The aim of this article is to develop and pilot test a new supportive care intervention, Empower GBM, designed for patients with glioblastoma and their family caregivers to reduce psychological distress and improve quality of life.

Qualitative interviews were conducted with patients diagnosed with glioblastoma and their caregivers to obtain information about their experiences and needs in coping with glioblastoma. We also gathered their feedback about the supportive care intervention we were proposing (Phase I). Following Phase I, we conducted a single-arm pilot to evaluate the feasibility and acceptability of the 6-session intervention (Phase II).

During interviews (N = 14), patients and caregivers reported having the most difficulty and distress surrounding disease progression and management, maintaining dignity and autonomy, negotiation of roles and responsibilities, and maintaining connection with one another. Participants endorsed that an intervention like Empower GBM with skills focused on managing symptoms to increase independence, increasing caregiving efficacy and support, and coping with dyadic challenges would be of potential benefit. Preliminary results from the pilot study (N = 11) suggested the intervention is both feasible (e.g., 82% completed all 6 sessions and post-treatment surveys) and acceptable (88.9% reported a mean satisfaction score of 3 or higher; mean score of 3.57/4.0). Improvements in psychological outcomes, functional well-being, and caregiving efficacy from pre- to post-treatment survey results suggested the potential benefits of the intervention.

We developed a novel supportive care intervention informed by the dyadic illness model that is designed to meet the individual and interpersonal needs of patients with glioblastoma and their caregivers. Unique features include its flexibility to be delivered to patients and/or their family caregivers individually or jointly, while providing skills and strategies to meet the needs of both individuals and the dyad as the unit of care in coping with glioblastoma.

This study aims to explore the everyday experiences of people living with Lewy body dementia and their families, to deepen understanding of their care needs. Lewy body dementia is a neurodegenerative condition associated with shorter life-expectancy and poorer quality of life than other forms of dementia. Cognitive fluctuations, visual hallucinations, falls, and motor features of Parkinsonism gives rise to complex and debilitating symptoms. Other prominent features include behavioral and emotional problems, rapid eye movement sleep disorder, and autonomic dysfunction. Improving palliative care for people with dementia continues to be an international priority; however, little is known as to how a palliative care approach could support people living with Lewy body dementia and their families.

Drawing on narrative theory of self and personhood, a qualitative, longitudinal narrative approach provided unique insights into 5 couples’ experiences of living with Lewy body dementia. Analysis was conducted using Murray’s levels of narrative analysis in health psychology to explore stories at the personal, interpersonal, positional, and societal level.

Participants with Lewy body dementia described losses associated with communication, continence, and energy leading to a progressive loss of independence. For their family caregivers a loss of companionship was particularly salient. These losses, compounded by a perceived lack of clinical support, resulted in suffering both for the person with Lewy body dementia, and for those close to them.

There has been a societal and political shift to move beyond loss in dementia, to a focus on abilities and living well. However, acknowledging loss, while supporting symptom management is an important aspect of Lewy body dementia care. Providing person-centered, palliative supportive care throughout the disease trajectory could reduce suffering and enhance well-being.

Internationally, stresses related to the COVID-19 pandemic negatively affected the mental health of family caregivers of adults with intellectual and developmental disabilities (IDDs).

This cross-sectional study investigated demographic, situational and psychological variables associated with mental wellbeing among family caregivers of adults with IDDs during the COVID-19 pandemic.

Baseline data from 202 family caregivers participating in virtual courses to support caregiver mental well-being were collected from October 2020 to June 2022 via online survey. Mental well-being was assessed using total scores from the Warwick-Edinburgh Mental Wellbeing Scale. Demographic, situational and psychological contributors to mental well-being were identified using hierarchical regression analysis.

Variables associated with lower levels of mental well-being were gender (women); age (<60 years old); lack of vaccine availability; loss of programming for their family member; social isolation; and low confidence in their ability to prepare for healthcare, support their family member's mental health, manage burnout and navigate healthcare and social systems. Connection with other families, confidence in managing burnout and building resilience and confidence in working effectively across health and social systems were significant predictors of mental well-being in the final regression model, which predicted 55.6% of variance in mental well-being (P < 0.001).

Family caregivers need ways to foster social connections with other families, and support to properly utilise healthcare and social services during public health emergencies. Helping them attend to their needs as caregivers can promote their mental health and ultimately improve outcomes for their family members with disabilities.

To explore the lived experience of informal dementia caregivers during the COVID-19 pandemic.

Interpretative Phenomenological Analysis (IPA) was employed. Eight primary informal caregivers were recruited from a community mental health service for older people when attending in their role as caregiver of a service-user. Semi-structured interviews were conducted at home or in the clinic based on the participants’ convenience and preference. IPA was completed following Smith and colleagues framework for analysis.

Six group experiential themes, each with a number of subthemes, emerged from the cross-case interpretative analysis: the ambivalent experience of caregiving (subtheme: those complex emotional experiences); navigating lockdown: lived challenges and opportunities (subthemes: the pervasive fear, intensification of existing struggles, being prevented from caring for a loved one, and lockdown as a time for opportunity); transitioning out of lockdown (subthemes: regaining freedom, but restricted freedom after all and being in a lockdown of one’s own); the present with COVID-19, but mostly with dementia (subthemes: dementia, a disease that does not pause, and ‘takeaways’ from the journey); looking into the future (subthemes: embracing COVID-19 and the true needs); and a word on coping (subtheme: managing it all as best one can).

Findings demonstrate the significance of the meaning caregivers ascribed to their experiences on their wellbeing and ability to cope in times of COVID-19 and thereafter. Gaining an understanding of the caregivers’ unique experiences is crucial to appreciate how to best support them.

Immigrant caregivers support the aging population, yet their own needs are often neglected. Mobile technology-facilitated interventions can promote caregiver health by providing easy access to self-care materials.

This study employed a design thinking framework to examine Chinese immigrant caregivers’ (CICs) unmet self-care needs and co-design an app for promoting self-care with CICs.

Nineteen semi-structured interviews were conducted in conceptual design and prototype co-design phases.

Participants reported unmet self-care needs influenced by psychological and social barriers, immigrant status, and caregiving tasks. They expressed the need to learn to keep healthy boundaries with the care recipient and respond to emergencies. Gaining knowledge was the main benefit that drew CICs’ interest in using the self-care app. However, potential barriers to use included issues of curriculum design, technology anxiety, limited free time, and caregiving burdens.

The co-design process appears to be beneficial in having participants voice both barriers and preferences.

Post-traumatic stress symptoms (PTSS) were the most frequently reported mental health concern for youth during COVID-19, yet variations in youth's PTSS responses warrant empirical consideration. Features of the caregiving environment influence youth's responses to environmental stressors, and youth's parasympathetic nervous system regulation may qualify the magnitude and/or direction of these effects. This prospective investigation evaluated diathesis stress and differential susceptibility models of caregiving and parasympathetic influences on youth's PTSS responses to COVID-19.

Participants were 225 caregiver-youth dyads (youth 49.8% female at birth; 88.4% non-white) followed from childhood through adolescence and COVID-19. Youth's resting respiratory sinus arrhythmia (RSA; Mage = 6.11, s.d. = 0.21), caregiving features (i.e. attachment security [youth Mage = 12.24, s.d. = 0.35] and caregiver internalizing psychopathology [caregiver Mage = 39.29, s.d. = 6.78]) were assessed pre-pandemic. Youth's PTSS was assessed one year prior to the US COVID-19 pandemic (Mage = 14.24, s.d. = 0.50) and during the spring of 2020 at the height of the pandemic (Mage = 15.23, s.d. = 0.57).

Youth's PTSS increased during COVID-19. Youth with relatively high resting RSA evidenced the lowest PTSS when their caregiving environment featured high attachment security or low caregiver internalizing problems, but the highest PTSS when their caregiving environment featured low attachment security or high caregiver internalizing problems. In contrast, PTSS levels of youth with relatively low or average resting RSA did not differ significantly depending on attachment security or caregiver internalizing.

Results are consistent with a differential susceptibility hypothesis, wherein relatively high resting RSA conferred heightened sensitivity to caregiving environments in a for-better-and-for-worse manner during COVID-19.

More than 1.5 million people have been diagnosed with dementia in Russia. Although we have all the necessary doctors and medicines, there is no clear, expert-approved special care system for people with dementia: caregivers do not have a manual for working with people with cognitive impairments. Our adapted web-guide and mobile application aim to educate professional and informal caregivers, and society about the principles of taking care for people with dementia, it’s any age prevention, creating an environment of equality.

The objective of this study is to explore the level of raising awareness of the Russian society about dementia after the implementation of our digital technologies.

Conducting an in-depth expert interview and a focus group with caregivers who got acquainted with the adapted ISupport guide were applied in order to evaluate the appropriateness of care practice for people with dementia in terms of medical standards and to uncover practical infelicities and improve them. Collected data and respondent’s replies analyses, content-analysis that we made became the basic principles of our new application. The quantitative method allows us to track user activity and assess the level of social involvement in dementia issues. Moreover, we have collected caregivers' opinions after they used our application and web-version for the first time by virtue of a qualitative method.

We have reached various aims during our ISupport implementation and working on the research project. First, the number of users of our mobile application is steadily growing (+ 4 people per day at the launch stage). Second, we have received a lot of feedback about our ISupport web version: “it is easy to use; it has a good design, sipid content and a logical structure, which in turn facilitates the process of caring for a person with dementia. Third, medical experts approved our adaptation, web-version and mobile application and recommended it for use in Russian-speaking countries.

we have come to both theoretical and practical results of ISupport implementation in Russia and successfully launched two digital projects. Thanks to the work we have done the dementia issue in Russia will become more popular among society and will prevent the disease of thousands of people.