Low care burden and high self-efficacy are essential for preparing family carers to care for people with dementia-findings from the TeleCareHub project

BackgroundThere is mounting evidence that difficulties with sleep including insomnia, sleep quality, and sleep fragmentation contribute to Alzheimer’s disease risk including formation of beta‐amyloid. Disrupted sleep is common in people with dementia (PWD). Primary unpaid caregivers (CGs) of PWD may also have disrupted sleep as a result of their caregiving roles. It is clear that CGs experience CG burden, stress and depression. The interplay of CG‐PWD dyads and the impact of behavior, cognition and sleep in the PWD on the CG are relatively understudied.MethodEight dyads consisting of individuals diagnosed with Alzheimer’s Disease (AD) (PWD) and their CGs were recruited from the Virginia Alzheimer’s Disease Center (VADC) Clinical Cohort. Diagnosis of AD in the VADC cohort was made by team consensus using neuroimaging, biomarker, neurological and neuropsychological data. All participants had wrist actigraphy measured for 14 days and overnight polysomnography (PSG) done in a sleep lab. Dyad members were in separate rooms during PSG.Dyads members independently completed the Montreal Cognitive Assessment 12, the Geriatric Depression Scale 13, Epworth Sleepiness Scale 14, and the Quality of Life in Alzheimer’s Disease scale 15 (QOL). CGs only completed the Preparedness for Caregiving Scale 16 and the Zarit Burden Interview and the Neuropsychiatric inventory.ResultNeither activity nor rest over 14 days differed within dyads. Relative to PWD, CGs experienced shorter total sleep, lower sleep efficiency, and longer sleep onset. CG and PWD depression and QOL did not differ between dyad members. Importantly, poorer CG sleep was associated with higher CG burden and greater PWD neuropsychiatric symptoms but not with degree of cognitive impairment in the PWD.ConclusionResults suggest that sleep in CGs can be more impaired than the PWDs they are caring for even when sleeping separately. Importantly, behavioral disturbance may be more problematic than PWD cognitive impairment level in CG sleep. These may have implications for ability to care for the PWD potentially impacting nursing home placement. Furthermore, PWD sleep characteristics may impact longer‐term CG health and well‐being.

As the disease progresses, people with dementia (PWDs) gradually lose their ability to conduct activities of daily living (ADLs) independently and increasingly rely on family caregivers (CGs) for assistance and support. This can lead to CGs experiencing increased burden. These dyadic processes may be manifested by (a) CGs' increased physical proximity to PWDs (reflecting greater needs for CGs to monitor PWD's needs and safety, and (b) CGs' increased movement (reflecting greater needs to assist PWDs with ADLs and taking on additional household responsibilities). Working with an industry partner, we developed a wearable watch that measured: (a) physical proximity between PWDs and CGs; and (b) movement of CGs and PWDs in their homes. In the current study, we examined how these wearable-based measures correlated with standard measures of PWD's ADLs and CG's burden. PWDs and CGs each wore a low-energy Bluetooth watch that provided long-battery-life (up to four months). The watches broadcasted information about proximity to three Bluetooth receivers placed in different rooms (which helped us determine the proximity between the PWDs and CGs) and used a three-axis accelerometer to determine movement on a second-by-second basis. In a nationwide US sample, 27 PWDs diagnosed with dementia or mild cognitive impairment and their co-residing familial CGs wore these watches over a six-month period. CGs also completed online questionnaires assessing PWDs' ADLs (Lawton Instrumental Activities of Daily Living) and their own perceived burden from caregiving (Zarit Burden Interview) at the beginning and the end of the study. Over the six-month period, greater increases in PWD-CG proximity were associated with greater increases in CG's burden (r = 0.57, p = .009). In addition, greater increases in CGs' (but not PWDs') movement were associated with greater decreases in PWD's ADLs (r = -0.55, p = .005). These wearable devices show promise of providing scalable remote measures that are associated with ADLs in PWDs and burden in CGs. Findings also underscore the dyadic nature of dementia caregiving, with assessments of CGs useful for understanding changes in ADLs in PWDs, and assessments of PWDs useful for understanding changes in burden in CGs.

Background Sleep difficulties in people with Alzheimer's disease (AD) and their caregivers (CGs) have been documented. Additionally, sleep disturbances are a risk for AD indicating that poor sleep in CGs may place them at risk for AD. Little is known about the relationship between sleep in people with dementia (PWD) and their CGs. Objective This pilot study examines sleep in PWD and CGs dyads, and the relationship between PWD sleep and CG sleep, cognition, and burden. We explore whether disordered sleep, degree of dementia and PWD behaviors are related to CG sleep difficulties and burden. Methods We examined sleep using overnight polysomnography (PSG) and day/night activity using 14-day actigraphy in PWD/CG dyads form the Virginia Alzheimer's Disease Center Clinical Cohort. Dyad members received the Montreal Cognitive Assessment (MoCA), behavioral and mood assessments. CGs completed CG burden and preparedness assessments. Results Mean activity from actigraphy did not differ within dyad members. PSG measurement of total sleep time (TST), sleep onset latency (SOL), sleep efficiency (SEff), and wake after sleep onset (WASO) revealed that CGs had significantly decreased TST compared to their PWD and experienced greater SOL. Lower PWD MoCA scores were unrelated to CG sleep. However, PWD neuropsychiatric symptoms and CG burden correlated with worse CG SOL. Conclusions Our findings suggest that chronic rest and activity are linked within dyad members and that when separated, CGs experience shorter TST, lower SEff, and longer SOL than their partners. Additionally neuropsychiatric symptoms and CG burden were associated with worse CG sleep.

Factors affecting quality of life (QOL) ratings for people with dementia (PWD) have been well studied, but few studies have examined the effect of residence on PWD- and caregiver-rated QOL for PWDs. We designed this study to determine the factors related to PWD- and caregiver-rated QOL in dementia as well as factors related to the discrepancy in these ratings. For this cross-sectional study, we analyzed data from a convenience sample of 106 PWD-family caregiver dyads (58 community-dwelling dyads and 48 nursing-home dyads). PWDs' data included socio-demographic variables, QOL (assessed by the Quality of Life-Alzheimer's Disease [QOL-AD] scale), cognition, dementia severity, depression, comorbidities, and quality of the dyadic relationship. Caregivers' data included socio-demographic variables, depressive symptoms, and mutuality of the dyadic relationship. QOL-AD scores were lower when rated by caregivers than by PWDs. The key factors positively related to both PWD- and caregiver-rated QOL for PWDs were fewer PWD depressive symptoms and higher quality of the PWD-caregiver relationship. The key factors related to the discrepancy in PWD- and caregiver-rated QOL in dementia were PWD residence in a nursing home and lower dementia severity, as well as higher caregiver depression, being an adult child caregiver, and lower caregiver-PWD mutuality. Caregiver-rated QOL for PWDs and the discrepancy in rated QOL were significantly associated with PWD residence. If caregiver-rated QOL is needed, the effect of residence of PWD should be taken into consideration. Caregivers' depressive status and mutuality with PWD must be also carefully assessed.

Spinal Cord Injury/Disorder Function, Affiliate Stigma, and Caregiver Burden in Turkey.

Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours

Background Dementia presents a public health priority due to its high global prevalence, mortality, economic cost, and caregiver burden (CB). Dementia care can be stressful and may negatively influence the health of informal caregivers. This cross-sectional study aimed to identify psychological and social factors associated with subjective CB in informal home care providers of people with dementia (PwD), controlling for sociodemographic, clinical, and care-related variables. Methods We included 115 informal caregivers of PwD from community settings (mean age: 54.0±12.4 years; 81.7% women). Participants fulfilled the Zarit Burden Interview (ZBI-12), the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), the Family APGAR, and the short IQCODE used to assess dementia severity. Multiple linear analyses were used to analyse the data. Results The mean caregiving duration was 4.8±4.8 years, and 55.7% of informal caregivers extend care for >40 hours/week. We found that a total of 52.5 % of informal caregivers experienced a high CB (ZBI-12 cut-off score: 17). Univariate analyses showed an association between depression (β = 0.36; p < 0.001), anxiety (β = 0.52; p < 0.001), family dysfunction (β = 0.36; p < 0.001), and CB. Regression analyses showed that CB was the most strongly associated with anxiety (β = 0.51; p < 0.001). This association weakened (0.47; p < 0.01) when family function was added to the final model (β=-0.22; p < 0.05). The final model explained 23.5% of the variance in CB. No associations between the caregiver's age, sex, caregiving duration, the extent of care per day, use of community care, dementia severity, and depression were identified. Conclusions Long-term care for people living with dementia can be very demanding. Thus, the implementation of tailored interventions to enhance family function and diminish psychological distress can mitigate level of caregiver burden. [Grant support: APVV-22-0587]. Key messages • Dementia caregiving is a global public health priority. • The caregiver’s burden and distress can be alleviated by the interventions focusing on family dysfunction.

Factors associated with burden among male caregivers for people with dementia.

Moderated Mediation Path Analysis of Mexican Traumatic Brain Injury Patient Social Functioning, Family Functioning, and Caregiver Mental Health

BackgroundNeuropsychiatric disturbances are common manifestations of dementia disorders and are associated with caregiver burden and affiliate stigma. The present study investigated affiliate stigma and caregiver burden as mediators for the association between neuropsychiatric symptoms of people with dementia (PWD) and caregiver mental health such as depression and anxiety.MethodsA cross-sectional survey study was carried out with 261 dyads of PWD and informal caregivers from the outpatient department of a general hospital in Taiwan. The survey included the Caregiver Burden Inventory (CBI), the Affiliate Stigma Scale (ASS), the Taiwanese Depression Questionnaire (TPQ), and the Beck Anxiety Inventory (BAI). Mediation models were tested using the Hayes’ PROCESS macro (Model 4 for parallel mediation model; Model 6 for sequentially mediation model).ResultsCaregiver burden, affiliate stigma, caregiver depression, and caregiver anxiety were significantly associated with neuropsychiatric symptoms. After controlling for several potentially confounding variables, it was found that PWD’s neuropsychiatric symptoms, caregiver burden and affiliate stigma significantly explained 52.34% of the variance in caregiver depression and 37.72% of the variance in caregiver anxiety. The parallel mediation model indicated a significantly indirect path from PWD’s neuropsychiatric symptoms to caregiver mental health through caregiver burden and affiliate stigma, while the direct effect was not significant. Moreover, there was a directional association between caregiver burden and affiliate stigma in the sequential mediation model.ConclusionsThese findings show that it is imperative to improve caregivers’ perception of those with dementia to reduce internalized stigma and to improve caregivers’ mental health. Implementation of affiliate stigma assessment in clinical practice would allow distinctions to be made between the impact of affiliate stigma and the consequences of caregiver burden to help inform appropriate intervention.

Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the ‘CHESS’ research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman’s correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.

BackgroundFamily and friend caregivers of people with dementia (PwD) experience high distress, but have minimal access to support beyond education. Understanding interventions’ comparative efficacy at improving their mental health is critical.MethodWe searched MEDLINE, Embase, CENTRAL, CINAHL, PsycINFO, and grey literature from inception until June 13, 2024, for randomized trials (RCTs) comparing any intervention to usual care or other interventions for improving quality of life, burden, distress, or depression or anxiety symptoms in PwD's family or friend caregivers. Independent reviewer pairs conducted study screening, data abstraction, and risk of bias appraisal. We derived standardized mean differences from random‐effects network meta‐analysis; back‐transformed mean differences (MD) on the World Health Organization Quality of Life Scale (psychological health), Zarit Burden Interview, Neuropsychiatric Inventory (distress), Center for Epidemiologic Studies Depression Scale, and Hospital Anxiety and Depression Scale (anxiety) to describe quality of life, burden, distress, and depression and anxiety symptom changes, respectively; and probabilities of exceeding each scale's minimum important difference (pMID).ResultWe included 196 RCTs (83 interventions; 27,210 caregivers); 63.8% were at high risk of bias from missing data. Compared to education, psychotherapy (MD 17.4, 95% credible interval 3.5 to 31.7; pMID 95.1%) improved quality of life; education+training (‐6.4, ‐12.2 to ‐0.9; 57.8%) and caregiver/PwD exercise (‐13.1, ‐26.2 to ‐0.2; 85.9%) improved burden; mindfulness (‐8.3, ‐12.9 to ‐3.9; 97.6%) and case management+education (‐6.9, ‐13.0 to ‐0.3; 82.7%) improved distress; education+psychotherapy+support (‐35.3, ‐44.8 to ‐25.5; 100%), education+training (‐4.0, ‐6.2 to ‐1.7; 42.9%), education+psychotherapy (‐11.8, ‐21.0 to ‐2.6; 94.4%), mindfulness (‐5.1, ‐9.0 to ‐1.1; 66.4%), caregiver/PwD education (‐23.4, ‐35.9 to ‐9.9; 99.6%), respite care+education+support (‐23.1, ‐40.2 to ‐5.5; 98.2%), education+training+perspective‐taking (‐10.6, ‐20.7 to ‐0.6; 89.6%), and education+journaling+psychotherapy (‐7.0, ‐12.9 to ‐1.3; 83.5%) improved depressive symptoms; and education+training+psychotherapy (‐2.2, ‐3.7 to ‐0.8; 81.4%), education+support+training (‐3.1, ‐5.6 to ‐0.7; 89.0%), exercise+meditation (‐5.9, ‐9.2 to ‐2.7; 99.4%), cognitive behavioural therapy+support (‐15.4, ‐19.6 to ‐11.1; 100%), caregiver/PwD counselling (‐2.6, ‐5.2 to ‐0.1; 79.8%), and education+support+psychotherapy (‐7.2, ‐9.8 to ‐4.6; 100%) improved anxiety symptoms.ConclusionIntervention combinations, with or without education, were more efficacious than education alone at improving mental health of PwD's family and friend caregivers.

BackgroundAlmost two‐thirds of people with dementia (PwD) living at home receive care from a family or other informal caregiver. For the caregiver this can result in a work load comparable or above a full‐time employment position. Evidence shows that family caregivers have a higher risk for psychiatric and non‐psychiatric diseases like depression, anxiety, and arterial hypertension compared to non‐caregivers. A dyadic approach on disease management and the assessment of unmet needs can help to reduce the burden of care and increase the quality of life of caregivers and PwD. The cluster randomized “Gesund Angehörige Pflegen” (GAIN) trial conducted in general practitioner (GP) practices and memory clinics in Northern Germany aims to evaluate the effectiveness of a digitally supported care management programme to reduce unmet needs of informal caregivers of PwD.MethodThe recruitment for the GAIN trial began in October 2020 and will end in January 2022 with an estimated sample size of n = 200 caregiver. The GAIN baseline assesses the caregiver’s self‐reported unmet needs (Camberwell Assessment of Need for the Elderly, CANE), health‐related quality of life (EQ‐5D‐5L), caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non‐medical services and resource utilisation.ResultA blinded interims data quality control analysis (n = 86) documented 10.45 unmet needs on average, 4.55 unmet needs for the caregivers and 5.9 unmet needs connected to the PwD triggering a maxium of 8 suggested interventions per unmet need. These results are higher compared to the previous studies on unmet needs of dementia caregivers. The recruitment for the trial is currently still ongoing. Complete baseline results will be presented at the conference.ConclusionThe use of a tablet‐based expert assessment system in memory clinics or GP praxis to identify unmet needs is well feasible. Caregivers of PwD recruited at GPs or memory clinics for the GAIN trial report a high number of unmet needs indicating the importance of a structured and in‐depth assessment to allow a personalized and dyadic treatment of family caregivers and PwD.

Introduction : In 2013, Genio, a non-governmental agency, provided innovative two year funding to develop individualised supports for people with dementia (PwD) and their informal carers in the community. This paper aims to report on the evaluation of an integrated care model in two community settings in Ireland, with a focus on the innovative supports provided. Methods : Data were collected pre- and post-implementation of individual supports. A mixed methods approach was employed and included the following: service providers’ awareness and knowledge of dementia; survey and interviews with PwD and informal carers about their experiences of community dementia care, interviews with service providers about their experience of community dementia care, and an economic analysis. Ethical approval was secured from the Faculty of Health Sciences Research Ethics Committees in Trinity College Dublin and relevant Ethics Committees in the services. Results : Results are based on data collected at two time points from service providers and PwD and informal carers. Service providers demonstrated reasonably high levels of dementia awareness and knowledge. For PwD and informal carers, the most valuable source of support was the provision of flexible, individualised home support hours. These benefits outweighed the provision of assistive technology and carer respite (weekend away for the informal carer). There was a range of positive outcomes reported by/on behalf of PwD and informal carers e.g. provision of additional home support hours when ‘mainstream’ supports were unavailable (overnight, at weekends etc), relief of carer burden, and satisfaction with facilitation of input into the selection of hours. Discussion : Tensions arose in the mainstreaming of additional hours provided by the project due to budgetary constraints within the health service and the limitations of existing community care services. The sustainability of project gains must be considered in the context of broader national developments. Conclusions (comprising key findings): Responsive care is best provided within a person-centred, relational care approach in order to acknowledge and respond to the needs of the PwD and informal carer dyad in the provision of dementia care services. Provision of additional, flexible home support hours was of the greatest benefit to informal carers in terms of support, and relief of carer burden. A re-conceptualisation of the provision of community care services would be required in order for project outcomes to be maintained and for the project ethos to continue. Suggestions for future research : This research focused on those with advanced dementia. It would be valuable in future research to further explore the implementation of responsive care for PwD and their informal carers in the community across all stages of the dementia journey. It would also be useful to examine how assistive technology might better support PwD and their informal carers in advanced dementia.

BackgroundCaregiving for people with mental illness (PwMI) could be burdensome, especially for informal caregivers. However, there is a scarcity of research investigating caregiving burden among informal caregivers of PwMI in China at the national level. To fill this gap, this study examined the prevalence of caregiving burden, depression, and anxiety, as well as their associated factors, among a cross-sectional sample of informal caregivers of PwMI in China.MethodsData were collected via an online survey between June and November 2023. Caregiving burden, depression, and anxiety were measured by the Zarit Burden Interview, the Patient Health Questionnaire, and the Generalized Anxiety Disorder Scale. Information on caregivers’ sociodemographic, care recipients’ sociodemographic and disease-related, and caregiving-related characteristics was also collected. Hierarchical regression analyses were performed to identify associated factors of caregiving burden, depression, and anxiety.ResultsA total of 1,224 informal caregivers of PwMI in China were included in the final analysis. 72.1% of the participants had high caregiving burden, 53.5% had moderate to severe depression, and 43.1% had moderate to severe anxiety. Caregiving burden, depression, and anxiety were inter-correlated with each other but exhibited different profiles of associated factors. The most important factors associated with all the three outcomes were disease-related characteristics, particularly care recipients’ symptom stability, medication compliance, and insight. Informal caregivers of males with mental illness had higher levels of caregiving burden, depression, and anxiety than those of females. There was a lack of differentiation in caregiving burden, depression, and anxiety based on care recipients’ diagnosis. Formal or common-law marriage was a protective factor for caregiver depression and anxiety but not for caregiving burden.ConclusionInformal caregivers of PwMI in China experienced a high level of caregiving burden, depression, and anxiety. Urgent actions are needed to relieve caregiving burden, depression, and anxiety among informal caregivers of PwMI in China.