/epidemiology , Female , Humans , Male , Middle Aged , Quarantine , SARS-CoV-2/isolation & purification , Severity of Illness Index
18.
PLoS One ; 16(12): e0260506, 2021.
Article in English | MEDLINE | ID: covidwho-1591515

ABSTRACT

BACKGROUND: There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. METHODS: We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. RESULTS: Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. CONCLUSIONS: Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.


Subject(s)
Caregivers/psychology , Dementia/diagnosis , Social Support , Adult , Aged , Aged, 80 and over , Female , Focus Groups , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research
19.
J Am Med Dir Assoc ; 23(3): 428-433.e1, 2022 03.
Article in English | MEDLINE | ID: covidwho-1587378

ABSTRACT

OBJECTIVES: The COVID-19 pandemic created unique stressors for caregivers of persons with dementia living in long-term care (LTC) facilities. The purpose of this qualitative study was to identify the challenges associated with caring for a relative with dementia in LTC during the pandemic, as well as resources, strategies, and practices caregivers found helpful in coping with COVID-19. DESIGN: This study was conducted within the context of an ongoing randomized controlled trial of a psychosocial intervention to support caregivers. Open-ended survey responses (n = 125) and semistructured interviews with a subset of the sample (n = 20) collected between June 2020 and June 2021 explored caregivers' experiences during COVID-19. SETTING AND PARTICIPANTS: Participants included 125 family caregivers of persons with dementia living in residential LTC. METHODS: Thematic analysis was used to identify themes capturing caregivers' experiences. RESULTS: In addition to concerns about COVID-19 infection, participants reported key challenges such as the difficulty of maintaining contact with relatives because of visiting restrictions, lack of information about relatives' health and well-being, worries about overburdened LTC staff, impossibility of returning relatives home from the LTC facility, and fears about relatives dying alone. Participants also identified resources, strategies, and practices that they perceived as helpful, including effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives. CONCLUSIONS AND IMPLICATIONS: This qualitative analysis informs recommendations for practice within LTC facilities, as well as supports that may help caregivers manage stressful situations in the context of COVID-19. Vaccination and testing protocols should be implemented to maximize family caregivers' opportunities for in-person contact with relatives in LTC, as alternative visiting modalities were often unsatisfactory or unfeasible. Informing caregivers regularly about individual residents' needs and status is crucial. Supports for bereaved caregivers should address complicated grief and feelings of loss.


Subject(s)
COVID-19 , Dementia , Caregivers/psychology , Dementia/psychology , Humans , Long-Term Care/psychology , Pandemics , SARS-CoV-2
20.
Arch Dis Child ; 107(3): e23, 2022 03.
Article in English | MEDLINE | ID: covidwho-1566337

ABSTRACT

OBJECTIVES: To explore the impact of the COVID-19 pandemic on the experiences of caregivers of children with tracheostomies. DESIGN: Qualitative semistructured interviews. SETTING: All participants were currently, or had previously cared for, a tracheostomised child who had attended a tertiary care centre in the North of England. Health professionals were purposively sampled to include accounts from a range of professions from primary, community, secondary and tertiary care. PARTICIPANTS: Carers of children with tracheostomies (n=34), including health professionals (n=17) and parents (n=17). INTERVENTIONS: Interviews were undertaken between July 2020 and February 2021 by telephone or video link. MAIN OUTCOME MEASURE: Qualitative reflexive thematic analysis with QSR NVivo V.12. RESULTS: The pandemic has presented an additional and, for some, substantial challenge when caring for tracheostomised children, but this was not always felt to be the most overriding concern. Interviews demonstrated rapid adaptation, normalisation and varying degrees of stoicism and citizenship around constantly changing pandemic-related requirements, rules and regulations. This paper focuses on four key themes: 'reconceptualising safe care and safe places'; 'disrupted support and isolation'; 'relationships, trust and communication'; and 'coping with uncertainty and shifting boundaries of responsibility'. These are described within the context of the impact on the child, the emotional and physical well-being of carers and the challenges to maintaining the values of family-centred care. CONCLUSIONS: As we move to the next phase of the pandemic, we need to understand the impact on vulnerable groups so that their needs can be prioritised.


Subject(s)
COVID-19/epidemiology , Caregivers/psychology , Parents/psychology , Tracheostomy , Adaptation, Psychological , Child , Humans , Pandemics , Patient Care Team , Professional-Family Relations , SARS-CoV-2 , Social Isolation , Social Support , Trust
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