What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study.

OBJECTIVES: The COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers. DESIGN: Our mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia. SETTING: The study took place in the South-East of England. PARTICIPANTS: Existing study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations. MEASUREMENT: Interviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis. RESULTS: 16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns. CONCLUSIONS: Our study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place.

Covid-19 and the quality of life of people with dementia and their carers-The TFD-C19 study.

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.

Patient experience and satisfaction with remote memory assessment: Responding to clinical need in times of COVID-19 restrictions.

BACKGROUND: The suspension of memory services during the COVID-19 pandemic delayed dementia diagnosis and access to early intervention. Some services responded to the challenge by developing a remote memory assessment pathway to comply with reduced social contact measures to protect vulnerable patients. The aim of the study was to establish whether remote model is considered a satisfactory experience within the context of the COVID-19 pandemic and to understand the factors associated with patient and carer satisfaction of remote pathway. METHOD: 73 participants recruited from patients referred to memory clinic in West Sussex, who were assessed over a video or telephone. Participants completed an 11-item questionnaire capturing satisfaction across a range of elements, contextual items (the impact of the pandemic, loneliness, previous experience of using teleconference technology and diagnosis), as well as 3 dimensions from Patient Experience Questionnaire. Descriptive statistics are reported at a whole sample level, separated by patient and carer status. A hypothesis driven set of bivariate analyses (Spearman's rank) was used to understand the association between overall satisfaction and key independent factors across the whole sample. RESULTS: 73 participants were typically older adults (M=68.5, SD=13.3) and female (n=40, 54.8%). The patient was more likely to be older, feel lonely within the past week and to have used video call software when compared to the carer (p> 0.05). Participants were generally satisfied with the remote pathway with 95.8% (n=69) agreeing or strongly agreeing with the statement "Overall, I was satisfied with the assessment". Patients and carers did not significantly differ on any satisfaction response, apart from the ease of use of technology, in which carers were more likely to find the technology easy to use (U= 432.5; p=0.01). Worry about contracting COVID and communication experience was positively associated with overall satisfaction, whilst perceived communication barriers were significantly negatively associated with overall satisfaction. CONCLUSIONS: Remote memory assessment was a positive and satisfactory experience for most patient and carers. The remote pathway should be considered as an option available during and beyond the pandemic to improve access and patient choice of assessment modality.

COVID-19 in LMICs: The Need to Place Stigma Front and Centre to Its Response.

COVID-19 has caused unprecedented health, economic and societal impacts across the world, including many low- and middle-income countries (LMICs). The pandemic and its fallout have laid bare deep-seated social and economic inequalities with marginalised groups being at greater risk of infection and being disproportionately affected by containment measures and their socioeconomic consequences. Stigma is a central element to such inequalities but remains largely overlooked in the debate on the response to COVID-19, including in LMICs. Yet we know from experiences with other infectious diseases such as HIV/AIDS and Ebola that disease-related stigma is detrimental to halting and controlling pandemics and achieving equitable development. Emerging evidence suggests that stigma associated with COVID-19 is already taking hold. This paper assesses potential driving factors of COVID-19-related stigma, and how this intersects with existing stigma fault lines and explores mechanisms through which COVID-19-related stigma may be counteracted, with a focus on LMICs.

La COVID-19 a eu un impact sanitaire, économique et sociétal sans précédent à travers le monde, y compris dans de nombreux pays à revenu faible ou intermédiaire (PRFI). La pandémie et ses retombées ont mis à nu de profondes inégalités sociales et économiques, les groupes marginalisés étant plus exposés au risque d'infection et étant touchés de façon disproportionnée par les mesures de confinement et par leurs conséquences socioéconomiques. La stigmatisation est au centre de ces inégalités mais reste largement négligée dans les débats sur la réponse à la COVID-19, y compris dans les PRFI. Grâce à l'expérience que nous avons sur d'autres maladies infectieuses telles que le VIH/SIDA et la maladie à virus Ebola, nous savons pourtant que la stigmatisation liée à une maladie empêche de contrôler et de stopper les pandémies et ne permet pas un développement équitable. De nouvelles preuves suggèrent que la stigmatisation associée à la COVID-19 gagne déjà du terrain. Cet article évalue les facteurs potentiels de stigmatisation liée à la COVID-19, analyse comment cela se recoupe avec les failles existantes de la stigmatisation et explore les mécanismes par lesquels on peut lutter contre la stigmatisation liée à la COVID-19, en mettant l'accent sur les PRFI.