Caregiver Quality Research Articles

Peer support-based online education, burden of care and quality of life among family caregivers of patients with leukaemia: non-randomised clinical trial

ObjectiveThe responsibility of caring for patients with leukaemia places a heavy burden on family caregivers (FCs) and negatively impacts their quality of life (QoL). This study aimed to investigate the...

Longitudinal Care Network Changes and Associated Healthcare Utilization Among Care Recipients.

This study examines caregiver networks, including size, composition, and stability, and their associations with the likelihood of hospitalization and skilled-nursing facility (SNF) admissions. Data from the National Health and Aging Trends Study linked to Center for Medicare and Medicaid Services data were analyzed for 3855 older adults across five survey waves. Generalized estimating equation models assessed the associations. The findings indicate each additional paid caregiver was associated with higher adjusted risk ratios (aRR) for hospitalization (aRR = 1.24, 95% CI 1.10-1.41) and SNF admission (aRR = 1.28, 95% CI 1.06-1.54) among care recipients, a pattern that is also observed with the addition of unpaid caregivers (hospitalization: aRR = 1.13, 95% CI 1.06-1.20; SNF: aRR = 1.12, 95% CI 1.02-1.23). These results suggest that policies and approaches to enhance the quality and coordination of caregivers may be warranted to support improved outcomes for care recipients.

Mediating effect of social support between caregiver burden and quality of life among family caregivers of cancer patients in palliative care units

PurposeTo identify factors influencing the quality of life of family caregivers with terminal cancer in Chinese palliative wards and to test whether social support mediates the relationship between caregiver burden and caregiver quality of life. MethodsA cross-sectional study design was used. Sociodemographic data were collected and the Quality of Life Scale, the Caregiver Burden Scale, and the Social Support Rating Scale were administered to Chinese family caregivers from December 2021 to December 2022. The factors influencing quality of life and caregiver burden were examined using the Mann‒Whitney U test and the Kruskal‒Wallis H test. The mediating role of social support was assessed using the bootstrap method. ResultsFamily caregivers' quality of life in Chinese terminal cancer palliative units was related to caregivers' daily care time, the caregiver-patient relationship, and patient age. Caregiver quality of life was negatively associated with caregiver burden and positively associated with social support. In addition, social support mediated the relationship between caregiver burden and caregiver quality of life. ConclusionSocial support mediated the impact of caregiver burden on caregiver quality of life. Family, society, and palliative care institutions should be integrated to take actions to reduce family caregiver burden, increase social support, and transfer the positive aspects of specific cultural contexts to the culture of palliative care in general to collaboratively cope with various problems related to end-stage cancer.

Feasibility of in-home electroencephalographic and actigraphy recordings in dogs.

Idiopathic epilepsy is a prevalent neurological disease in dogs. Dogs with epilepsy often present with behavioral comorbidities such as aggression, anxiety, and fear. These behaviors are consistent with pre, post, or interictal behaviors, prodromal changes, seizure-precipitating factors, or absence and focal seizures. The overlap in behavior presentations and lack of objective research methods for quantifying and classifying canine behavior makes determining the cause difficult. Behavioral comorbidities in addition to the task of caring for an epileptic animal have a significant negative impact on dog and caregiver quality of life. This pilot study aimed to assess the feasibility of a novel technology combination for behavior classification and epileptic seizure detection for a minimum 24-h recording in the dog's home environment. It was expected that combining electroencephalography (EEG), actigraphy, and questionnaires would be feasible in the majority of trials. A convenience sample of 10 community-owned dogs was instrumented with wireless video-EEG and actigraphy for up to 48 h of recording at their caregiver's home. Three questionnaires (maximum 137 questions) were completed over the recording period by caregivers to describe their dog's everyday behavior and habits. Six of the 10 included dogs had combined EEG and actigraphy recordings for a minimum of 24 h. This shows that in-home EEG and actigraphy recordings are possible in community-owned dogs and provides a basis for a prospective study examining the same technology combination in a larger sample size.

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review.

During the transition to adulthood, individuals diagnosed with intellectual disability (ID) and their family caregivers have unique experiences. This scoping review studies the sources of the family caregiver's objective burden, support, coping mechanisms, positive caregiving, and quality of life to understand the caregiver's adaptation process when the individual with ID transits to adulthood, according to Joanna Briggs Institute (JBI) Scoping Review methodology guidelines. The inclusion criteria included studies of family caregivers of any age who provide unpaid care and live with individuals diagnosed with ID who are transitioning to adulthood. Of 2875 articles identified, 12 published studies were included. The main themes included caregivers reporting dissatisfaction with the available adult services and exhaustion from being a caregiver. Overall, a vicious cycle of likely increased demands during the transition, with caregivers not being prepared to cope with these demands while concurrently being dissatisfied with the adult services system, leads the caregivers to develop a pervasive sense of helplessness. Future studies would benefit from recruiting caregivers from sources other than adult-only service centres and using qualitative (to identify the broad aspects of the key factors) and quantitative (to identify the significant differences between the key factors) methodologies.

Quality of life among caregivers of patients with severe mental illness in northwest Ethiopia, 2022: an institutional-based cross-sectional study.

Severe mental illness has negative consequences not only for the person suffering from it but also for their caregiver's quality of life and the community in which they reside. These impacts could be particularly visible in low- and middle-income countries, where the treatment gap for mental illnesses is particularly high. There is a dearth of evidence in Ethiopia. This study aims to assess the quality of life and its associated factors among caregivers of patients with severe mental illness at Felege Hiwot and Tibebe Ghion Compressive Specialized Hospital, Bahir Dar, Northwest Ethiopia, in 2022. An institution-based cross-sectional study design was conducted at Felege Hiwot and Tibebe Ghion Compressive Specialized Hospitals from 13 June to 13 July 2022. A systematic random sample technique was utilized to select 469 study participants. The World Health Organization quality of life-BREF questionnaire was utilized to assess quality of life, and perceived stigma was measured through a family interview schedule questionnaire. The data were gathered using the epicollect5 software with a face-to-face interview method and then exported to SPSS-25. Simple and multiple linear regression analyses were conducted to identify associated factors of quality of life for variables that are statistically significant (p-value< 0.05) with B-coefficients and a 95% CI. Descriptive statistics were used to describe the outcome and predictor variables. A total of 456 respondents participated, with a response rate of 97.2%. The result showed that the mean quality-of-life score of caregivers of patients with severe mental illness for each domain (mean ± standard deviations) was between 46.5 ± 18.7 and 51.2 ± 19.9, with the worst score of zero in the environmental domain and 94 in the social domain. In multiple regression, living in a rural area (B = -5.2; 95% CI, -8.9, -1.8), being illiterate (B = -7.2; 95% CI, -10.6, -3.7), having chronic medical illness (B = -5.2; 95% CI, -8.6, -1.7), having probable cases of anxiety (B = -6.9, 95% CI, -10.5, -13.3), having probable cases of depression (B = -4.9; 95% CI, -8.2, -1.7), and the presence of perceived stigma (B = -7.9; 95% CI, -11.2, -4.77) were significantly associated with the overall quality of life. This analysis suggests that the identified factors can predict over 40% of the variability in overall quality of life scores for caregivers. The quality of life of caregivers of patients with severe mental illness was found to be low. Living in a rural area, being illiterate, having chronic medical illnesses, having probable cases of anxiety and depression, and being stigmatized were negatively associated with the overall quality of life. The findings indicate the necessity for health professionals, the government, and other concerned bodies to pay more attention to caregivers' quality of life.

Should dietary restrictions be imposed on Alzheimer's Disease patients affected by type 2 diabetes?

Antidiabetic drugs, reduction of carbohydrates intake, maintaining normal weight and physical activity are the cornerstone of diabetes 2 treatment. This opinion article is not intended to challenge hundreds of studies unequivocally demonstrating the benefits of a healthy lifestyle including appropriate diet in controlling the consequences of T2DM. The article questions whether the benefits of dietary restrictions for the management of T2D in older adults who are already demented, are worth the potential detrimental effects on quality of life for the patients and their caregivers, as well as the effects of dietary restrictions on frailty, sarcopenia. However, the benefit of dietary restrictions including carbohydrates restrictions, might not manifest in elderly Alzheimer and vascular dementia patients with type 2 diabetes. On the contrary, such restrictions might hinder the patients' and caregiver's quality of life and encumber attempts to maintain normal weight in a population which tends to be underweight. Therefore, the benefit/risk ratio of dietary restriction should be weighed in this population on an individual basis.

Qualidade de vida, estresse, enfrentamento e sobrecarga de cuidadores de pessoas idosas com Alzheimer

Abstract Introduction Caring for older people with Alzheimer's disease can generate a state of prolonged stress, especially when the overload is intense, which impacts the caregiver's quality of life. Objective To compare the quality of life, perception of stress, and coping strategies depending on the level of overload of caregivers of older people with Alzheimer's. Methods Quantitative and cross-sectional study carried out with 126 caregivers of older people with Alzheimer's. The World Health Organization Quality of Life Bref (WHOQOL-Bref), Perceived Stress Scale, Zarit Overload Inventory, and the Problem Coping Scale were used. Data analysis was performed using the Kolmogorov-Smirnov test, boot-strapping procedures, and one-way ANOVA, followed by Tukey's posthoc. A significance of p &lt; 0.05 was adopted. Results Caregivers with intense burden had worse quality of life (p &lt; 0.001). Caregivers without overload had less stress (p &lt; 0.001) and used a problem-focused coping strategy (p &lt; 0.001). Conclusion The level of overload is an intervening factor in the quality of life, stress symptoms, and coping strategies of caregivers of older people with Alzheimer's Disease.

Caregiver Burden and Its Correlates in Caring for Adults With Epilepsy in a Nigerian Tertiary Hospital: A Cross-Sectional Study

Background Epilepsy is a chronic neurological disorder that imposes a substantial burden on caregivers of patients with the condition. There is a lack of research in sub-Saharan Africa assessing the burden of informal caregiving in epilepsy. Aims This study investigated caregiver burden among carers of people with epilepsy, focusing on its patterns, severity, correlates, and impact on caregiver quality of life. Methods A descriptive cross-sectional study was conducted among 246 adult attendees (patients with epilepsy and their caregivers in a 1:1 ratio) at a neurology outpatient clinic. Patients aged 18 to 65, and their caregivers, who were at least 18 years old, were recruited consecutively. A socio-demographic questionnaire and the National Hospital Seizure Severity Scale assessed demographics and illness severity, respectively. The socio-demographic questionnaire, Zarit Burden Interview, and WHO Quality of Life-Bref scale were used to assess the carers’ demographics, burden of care, and quality of life, respectively. Results The mean burden score was 26.5 ± 13.3. Fifty-three caregivers (43.1%) reported a mild-to-moderate burden, while twenty-one (17.0%) reported moderate-to-severe and severe burdens. Caregiver burden was significantly negatively correlated with carers’ quality of life across almost all domains, with the strongest inverse correlation in the psychological domain (r = -0.4, p = 0.01). There was no statistically significant relationship between caregiver burden and respondents’ demographics or clinical variables, except for the epilepsy severity index of the patients (p = 0.01). Conclusion This study provides valuable insights into the burden of care experienced by family members of individuals with epilepsy, highlighting the negative impact on the caregivers' quality of life. Healthcare providers should focus not only on alleviating the suffering of patients with epilepsy but also consider the well-being of caregivers in their treatment plans.

The impact of informal care provision on the quality of life of adults caring for persons with mental health problems: A cross-sectional assessment of caregiver quality of life.

This study assessed the quality of life of informal caregivers for individuals with mental health problems in the Netherlands. An online survey was administered to a panel of informal caregivers in June 2020 (n = 261). Informal caregivers of persons with mental problems were found to have an exceptionally low quality of life. A high subjective burden (p < .001), lower perseverance time (p = .016), low caregiver overall health status (p = .004) and psychological wellbeing (p = .008), younger caregiver age (p = .011), child caregiving responsibilities (p = .025), and no social support network (p = .038) were associated with worse quality of life scores. These findings shed light on the significant challenges faced by informal caregivers of persons with mental health problem. This raises concerns about the long-term sustainability of informal care and mental healthcare reform.

The Management of Hepatic Encephalopathy from Ward to Domiciliary Care: Current Evidence and Gray Areas.

Hepatic encephalopathy (HE) is a common complication of advanced liver disease and acute liver failure. It is a condition that features several neuropsychiatric symptoms that affect mortality, morbidity and the quality of patients' and caregivers' lives. An HE diagnosis is generally an exclusion diagnosis. Once the patient is admitted to the hospital, clinical examination, blood tests and eventually neuroimaging should be performed with the aim of ruling out other causes of acute brain dysfunction. Moreover, HE is recognized using various precipitants that can potentially promote its onset, alone or in combination, and must be identified. Once the diagnostic process is complete, a correct treatment should be started. The anti-HE treatment is based on a combination of the correction of precipitants; non-absorbable antibiotics, such as rifaximin; and non-absorbable disaccharides. Once the patient is discharged from the hospital, specific anti-HE therapy should be maintained in order to prevent other HE episodes.

Level of caregiving burden and affecting factors in family caregivers of patients with lung cancer: A cross-sectional study.

To determine the caregiving burden level and affecting factors of family members caring for patients with lung cancer (LC). This study used a cross-sectional design and a convenience sampling method. The study was conducted between April 2023 and August 2023 with the LC patients (n = 448) and their caregivers (n = 448) who met the inclusion criteria and were followed up in seven clinics of a specialized hospital for pulmonary diseases in Turkey. Data were collected by using (1) a demographic questionnaire (for patient and caregiver), (2) the Zarit Burden Interview (ZBI), (3) the Beck Depression Inventory (BDI), and (4) the Caregiver Quality of Life Index-Cancer (CQoLC). The study included 448 caregivers, with a mean age of 45.09 ± 13.48years, and 71.4% were female. The mean ZBI score of 31.45 ± 16.71 indicated mild to moderate burden. Pearson correlation analysis showed that caregivers' depression levels increased and quality of life decreased significantly as the care burden increased. Multiple regression analysis indicated a significant relationship between the caregiver burden and the patient's age (p < 0.05), caregiver's chronic disease (p < 0.05), type of treatment given to the patient (p < 0.05), patient's metastasis status (p < 0.05) and caregiver's quality of life (p < 0.01). The fact that most of the risk factors identified in this study are non-modifiable highlights the necessity of identifying caregiver burden early by nurses and initiating the appropriate support processes.

Physical activity together for MS (PAT-MS): Secondary outcomes of a randomized controlled feasibility trial

BackgroundCare partners provide essential care to those with multiple sclerosis (MS). Dyadic interventions promoting health behaviours have wide-reaching benefits for individuals with MS and their care partners. However, behavioural interventions to promote physical activity in patient-caregiver dyads have yet to be explored in an MS-specific context. This study examined the secondary outcomes of the “Physical Activity Together for Multiple Sclerosis (PAT-MS)” intervention, including dyadic adjustment, caregiving tasks, caregiver quality of life, coping, and MS impact in MS dyads. MethodsA randomized controlled feasibility trial of the 12-week behavioural PAT-MS intervention. The Dyadic Adjustment Scale, Caregiving Tasks in MS Scale, Caregiver Quality of Life in MS Scale, Coping with MS Caregiving Inventory, and MS Impact Scale measured secondary outcomes of interest. Mixed-model ANOVAs were used to test changes in variables between groups (PAT-MS vs wait-list control) over time. Results20 participants, including 10 people with MS (51.4 ± 10.1 years old; median patient-determined disease steps (PDDS) score= 4, IQR= 1.25) and 10 care partners (48.5 ± 12.1 years old) were recruited and randomized. There was no statistically significant effect of the intervention on any of the secondary outcomes (p= 0.67–1.00). However, large effect sizes and condition-by-time interaction effects indicated improvement in dyadic adjustment (d= 1.03, ηp2= 0.45), the criticism-coercion coping subscale (d= -0.93, ηp2= 0.49), and caregiving tasks (d= 1.05, ηp2= 0.52), specifically within psycho-emotional (d= 1.47, ηp2= 0.38) and socio-practical (d= 1.10, ηp2 =0.37) sub-domains of caregiving tasks after the PAT-MS intervention compared to the wait-list condition. ConclusionWhile this pilot feasibility study was not powered based on the secondary outcomes herein, our findings indicate improvement in dyadic adjustment and emotional and social caregiving tasks, with reduced reliance on criticism-coercion coping in the PAT-MS group compared to controls following the intervention. Findings indicate that PAT-MS may improve dyadic psychosocial well-being of people with moderate-to-severe MS and their care partners, and this should be examined next in a fully-powered study.

CAREGIVING FOR OLDER ADULTS: EXPLORING THE IMPLICATIONS FOR FAMILIAL RELATIONS, DYNAMICS, AND FRIENDSHIP

Abstract In this symposium, we discuss about various aspects of caregiving for older adults who require care because of chronic illness, frailty, and/or long-term disability. Their needs take many forms and so do the demands and concerns of their caregivers, comprising family members and close friends. Under these trying circumstances, relationships are put to the test; shared sensibilities and understandings built over decades of marital and family life begin to unravel, and friendships fray. Thus, caregiving has profound implications for the family as well as non-family members who provide care. Caregiving itself is marked by varying intensities expressed in anguished voices of loss, frustration, and anger but they also convey a deep sense of responsibility, gratitude, and love. There is much that caregiving could offer in terms of the potential for deeper meaning, connection, satisfaction, and goodness. Hence, the papers in this symposium will examine how caregiving responsibilities are distributed among family and non-family members; analyze the implications of caregiving on the notion of home/homeliness for caregivers; account for the meaning of caregiving for a parent or older family member as diverse expressions of filial piety; and explore the issues and challenges around caregiving for older adults with cognitive impairment including dementia from the perspectives of family and non-family members who are caregivers. Collectively, the papers highlight the relational and reciprocal nature of caregiving, and in which intimate relational and cultural processes shape not only the quality and experiences of caregiving but also foundations of the family and notions of home.

EFFECTS OF ENGAGEMENT IN PHYSICAL ACTIVITY BY INFORMAL CAREGIVERS ON THEIR QUALITY OF LIFE

Abstract Informal caregivers are more likely to have poorer health and wellbeing than non-caregivers. Studies have shown the health benefits of engagement in physical activity (PA) among caregivers. However, little is known about whether and how caregiver engagement in PA promotes or protects caregiver wellbeing. We examined (1) the association of caregiver engagement in PA with caregiver quality of life (QoL) and (2) the moderating effect of caregiver engagement in PA on the relationship between caregiving stressors and QoL. We used data on 278 care-recipient/caregiver dyads from the baseline interview of a longitudinal study of caregivers of older adults in Singapore. Multivariable regression first examined whether caregiver engagement in PA (assessed by number of days in a week with at least 30 minutes of PA, self-reported) was associated with physical, psychological, social, and environmental domains of QoL. Subsequently, interaction terms between caregiving stressors (care-recipient physical, memory, behavioral, and mood impairments) and caregiver engagement in PA were introduced and tested. We found that caregiver engagement in PA had a positive association with psychological, social, and environmental domains of QoL. Furthermore, caregiver engagement in PA mitigated the negative association between care-recipient mood impairment and caregiver QoL in the physical and social domains. Our findings suggest that QoL of informal caregivers of older adults may be improved or protected by their regular engagement in PA, especially if their care-recipients have mood impairments. Providers serving caregivers should encourage caregivers to engage in PA and equip them with the necessary support to do so.

Evaluating the caregiver experience during neoadjuvant therapy for pancreatic ductal adenocarcinoma.

Neoadjuvant therapy (NT) is increasingly recommended for patients with localized pancreatic ductal adenocarcinoma (PDAC). Recent research has highlighted the significant treatment burden that patients experience during NT, but caregiver well-being during NT is poorly understood. A cross-sectional mixed-methods analysis of primary caregivers of patients with localized PDAC receiving NT was undertaken. All patients completed the Caregiver Quality of Life Index-Cancer (CQOLC) survey, while semi-structured interviews were conducted among a convenience sample of participants. Among 28 caregivers, the mean age was 60.1 years, and most were patient spouses/significant others (71.4%). Patients had resectable (18%), borderline resectable (46%), or locally advanced (36%) PDAC with a mean treatment duration of 2.9 months at the time of their caregiver's enrollment. Most caregivers felt that they received adequate emotional/psychosocial support (80%) and understood the rationale for NT (93%). A majority (60%) reported that caregiving responsibilities impacted their daily lives and required a decrease in their work hours, leading to financial challenges (47%). While overall QOL was moderate (mean 83 ± 21.1, range 0-140), "emotional burden" (47.3 ± 20.9), and "positive adaption" (57.3 ± 13.9) were the lowest ranked CQOLC subsection scores. Caregivers of patients with PDAC undergoing NT experience significant emotional symptoms and impact on their daily lives. Assessing caregiver needs and providing resources during NT should be a priority.

Predictors of Sleep Quality in Spouse Caregivers of Community-Dwelling People With Dementia Using Propensity Score Matching Analysis.

Many family caregivers of people with dementia (PwDs) have sleep problems and poor sleep quality. Sleep may be negatively affected by caring for a family member with dementia, especially a spouse. This study was designed to assess sleep quality in spouse caregivers of PwDs and determine the impact of care provision on their sleep quality. A secondary analysis of 58,050 participants in the 2018 Korea Community Health Survey was conducted. To prevent selection bias, a propensity score matching analysis was performed. Multiple logistic regression analysis was conducted to investigate the predictors of sleep quality. After obtaining a propensity score matching threshold of 3:1, the percentage of poor sleepers was 24.2% in the control group and 33.3% in the spouse-caregiver group, which indicates a significant difference (χ 2 = 11.79, p = .001). After adjusting for depressive symptoms in the multiple logistic analyses, no intergroup difference was found in terms of risk of poor sleep quality (odds ratio = 1.12, 95% CI [0.90, 1.61]). The findings of this study support that spouse caregivers of PwDs have poorer sleep quality than their nonspouse peers and that management of depressive symptoms is important to improving the sleep quality of spouses providing care to PwDs. Nursing interventions such as light therapy and exposure to sunlight during daytime hours to both improve sleep quality and reduce depressive symptoms can improve sleep quality in this vulnerable caregiver group.

Explorations of Caregiver Health and Well‐Being

AbstractBackgroundRecent projections have found that the global prevalence of dementia is expected to grow rapidly through 2050, rising from an estimated 57.4 million cases in 2019 to an estimated 152.8 million cases by 2050. This has alarming public health consequences, as dementia takes a toll socially, emotionally, and financially, with a global societal cost of $1.3 trillion dollars in 2019. Caregivers are at the forefront of this crisis, with more than 11 million individuals in the US providing unpaid care for individuals with dementia, estimated at 16 billion dollars worth of care/year. Studies investigating the factors that impact caregiver burden are lacking. This study aims to 1) qualitatively examine caregiver burden and quality of life (QoL) 2) identify/highlight factors that might provide support and/or improve caregiver QoL.MethodThis is a qualitative, cross‐sectional study that will use a series of interviews and questionnaires to collect data. The studies will be created on, and deployed using, Qualtrics software, a commonly used platform for survey studies.ResultPrevious research suggests that factors impacting caregiver burden and QoL will be highly individualized across demographics such as socioeconomic status and race, and that QoL will be, on average, lower among caregivers as a group compared to the general population. We hypothesize that engagement in various lifestyle factors, particularly those that are self‐focused, regardless of amount of time spent on them, will correlate with higher QoL and lower caregiver burden scores.ConclusionThe factors that predict caregiver burden and quality of life are an important and often under‐examined part of dementia care. This study, expected to be completed in Spring 2023, will contribute to the current understanding of caregiver’s experiences, and provide practical ideas to help increase QoL and reduce burden.

Dexmedetomidine at Home for Intractable Dystonia and Insomnia in Children With Special Needs: A Case Series.

We know that syndromic conditions and severe chronic diseases can be associated with symptoms that may interfere with sleep, significantly impacting the life quality of children and caregivers. Drugs commonly used in treating insomnia, such as melatonin, benzodiazepines, niaprazine, and antihistamines, are often either ineffective or associated with adverse effects, requiring new therapeutic perspectives. Dexmedetomidine is a selective alpha-2 agonist with hypnotic and anxiolytic effects, which, by stimulating alpha-2 adrenergic receptors in the locus coeruleus, induces sleep comparable to stages 2-3 of the non-REM phase without substantially affecting the respiratory drive during sedation. Its use has already been extensively described in pediatric intensive care or procedural sedation literature. In 2018, the Italian Medicines Agency (Agenzia Italiana Del Farmaco AIFA) authorized the off-label use of dexmedetomidine outside of intensive care in Children undergoing palliative treatment to control distressing symptoms related to pathology and refractory sleep disorders, and the literature reported cases of children who received dexmedetomidine at home. Our study aims to describe the home use of dexmedetomidine in children with insomnia or intractable dystonic states. We conducted a retrospective analysis through a questionnaire addressed to 12 Italian pediatric palliative care centers regarding the home use of dexmedetomidine in sleep disorders and intractable dystonic states. We collected a case series of 9 children treated with dexmedetomidine at home, 8 via intranasal and 1 via intravenous route. All children received the first drug administration in the hospital or hospice during a dedicated admission, under close monitoring of vital signs parameters for 72 hours (3 days, range 2-7 days). After discharge, the potential side effects of the drug were explained to the patient's families, and, once informed consent was obtained, the home administration of dexmedetomidine continued, with follow-up by the palliative care team. At home, dexmedetomidine was administered for 3000 days (minimum 1 month, maximum 36 months). The first patient was treated for 1095 days, from 2019 to 2021 (discontinued due to underlying condition-related death). All patients observed a persistent benefit from the treatment on symptoms, and none of them discontinued dexmedetomidine administration due to drug-related adverse effects or perceived lack of therapeutic efficacy. Therefore, its use at home may represent a promising therapeutic approach for intractable sleep disorders or dystonic states in pediatric palliative care children. Further studies are needed to confirm our results.

Workshop 4: Cognitive Assessment For Older People in Daily Clinical Practice – A Primer

The world faces a rapid population aging. Based on the World Health Organization (WHO) estimates, number of individuals older than 60 years is expected to double by 2030. With this demographic shift, non-communicable diseases are on the rise in the older population, especially neurocognitive disorders (NCD). Globally, 10 million new cases of dementia are detected every year according to the WHO (2019) data. Mild Cognitive Impairment (MCI) has an even greater prevalence of 15-20% with a conversion rate of 5-10% each year. NCD are not only progressive, but are associated with impairment of functioning, reduced autonomy, behavioral challenges, altered quality of life and caregiver burnout.In light of the same, brief, tailored and culturally sensitive cognitive assessments need to be an integral component of routine mental healthcare for older people. However, training and validation related to such rating scales are often lacking, there exists ambiguity in their interpretation and their use is limited to tertiary settings. Further, various challenges in their use such as effect of education, ceiling effects, linguistics and patient comfort are often not taken into account.With this background, the current interactive workshop will involve-Understanding the various domains of cognitive assessments in older people-Clinical nuances for early detection of cognitive deficits-Familiarity with the basic rating scales (screening and batteries) for assessing cognitive deficits in older adults-Bedside lobar assessments∗This workshop intends to make the participants comfortable and interested in using structured cognitive assessments and clinical evaluation of cognitive deficits as a routine component of their clinical care for older adults.