Family Carers Of People Research Articles

Identification of Barriers and Facilitators to the Use of a New Pain Assessment Mobile Health Application by Family Carers of People with Dementia: A Qualitative Study

This study identified potential barriers and facilitators to the implementation of a medical device in the form of a mobile health (mHealth) application, (app) called PainChek®, by family carers of individuals with dementia in the Australian community setting. Focus groups and a phone interview took place with family carers and healthcare professionals. Data were analysed thematically. 6 family carers and 8 healthcare professionals participated across 2 focus groups and 1 phone interview. Themes related to the user, innovation/PainChek®, and contextual factors were identified. Barriers to use included age, physical limitations, cost, technical issues, misinterpretation of how PainChek® works, and influence of family. Facilitators included a willingness to use mHealth Apps and previous experience. Some themes acted as both barriers and facilitators depending on the situation such as the healthcare team's acceptance. Targeted interventions and support strategies, leveraging facilitators are essential to overcome barriers related to user, intervention, and context and to enhance successful PainChek® implementation, thereby improving pain management in individuals with dementia. Future research is recommended to develop effective implementation strategies to utilise the facilitators and overcome the barriers to improve the implementation of PainChek®.

Development and validation of a self-esteem improvement program for family caregivers with dementia ‐ Utilizing ICT

The sense of caregiving burden can be significant among family caring for people with dementia and can impact mental health. Research to find ways to alleviate this burden is extremely important. Dr Yoshihiro Saito, Faculty of Nursing, Reiwa Health Sciences University, Japan, is leading a team working to develop and validate a self-esteem improvement programme designed for family caregivers of those with dementia. The project was inspired by Saito experiencing firsthand the stresses placed on family carers of people with dementia. The goal of the programme is to reduce the self-blame of dementia family caregivers and is informed by Saito’s expertise in cognitive behavioural therapy. A key part of the programme is self-compassion in order to help caregivers realise their worth. Ultimately, the aim is that, through the programme, caregivers can be kinder to themselves and realise the value and significance of their efforts. Alongside heading up this project, Saito is a supervisor for the Cognitive Behavioural Therapy Training Programme of the Ministry of Health, Labour and Welfare in Japan, focusing on popularising cognitive behavioural therapy and training the next generation. In this role, he listens to and reviews recordings of cognitive behavioural therapy sessions, providing practical advice. In the context of Japan’s ageing population, there will be an increase in people with dementia and family caregivers. Therefore, Saitoâ–™s work will be hugely beneficial in assisting those with dementia, caregivers and society.

Motivators for family carers of persons with dementia in Kenya.

The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

'Caring beyond capacity' during the coronavirus pandemic: resilience and family carers of people with dementia from the IDEAL cohort.

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study was to explore seven family carers' accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and 'caring beyond capacity' due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

Effects of Acceptance and Commitment Therapy (ACT) group intervention for the treatment of anxiety in family carers of people with dementia: an exploratory randomised controlled trial

AbstractBackgroundThe prevalence of anxiety symptoms is estimated to be equal to or higher than the prevalence of depressive symptoms in family carers of people with dementia. However, anxiety is currently somehow neglected in the carer literature. Previous studies demonstrated that Acceptance and Commitment Therapy (ACT) is effective for treating anxiety symptoms in family carers of people with dementia, but these studies were mainly conducted in developed countries. The current study explored the effectiveness of an ACT group intervention on the anxiety symptoms in Brazilian family carers of people with dementia.MethodA single‐centre, unblinded, double‐arm exploratory randomised trial was conducted. Fifty‐seven family carers of people with dementia presenting with mild to severe anxiety symptoms were randomised to the intervention group (n = 29) or waiting list group (n = 28). The intervention group received eight weekly sessions of Group ACT, delivered through videoconference. Participants completed the measure of anxiety and depressive symptoms, caregiver burden, psychological flexibility and quality of life at Week 0, Week 9 and Week 20. Multiple linear regression analyses were performed to evaluate whether there was a significant difference in scores between the intervention and control groups, at week 9 and week 20, while controlling for the baseline scores using both intention‐to‐treat and completers data analyses.ResultParticipants were mostly women, from low‐ to middle‐income socioeconomic levels, with a mean age of 52 years and median education of 15 years. Participants in the intervention group had lower scores of anxiety and depression symptoms compared to participants in the control condition at weeks 9 and 20 in both the intention‐to‐treat and completer analyses. Only participants who attended six or more sessions (i.e. completer sample) demonstrated reduced caregiver burden at both follow‐up points. The completer sample also showed improvement in quality of life at week 9. The results did not show any effect of the intervention on psychological flexibility.ConclusionThis study provides evidence supporting the use of group ACT, delivered through videoconference, with family carers of people with dementia to help them cope better with anxiety and depressive symptoms.

P80: Implicit emotional ambivalence and emotional distress in family carers of people with dementia: Exploratory study.

Objective:Caring for a relative with dementia is a chronic stress situation related to negative consequences such as elevated depressive and anxiety symptoms. A possible mediator variable explored to explain pathways from chronic stress to emotional distress is emotional ambivalence towards the care-recipient (the simultaneous experience of positive and negative feelings towards the care-recipient). Emotional ambivalence, measured with questionnaires, presents significant associations with depression and anxiety in family carers of people with dementia. However, the self-report of emotional ambivalence is susceptible to being influenced by social desirability. The aim of this study is to present preliminary results that analyze implicit ambivalence and its association with emotional distress in family carers of people with dementia.Methods:54 caregivers participated in the study (mean age = 61.2, SD = 12.92, 81.5% women). To explore implicit emotional ambivalence, we adapted a sequential priming paradigm developed to measure implicit ambivalence about significant others (Zayas & Shoda, 2015). Two priming stimuli were used: a) neutral (e.g., RRR) and b) valenced prime (i.e., the name of the care-recipient). The targets were positive and negative words that participants have to categorize as positive or negative.Results:A facilitation-inhibition indexes for positive and negative targets were calculated by subtracting the mean reaction time (RT) for valenced prime from the mean RT for neutral primes. Positive values show a facilitation effect of the valenced prime (i.e., the name of the care-recipient), and negative values inhibition. Participants were classified depending on their results of this indexes: a) positive (facilitation of positive information, inhibition of negative information), b) negative (facilitation of negative information, inhibition of positive information), c) flat (inhibition of positive and negative information), and d) ambivalence (facilitation of positive and negative information). ANOVAS were performed to explore differences between groups in emotional distress. The preliminary results showed that the ambivalence group might present more depressive symptoms compared with the positive group.Conclusion:This is the first study that analyzed implicit ambivalence in family carers of people with dementia. The preliminary results show the relevance of exploring implicit processes to explain emotional distress in this population.

The role of experiential avoidance and cognitive fusion in the development of anxiety symptoms among family carers of people with dementia

AbstractBackgroundDespite the high prevalence of anxiety symptoms among family carers of people with dementia (Kaddour & Kishita, 2020), current carer interventions are considered to be not as effective for anxiety as they are for depression (Kishita et al., 2018). Therefore, understanding the mechanism by which a common stressor (i.e. carer subjective burden) and underlying psychological processes influence anxiety symptoms among this population is critical to inform future interventions. In this study, the roles of two psychological processes known to be associated with mental health problems were explored: experiential avoidance in caregiving (an attempt or desire to control or suppress distressing thoughts and feelings related to caregiving) and cognitive fusion (the tendency for one’s behaviour to be overly regulated and influenced by thoughts).MethodWith a sample of seventy‐seven family carers (mean age of 63.47 years (SD = 10.64) and 73% female), this study examined the indirect effect of carer subjective burden (ZBI‐12) on anxiety symptoms (GAD‐7) through experiential avoidance in caregiving (EACQ) and cognitive fusion (CFQ) using a path analysis approach.ResultThe whole sample model showed a good fit to the data. The indirect effect of carer subjective burden on anxiety symptoms through its effect on cognitive fusion (β = .17), and its combined effect on experiential avoidance in caregiving and cognitive fusion (β = .01) were significant. Examined variables accounted for 54% of the variance in anxiety symptoms.ConclusionGiven the higher explanatory value demonstrated for the indirect effect of cognitive fusion alone, facilitating cognitive fusion through psychological interventions may be critical for preventing clinically significant levels of anxiety symptoms, particularly among those carers experiencing high levels of carer subjective burden. The results also demonstrated that family carers with higher experiential avoidance in caregiving may be prone to cognitive fusion, which in turn could lead to higher levels of anxiety symptoms. Therefore, an early intervention targeting experiential avoidance may be beneficial for preventing increased cognitive fusion and anxiety symptoms.

Clinical effectiveness of the NIDUS randomised control trial of a tailored, goal‐focused intervention for increasing goal attainment in people living with dementia and their family carers

AbstractBackgroundMost people living with dementia want to remain living in their own homes and are supported to do so by family carers. We have co‐produced, with family carers of people with dementia and health and social care professionals, a psychosocial intervention (NIDUS‐family). NIDUS‐family is the first fully manualised intervention that is tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals.MethodA randomised, two‐arm, single‐blind, multi‐site clinical trial involving 302 people living with dementia‐family carer dyads. Dyads were randomised 2:1 to receive the NIDUS‐family intervention with usual care (n = 204) or usual care alone (n = 98). The intervention group received over 1 year, 6‐8 video call or telephone sessions (or face to face if COVID‐19 restrictions allowed) in the initial 6 months, followed by telephone follow‐ups every 1‐2 months to support implementation, with a trained facilitator. We will evaluate the effect of NIDUS‐family and usual care on attainment on goals set by family carers towards the care recipient living as well as possible at home, as measured by Goal Attainment Scaling (GAS), compared to usual care alone at 12‐month follow‐up. Secondary outcomes measures include functioning, neuropsychiatric symptoms of care recipients, time remaining living at home and care costs, and family carer mood, quality of life and reported abusive behaviours.ResultThe trial recruited to target, with good adherence to the intervention (85% fully adherent) and trial retention to date (87% at 6‐month follow‐up). The trial’s 12 month follow up data will be completed in early May 2023 and results will be analysed and ready to share by July 2023.ConclusionOur intervention, which we adapted to include remote delivery prior to commencement due to the COVID‐19 pandemic, aims to address barriers to living as well and as independently as possible. If effective, NIDUS‐family is potentially scalable to benefit many people living with dementia and their family carers.

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Does Avoiding Distressing Thoughts and Feelings Influence the Relationship between Carer Subjective Burden and Anxiety Symptoms in Family Carers of People with Dementia?

Anxiety remains understudied in family carers of people with dementia. Understanding factors that moderate the relationship between stressors and anxiety symptoms in this population is critical to inform interventions. This study examined whether generic experiential avoidance (AAQ-II) and experiential avoidance specific to caregiving-related thoughts and feelings (EACQ) moderate the relationship between subjective burden (ZBI-12) and anxiety symptoms (GAD-7) in carers of people with dementia. The first model (R2 = .66, ∆R2 = .03) exploring the moderating effect of AAQ-II demonstrated a significant interaction term between AAQ-II and subjective burden. The second model (R2 = .53, ∆R2 = .03), exploring the moderating effect of EACQ, demonstrated a significant interaction term between EACQ and subjective burden. These results provide evidence that carers with higher levels of experiential avoidance may be particularly prone to the negative effect of subjective burden on anxiety symptoms. Clinical implications for assessment of experiential avoidance and its treatment in carers of people with dementia are discussed.

Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19.

The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the 'digital divide' and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long-term care planning during the COVID-19 pandemic.

Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands. Twenty-five semi-structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. Family carers were recurrently concerned with long-term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID-19 pandemic reinforced awareness of long-term care planning and moved some to action. The perceived urge to plan by family carers has grown due to the COVID-19 pandemic. The current study provides valuable insights for stakeholders to support them in this.

Views and experiences on the use of voice assistants by family and professionals supporting people with cognitive impairments.

The use of voice assistants (e.g., Amazon Alexa, Google Home) is being widely advocated as part of supporting people living with dementia at home. The development of this technology is largely driven by industry, and there is little research to determine how family carers and professionals use voice assistants with people with dementia. This paper presents the findings from further analysis of data from two studies: Study 1-a qualitative study that aimed to explore the views and expectations of family carers and professionals who use voice assistants to support people with a cognitive impairment at home, and Study 2-a qualitative enquiry aiming to identify the views and barriers on using voice assistants by family carers of people with dementia and professionals, together with a pilot case study evaluating a prototype that addresses barriers identified during the enquiry, entitled IntraVox. Based on processing of smart home sensor data, IntraVox uses a personalised human voice to send prompts and reminders to end-users to conduct daily life activities and to activate smart home processes using voice assistants. The results of the qualitative studies indicate that family carers and professionals use voice assistants in their caring role for home automation, skills maintenance and development, prompts and reminders, behaviour and environment monitoring, and for leisure and social interaction support. The findings also show that family carers and professionals have specific challenges that need to be overcome for them to realise the benefits that may be gained through the use of voice assistants within technology enabled care. The pilot case study also provided a useful demonstration that interoperability can be achieved to enable exchanges between IntraVox and voice assistants, with the aim of providing customised and personalised technological solutions that address some of the barriers that people with dementia and their carers face in the use of this technology.

Family Carers of People with Dementia in Japan, Spain, and the UK: A Cross-Cultural Comparison of the Relationships between Experiential Avoidance, Cognitive Fusion, and Carer Depression.

Objective and research design This study investigated whether the relationship between experiential avoidance and carer depression is mediated by cognitive fusion using path analysis and whether this model differs between family carers from Japan, Spain, and the UK using multi-group path analysis. Results The whole sample model (N= 745) showed a good fit to the data. The direct effect of experiential avoidance on carer depression (β= .10) and its indirect effect on carer depression through cognitive fusion (β= .15) were significant. Examined variables accounted for 45% of the variance of depression. Multi-group path analysis confirmed the same pattern of indirect path across 3 countries, while the direct path was no longer significant in Spanish and UK samples.Conclusion These findings suggest that targeting cognitive fusion may be particularly critical in culturally diverse carers and pre-emptive efforts to reduce experiential avoidance using psychological techniques may be beneficial among family carers prone to cognitive fusion regardless of cultural differences.

Commentary on “Brief report on six clinical cases of trauma in families who have children and adults who have a learning disability and/or are autistic”

PurposeThe purpose of this commentary is to explore some of the research on family carers of people who have a learning disability and/or are autistic.Design/methodology/approachThe approach is a narrative commentary.FindingsFamily carers of people who have a learning disability and/or are autistic may have needs related to mental health and well-being; however, formal systems of support and resources are limited.Originality/valueThe commentary explores and integrates perspectives from international research findings to provide a context/background of broader literature in which the paper by Blackman et al., is situated.

Cancer treatment decisions for people living with dementia: Experiences of family carers, a qualitative interview study.

BackgroundAs the UK population ages, the prevalence of both dementia and cancer will increase. Family carers of people with dementia who are subsequently diagnosed with cancer are often involved in treatment decisions about cancer. These decisions are uniquely challenging.ObjectivesTo explore the experience of carers involved in cancer treatment decisions for people with dementia.DesignA cross‐sectional qualitative interview study with inductive thematic analysis.Setting and ParticipantsSixteen carers of people with dementia were identified via Primary Care Research Networks and the Join Dementia Research database.ResultsThree main themes were derived: ‘already at breaking point’, which describes the extreme strain that carers were already under when the cancer diagnosis was made; ‘maintaining the status quo’, which describes how despite the gravity of a cancer diagnosis, avoiding further dementia‐related deterioration was of prime importance; and ‘LPA’, which explores the benefits and frustrations of the use of lasting powers of attorney.DiscussionCurrent services are ill‐equipped to deal with people who have a combination of dementia and cancer. Proxy decisions about cancer care are made in the context of carer stress and exhaustion, which is exacerbated by shortcomings in service provision.ConclusionsAs the prevalence of comorbid cancer and dementia rises, there is an urgent need to improve services that support carers with proxy health care decision‐making.Patient or Public ContributionThe study design was codeveloped with a local dementia‐specific patient and public involvement (PPI) group. A project‐specific PPI group was formed with support from the Alzheimer's Society Research Partnership scheme to provide further bespoke input.

Telephone-based aftercare groups for family carers of people with dementia \u2013 results of the effect evaluation of a randomised controlled trial

BackgroundThe care of people with dementia is associated with enormous stress and, in a quarter of cases, leads to depression and anxiety disorders in the caring relatives. A specially designed inpatient psychosomatic rehabilitation (rehab) programme for family carers of people with dementia has proven to be effective but not sustainable. Therefore, the present study aims to increase the sustainability of the inpatient rehab programme by using thematically structured telephone aftercare group sessions.MethodsThe effectiveness of telephone aftercare groups was investigated in a randomized, controlled, prospective, mixed methods, longitudinal study. The aftercare intervention included social participation in monthly telephone group sessions for 6 months. The primary outcome was increased social participation of family carers, which, like the secondary outcomes (such as quality of life and subjective health), was assessed in written surveys at three or four measurement points.ResultsComplete data from 69 participants from the intervention group and from 72 participants from the control group could be evaluated. A small-sized reduction in restrictions on social participation was observed in the intervention group, whereas the reduction in the control group was negligible. The repeated-measures analysis of variance (ANOVA) showed sustained effects on the secondary outcomes, such as depression, perceived social support, and the mental health domain of quality of life of family carers, in favour of the intervention group. The results also showed that telephone-based aftercare groups had a rather minor influence on the use of support services. Except for those from family, friends and neighbours, existing support offers were hardly used.ConclusionTelephone aftercare group sessions for carers of people with dementia were not able to increase social participation at the expected magnitude. Nevertheless, the clear effects on selected secondary health-related outcomes and the assessment of the telephone-based group sessions by the participants show that the caring relatives were able to benefit greatly from this aftercare measure. Family carers should be informed more extensively about the corresponding resources and encouraged to use them. Overall, this new aftercare concept can be recommended for implementation, and its use also seems to be target-oriented for other indications.Clinical trial registrationGerman Clinical Trials Register: DRKS00013736, 14/05/2018.

Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia.

BackgroundWhen family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death.MethodsThis was a mixed methods cross-sectional study. Family carers of people with dementia (n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample (n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data.ResultsWe addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer.ConclusionsWhile most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.

Caregivers of people with dementia and mental health during COVID-19: findings from a cross-sectional study

BackgroundThere is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic.MethodsWe conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3).ResultsCaregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001).ConclusionsWe found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

Examining the carer‐related and patient‐related factors predicting anxiety amongst family carers of people with dementia

AbstractBackgroundAnxiety in family carers of people with dementia has been neglected in research, although its prevalence may be similar or even greater to that of depression. The current literature has also demonstrated that existing interventions tend to be less effective for anxiety than for depression or burden in family carers. Therefore, it is important to identify factors affecting carer anxiety to inform the development of future interventions. The aim of this study was to determine which carer‐related (age, gender, hours of caring per week, comorbidities, sleep quality) and patient‐related (dementia severity based on functional deterioration, neuropsychiatric symptoms of dementia) factors known to have an impact on carer wellbeing predict anxiety amongst family carers of people with dementia.MethodThis study used a cross‐sectional design with a sample of ninety‐one family carers, with a mean age of 69.46 years old. More than 65% of carers were female and were living together with the care recipient. Most of care recipients were in the severe stages of Alzheimer’s disease. First, a single regression analysis with each potential independent variable was conducted. The independent variables that passed a certain p‐value threshold (carer age, carer gender, hours of caring per week, sleep quality, neuropsychiatric symptoms) were then included in the final multiple regression model. Due to significant multicollinearity, dementia severity was excluded from the final regression model.ResultThe final regression model (R²=0.29) demonstrated that the numbers of hours providing care (β=.24) and sleep quality (β=.28) had a significant impact on carer anxiety.ConclusionProviding more hours of care per week and having worse sleep quality seem to predict higher levels of anxiety in family carers. Studies exploring factors, which could moderate the impact of hours of caring and sleep quality, may further guide future interventions. The relationship between sleep quality and anxiety also requires attention as some studies have reported that sleep quality may be bidirectionally related to anxiety. That is, successful treatment of sleep disturbances may prevent exacerbation of anxiety and vice versa. Future research should further investigate the impact of sleep quality in family carers, ideally using a longitudinal design.