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Background: The symptomatic management of Parkinson's disease (PD) relies heavily on medications, which increase in complexity as the disease progresses., Objectives: To describe (i) the extent, range, and nature of research describing the experience and challenges people with PD and their carers have with their medicines for symptomatic treatment, and (ii) any interventions that have been reported in a community setting that address medicine-related challenges experienced by people with PD., Methods: The scoping review searched electronic databases (EMBASE, PubMed, and CINAHL). The studies included were full-text articles in English only, including conference abstracts that focussed on patients with PD or their carers and discussed medicines in the primary care setting, even where this was not the primary focus., Results: Thirty-nine papers were taken forward for data extraction. Twenty described patient experience and challenges. Although none were explicitly focussed on medications, they did highlight challenges including the work of taking multiple medications and a desire for non-oral formulations. Nineteen described or tested interventions to support people with PD with their medication including community pharmacist-led reviews, medication compliance aids, and the use of text message reminders. These were all small-scale feasibility and pilot studies, and none were grounded in a methodological framework. Positive outcomes were reported against various scales, but no evidence of scaling up any of the interventions was found., Conclusion: There is very little published research surrounding the challenges people with PD have with their medicines. The published research that does exist alludes to challenges with medicines taking in people with PD but identifies a gap in the detail and understanding. Further work is required to improve our understanding and allow the development of sustainable interventions that support people with PD and their carers., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Royal Pharmaceutical Society.)

Introduction: This scoping review mapped evidence on physical activity (including structured exercise) and sedentary behaviour interventions (interventions to reduce sedentary behaviour) in people living with both frailty and multiple long-term conditions (MLTCs) and their informal carers., Methods: Ten databases and grey literature were searched from 2000 to October 2023. Two reviewers screened studies and one extracted data. Results were shared with three stakeholder groups (n = 21) in a consultation phase., Results: After screening, 155 papers from 144 studies (1 ongoing) were retained. The majority were randomised controlled trials (86, 55%). Participants' mean age was 73 ± 12 years, and 73% were of White ethnicity. MLTC and frailty measurement varied widely. Most participants were pre-to-moderately frail. Physical health conditions predominated over mental health conditions.Interventions focused on structured exercise (83 studies, 60%) or combined interventions (55 studies, 39%). Two (1%) and one (0.7%) focused solely on habitual physical activity or sedentary behaviour. Adherence was 81% (interquartile range 62%-89%) with goal setting, monitoring and support important to adherence. Carers were only involved in 15 (11%) studies. Most interventions reported positive outcomes, primarily focusing on body functions and structures., Conclusions: A modest volume of evidence exists on multicomponent structured exercise interventions, with less focus on habitual physical activity and sedentary behaviour. Interventions report largely positive effects, but an updated systematic review is required. The field could be advanced by more rigorous characterisation of MLTCs, socioeconomic status and ethnicity, increased informal carer involvement and further evaluation of habitual physical activity and sedentary behaviour interventions., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Introduction: Approximately 2 million people in Italy are currently living with dementia or mild cognitive impairment (MCI), and 4 million are involved as family members or caregivers. Considering the significant impact of dementia, the Italian Ministry of Health entrusted the Italian National Institute of Health (Istituto Superiore di Sanità) with the development of a guideline within the Italian National Guideline System (Sistema Nazionale Linee Guida, SNLG) on the diagnosis and treatment of dementia and MCI. The main objective was to provide evidence-based recommendations aimed at reducing the variability and ensuring the appropriateness of clinical practices throughout the whole care process from identification and diagnosis to the end of life for people with dementia (PwD) or MCI and their families/caregivers., Methods: The GRADE-ADOLOPMENT approach was used to adopt, adapt and update the guideline developed by the National Institute for Health and Care Excellence in 2018 (NG97). The methodology was based on the Methodological Handbook produced by the SNLG. A multidisciplinary panel of 29 experts and four representatives of family members/caregivers discussed and approved 47 review questions. Of these, 34 questions were adopted from the NG97, and 13 were new questions, including 10 questions referring to MCI. Systematic literature reviews were performed for each question, and a team of methodological and clinical experts qualitatively assessed and summarised results from included studies based on the GRADE approach. To facilitate the implementation and dissemination of the contents of this guideline, a care pathway and a leaflet dedicated to PwD or MCI and their families/caregivers were also developed., Results: The literature review for this guideline included studies published up to November 2023. More than 1000 peer-reviewed publications were included, covering the following areas: (i) identification, diagnosis and post-diagnostic support; (ii) care models and care coordination; (iii) pharmacological interventions for cognitive symptoms; (iv) non-pharmacological interventions for cognitive symptoms; (v) non-cognitive symptoms, intercurrent illnesses and palliative care. The multidisciplinary panel discussed and approved 167 clinical practice recommendations and 39 research recommendations., Commentary: Italy's first National Guideline on dementia and MCI addresses diagnosis, treatment and care within the National Healthcare System. It includes recommendations on pharmacological and non-pharmacological approaches, and emphasises tailored interventions, comprehensive cognitive assessment, staff training and palliative care. The guideline also underlines the need to involve PwD in decision-making and supporting caregivers throughout the entire course of the disease., Conclusions: Structured strategies for the dissemination and implementation of the guideline will be defined within the Italian Fund for Alzheimer and other Dementias 2024-2026. An interactive care pathway and a leaflet dedicated to PwD and their carers are already available. The guideline will be updated starting January 2027, but early updates may be planned in case of breakthrough advancements., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background and Objectives: Dental care utilization is an important, yet understudied aspect of healthcare in informal caregivers of persons with dementia. This study examined how caregiving-related characteristics are associated with dental care utilization among U.S. informal caregivers of persons with dementia and further examined gender differences., Research Design and Methods: Pooled data came from the Behavioral Risk Factor Surveillance System in 2016, 2018, 2020, and 2022. A nationally representative sample of informal caregivers (n = 3,909) was included. Dental care utilization was "yes" versus "no" within the past year. Caregiving-related characteristics included caregiver role, intensity of care, duration of care, and type of care. Logistic regressions and subgroup analyses were conducted., Results: In total sample, compared to adult child caregivers, spousal caregivers were 28% less likely to visit a dentist (odds ratio [OR] = 0.72; 95% confidence interval [CI] = 0.56, 0.94). Caregivers who provided care for more than 20 hr per week were 18% less likely to visit a dentist (OR = 0.82; 95% CI = 0.69, 0.98). In subgroup analyses, intensity of care was a barrier to dental care utilization for female caregivers (OR = 0.78; 95% CI = 0.62, 0.98), whereas caregiver role such as spousal caregiver (OR = 0.59; 95% CI = 0.39, 0.89) or other relative caregiver (OR = 0.70; 95% CI = 0.50, 0.99) was a barrier to dental care utilization for male caregivers., Discussion and Implications: The findings highlight the importance of caregiving-related characteristics in dental care utilization and suggest gender-tailored interventions., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: English and Welsh laws require "contemporaneous" consent to sexual relations, often precluding "non-capacituos" people living with advanced dementia from these human interactions., Research Design and Methods: The views of people living with dementia, carers, professionals, and over-55s were explored on implications of current laws on sexuality in dementia. Thirty-five participants from England were recruited through purposive selective sampling. Audio-taped semistructured interviews were transcribed and thematically analyzed with each stakeholder group coded separately., Results: Common themes across stakeholders were (i) law reform needed due to their hammer-like effect ignoring the individual; (ii) dissonant theme of needing the law for protection; (iii) negative impact of denied intimacy on individuals and partners; (iv) support for Advance Decisions on Intimacy with caveats; (v) less support for involvement of Court of Protection and Powers of Attorney; (vi) call for review of capacity concept with support for an assent model. People living with dementia described shame and stigma associated with policing of their sexuality and perception of being singled out for protection and intrusion into their lives. For informal carers (mostly wives), the theme of "what about me" emerged, demonstrating that for the long-term partnered, this is a couple's issue., Discussion and Implications: Practical implications of this study include need to address ageism and ableism; human rights education for society and professionals; starting point of presumed capacity for sexual relations with consensus on how and when this should be rebutted; and care homes' certification requirements should incorporate assessment of the relationship health of their residents., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Aims: Adapting interventions with an existing evidence base offers a more efficient approach than developing a new intervention. The aim of this study was to describe the process of adapting a home-based cardiac rehabilitation (CR) programme (REACH-HF) intervention originally developed in the UK for people with heart failure (HF) to the Danish health system-the 'DK:REACH-HF' programme., Methods and Results: We followed methodological framework for the conduct and reporting of studies adapting interventions, utilizing documentary analysis, qualitative interviews, stakeholder consultations, and mapping of the Danish policy context. Our study found broad support for the REACH-HF intervention as an alternative to existing centre-based CR. We also identified three key areas of adaptation for the Danish context. First, reduce the word count of the intervention's resources by linking to existing publicly available CR materials. Second, while retaining REACH-HF core components, adapt its content and delivery to reflect differences between Denmark and UK. Third, develop a digital version of the intervention., Conclusion: Using an evidence-based approach, we successfully adapted the REACH-HF intervention to the context of the Danish healthcare setting, maintaining core components of the original intervention and developing both a paper-based and digital version of the programme material. To inform scaled national implementation of the DK:REACH-HF programme, we seek to undertake a pilot study to test the adapted intervention materials feasibility and acceptability to healthcare practitioners, patients, and their caregivers and confirm the positive impact on the outcomes of HF patients and caregivers., Competing Interests: Conflict of interest: R.S.T. and H.M.D. are part of the original developers of the REACH-HF intervention., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Delivering insomnia treatment by the Internet holds promise for increasing care access to family caregivers, but their ability to adhere to and benefit from such fully-automated programs has not been rigorously tested., Purpose: This fully-powered, single-group trial tested whether characteristics of the caregiving context influence high-intensity caregivers' engagement with and benefit from an empirically validated Internet intervention for insomnia., Methods: At baseline, caregivers providing unpaid time- and responsibility-intensive care who reported insomnia (N = 100; age M = 52.82 [SD = 13.10], 75% non-Hispanic white, 66% ≥college degree) completed questionnaires about caregiving context and sleep, then 10 prospectively-collected online daily sleep diaries. Caregivers then received access to SHUTi (Sleep Healthy Using the Internet), which has no caregiver-specific content, for 9 weeks, followed by post-assessment (questionnaires, diaries). Engagement was tracked by the SHUTi delivery system., Results: Sixty caregivers completed SHUTi, 22 initiated but did not complete SHUTi, and 18 did not initiate SHUTi. Caregivers were more likely to use SHUTi (than not use SHUTi) when their care recipient (CR) had worse functioning, and were more likely to complete SHUTi when supporting more CR activities of daily living (ADL; ps < .03). Higher caregiver guilt, more CR problem behaviors, and being bedpartners with the CR related to more improved sleep outcomes, whereas supporting more CR instrumental ADL related to less improvement (ps < .05)., Conclusions: Factors associated with greater caregiving burden, including greater CR impairment and caregiving guilt, were generally associated with better engagement and outcomes. Caregivers with substantial burdens can adhere to and benefit from a fully automated insomnia program without caregiver-specific tailoring., (© Society of Behavioral Medicine 2024. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Digital health interventions show potential to increase caregivers' access to psychosocial care; however, it is unclear to what extent existing interventions may need to be tailored to meet caregivers' unique needs., Purpose: This study aimed to determine whether-and if so, how-an efficacious Internet-delivered insomnia program should be modified for caregivers. The generalizability of these findings beyond the tested program was also examined., Methods: Higher-intensity family caregivers (N = 100; age M = 52.82 [SD = 13.10], 75% non-Hispanic White, 66% ≥college degree) received access to an Internet-based cognitive-behavioral therapy for insomnia (CBT-I) program. Participants who completed one or more intervention "Cores" provided open-ended feedback on their experience; nonusers (completed no Cores) shared their barriers., Results: Most caregivers who used the program (n = 82, 82%) found it feasible, citing its user-friendly, fully automated online format. Many reported that CBT-I strategies were helpful, although some faced challenges in implementing these strategies due to the unpredictability of their caregiving responsibilities. Opinions were divided on the utility of tailoring the program for caregivers. Nonusers (n = 18, 18%) primarily cited concerns about time burden and lifestyle compatibility as usage barriers., Conclusions: Delivering fully automated behavioral interventions through the Internet appears suitable for many caregivers. Extensive tailoring may not be required for most caregivers to benefit from an existing online CBT-I program, although additional guidance on integrating CBT-I strategies in the context of challenging sleep schedules and environments may help a subset of caregivers. Future research should explore how such tailoring may enhance digital health intervention uptake and effectiveness for caregivers., (© Society of Behavioral Medicine 2024. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: The number of patients under home mechanical ventilation is increasing worldwide. The unique nature of these patients and their complex health needs exposes home caregivers to various needs and challenges regarding different dimensions of care., Objective: The present study was conducted to investigate the effect of the universal model of family-centered care on the clinical outcomes of the patient and the family., Methods: This clinical trial was conducted between 2020 and 2021. A total of 60 patients under invasive mechanical ventilation was selected and divided into control (routine training that is usually given by hospital staff to families to care for patients) and intervention (comprehensive pre-discharge training program to post-discharge follow-up using the universal model of family-centered care) groups using random block design and universal model of family-centered care. Home caregivers' functional skills and burden, as well as patients' readmission and mortality rates, were compared in the two groups., Results: Implementing the intervention 1 and 3 months later effectively increased home caregivers' functional skills. Moreover, a statistically significant difference was observed between the two groups in terms of the psychological burden of caregiving (P < .001); the implementation of the intervention could highly reduce the psychological burden of caregiving in the intervention group (EF = 0.94). The hospital readmission and mortality rate in the intervention group was significantly lower than in the control group (P = .02 and P = .03, respectively)., Conclusions: Given the significant impact of the universal model of family-centered care on the clinical outcomes of the patient and the family, pre-discharge training and its post-discharge follow-up and continuity of education with an active presence of nurses, as one of the main pillars of the treatment, seems essential., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Tube feeding is discouraged among older adults with advanced dementia; nevertheless, caregivers often find feeding decisions challenging to navigate., Aim: This study aims to gain a comprehensive understanding of tube feeding among community-dwelling older adults with advanced dementia in Singapore and its relationship to older adult quality of life (QoL) and caregiver psychological distress., Methods: We use a convergent mixed-methods design, synthesising analysis of qualitative caregiver interviews (n = 25) and two-year prospective, longitudinal cohort survey data (n = 215, 1018 observations)., Results: Findings from the qualitative interviews revealed caregivers' expectations of reduced QoL for older adults with feeding tubes and their own distress related to making feeding decisions and fears prompting plans to tube-feed. Sixteen percent of community-dwelling older adults with advanced dementia relied on feeding tubes during the two-year study period. Adjusting for potential confounding and using instrumental variables estimation, tube feeding was associated with reduced older adult QoL (P < .05) and increased caregiver anxiety and depression (P < .10)., Conclusion: Consistent with expert guidelines, we found that tube feeding was associated with significantly reduced QOL among older adults living with dementia and increased distress among caregivers relative to those of older adults without feeding tubes. Despite caregivers' recognition of reduced QOL associated with older adult use of feeding tubes, many expressed angst related to feeding choices. Our findings suggest the need for decision tools to support caregivers in making informed decisions concordant with their values., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Health literacy is a public health issue. Unpaid caregivers of older people with low health literacy may have difficulties providing care, exerting a negative impact on the care process. The aim of the present study was to perform a systematic review of the literature on factors associated with low health literacy in unpaid caregivers of older people. Searches for relevant articles were conducted in the Cochrane Library, Embase, LILACS, PubMed and Web of Science databases. A total of 1440 articles were identified, nine of which met the eligibility criteria and were included in the systematic review, which was registered in PROSPERO (CRD42024522986). A total of 2209 unpaid caregivers participated in the studies selected for this review. Most were women (67.2%). The average frequency of inadequate health literacy was 27.1%. Sociodemographic characteristics (i.e. advanced age, low educational level, the female sex), factors related to the care process (i.e. low acculturation, low empowerment, poor ability to read medication package inserts, lower care capacity, greater disease severity, hospitalization of care recipients), cognitive factors and factors related to quality of life/well-being (i.e. less social support, poorer quality of life, greater cognitive impairment, higher levels of burden) were associated with low health literacy. In conclusion, low health literacy in unpaid caregivers of older people is associated with sociodemographic, care-related and cognitive factors as well as factors related to quality of life/well-being. Low health literacy may exert a negative impact on the health of caregivers and, consequently, the quality of care provided to older people., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Social participation is associated with increased quality of life and well-being but declines following the onset of dementia. Informal caregivers may facilitate social participation among people with dementia. This study aims to identify characteristics of informal caregivers associated with social participation of people with dementia in valued activities., Research Design and Methods: This cross-sectional study used data from the 2011, 2015, and 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving. NHATS respondents with possible or probable dementia and an informal caregiver were included (N = 1,060). Respondents were asked whether they participated in each of 5 social activities during the past month. Valued activities were considered somewhat or very important. Survey-weighted logistic regression models were computed to identify characteristics of primary informal caregivers associated with participation of people with dementia in social activities., Results: Social participation of people with dementia was not independently associated with sociodemographic variables or relationship to the primary caregiver (spouse/partner, adult child, or other relative/nonrelative). Social participation of primary caregivers was associated with increased participation of people with dementia in the same activity for visiting friends/family (odds ratio [OR] = 1.88, p = .016), attending religious services (OR = 4.82, p < .001), and volunteering (OR = 3.25, p = .015), whereas greater caregiver external support was associated with increased participation of people with dementia in organized activities (OR = 1.37, p = .022)., Discussion and Implications: Assets of informal primary caregivers found to promote social participation of people with dementia include traveling to the person with dementia's home, being socially active themselves, and utilizing support services., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Family conflict is a stressor for dementia family caregivers, yet its impact may differ based on the relationship between caregivers and their recipients. This study's objectives were to categorize caregivers into groups based on family conflict, examine whether the relationship to the recipient influences group membership, and determine whether these groups are associated with engaging in abusive and neglectful behaviors., Research Design and Methods: This national, cross-sectional study of 453 dementia family caregivers used latent class analysis to generate groups based on family conflict and abuse accusations. A multinomial logistic regression determined if relationship type (i.e., being a spouse, child, or grandchild to the care recipient or having a nontraditional relationship) predicted group membership. Groups were examined as predictors of abusive and neglectful behaviors using analysis of variance., Results: A 4-class solution emerged as the best fit: 3 groups with varying probabilities of family conflict and 1 group with elevated probabilities of abuse and neglect accusations. Relationship typed predicted membership in these classes. Group membership predicted abusive and neglectful behaviors., Discussion and Implications: Adult children were more likely to experience high amounts of family conflict, whereas nontraditional caregivers were less likely to experience abuse and neglect accusations. Membership in the accusations group was a unique risk factor for abusive and neglectful behaviors. These findings support the need for continued investigation of family conflict in dementia caregivers. They also call to examine how family relationship types, including nontraditional family structures, influence caregiving outcomes., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Music-based interventions are acknowledged to be accessible and beneficial to people living with dementia. As part of an over-arching research project exploring the contributions of person-centered caregiver singing (PCCS) intervention to caregiver's provision of care, this study aimed to explore caregiver's experiences of a PCCS training program. 8 caregivers across 2 care homes in South Africa participated in 4 iterative participatory cycles aimed at refining the training protocol. We completed a thematic analysis of semi-structured interviews of caregivers' experiences of the training. 3 themes emerged: workshop components contributed to positive learning experiences; caregivers' increased knowledge and insight into dementia, music, and personhood; and caregivers' enhanced self-efficacy which encompassed their emotional wellbeing, self-awareness, and confidence. Our study highlights caregivers' self-efficacy, self-hood, and personhood as valuable benefits in person-centered care training. Caregivers experienced training as both professionally and personally beneficial. While PCCS supported a shift toward a person-centered care approach, further research would help establish approaches to support sustainability of PCCS training and use in wider contexts., (© The Author(s) 2024. Published by Oxford University Press on behalf of American Music Therapy Association.)

Dementia negatively affects the wellbeing of both caregivers and care recipients. Community-based therapeutic choir singing offers opportunities for music participation and social engagement that are accessible and mutually enjoyable for people with dementia and their family caregivers and promotes shared and meaningful musical interactions, which may support relationship quality. This study aimed to investigate the impact of the Remini-Sing therapeutic choir intervention on relationship quality, quality of life, depression, and social connectedness for dyads, as well as caregiver burden and care recipient anxiety. A randomized-controlled trial design was used with a target sample of 180 dyads. Due to recruitment difficulties, 34 participant dyads were recruited and randomly assigned to a 20-week group singing condition (n = 16) or a waitlisted control group (n = 18). Participant dyads consisted of people with dementia and their family caregivers who resided at home in the community. The Remini-Sing therapeutic choirs were held in community settings. Assessments were conducted by masked assessors at baseline, 11 weeks, and 21 weeks. Twenty-one dyads completed assessments at the primary timepoint (Week 11). Issues with recruitment and retention resulted in an unpowered study with no statistically significant findings. Mean decreases in anxiety and depression for choir participants with dementia were supported by medium to large effect sizes, indicating a potential intervention effect to be explored in future powered studies. Key learnings related to study design are discussed regarding recruitment, retention, participant burden, and sustainability, with recommendations made for future dementia research., (© The Author(s) 2024. Published by Oxford University Press on behalf of American Music Therapy Association.)

Objectives: Previous studies have examined the psychological burden of caregivers of patients with dementia. However, although many caregivers struggle to assist patients with dementia with medication management, the relationship between assisting such patients with taking their medicines and the caregiver psychological burden is understudied. Therefore, this study identified the association between caregivers' psychological burden and assisting patients with dementia with taking medication., Methods: A cross-sectional survey was conducted among caregivers of patients with dementia in Japan. The survey questionnaire included questions that assessed the symptoms of patients with dementia, their status of taking medication through medication assistance from caregivers, and caregivers' psychological burden using the Kessler Psychological Distress Scale and the Japanese version of the Perceived Stress Scale., Key Findings: A total of 57 caregivers participated in the study. Higher Kessler Psychological Distress Scale scores were significantly associated with unsuccessful assistance with taking regular medication (β = 0.35, 95% confidence interval [CI]: 2.23-12.0, P < .05), depressive symptoms (β = 0.26, 95% CI: 0.10-8.53, P < .05), and irritability (β = 0.38, 95% CI: 2.71-11.5, P < .05). Likewise, higher scores on the Japanese version of the Perceived Stress Scale were significantly associated with irritability (β = 0.37, 95% CI: 1.87-12.5, P < .05) among patients with dementia., Conclusion: The findings suggest that caregiver psychological burden is associated with unsuccessful assistance with taking regular medication for patients with dementia., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Royal Pharmaceutical Society. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: People living with dementia and their carers often experience difficulties in effectively managing medications and have indicated they lack necessary support, information and guidance. Recognising the medication management information needs of this population is an important first step in addressing these issues., Objectives: To identify the priorities for information on medication management expressed by people living with dementia and their carers., Methods: A scoping review with systematic search was conducted from inception to 12 May 2023 for any original studies that reported the information needs of people living with dementia and their carers (informal, i.e. unpaid or within an existing relationship) regarding medication management. Two authors independently screened the abstracts, full-texts and extracted data. Study characteristics were described descriptively, and themes of information need were extracted using an iterative approach., Results: Of the 11 367 records screened, 35 full-texts were included. All studies (n = 35) involved carers, with 17 also including people living with dementia. Most studies (n = 30) were conducted in the community and used qualitative methods (n = 32). Five major themes of information need were identified: critical medication information; medication effects; medication indication(s); disease progression and impact on medications; and safe and appropriate administration of medications. People living with dementia and their carers indicated they need more medication management information generally and want it simple, tailored and relevant., Conclusions: This review highlights the key medication information priorities for people living with dementia and their carers and will help guide the provision of medication management guidance and development of new information resources., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Objective: Household chaos, defined as a lack of organization, structure, and predictability, has been linked to deleterious childhood health outcomes and may hinder attempts to initiate and maintain healthy lifestyle changes. This study examined the associations of household chaos and obesity-related health conditions in a sample of youth being treated for obesity., Methods: Participants were 715 patients (61.8% girls; Mage = 12.3 years; 68.7% non-Hispanic Black; M% of 95th BMI %-ile = 146.9%) enrolled in a pediatric weight management clinic. Caregiver report of household chaos was measured using the Confusion, Hubbub and Order Scale (CHAOS). Physiological obesity-related comorbidities (e.g., insulin resistance, hypertension, dyslipidemia) were assessed by a medical clinician and abstracted from electronic medical records; health conditions were dichotomized as present or not present. Psychological functioning was measured with the Pediatric Symptom Checklist, a caregiver-completed mental health screen that assesses internalizing, externalizing, and attention concerns., Results: The Wilcoxon rank-sum test was used to test differences in household chaos scores for each obesity-related health condition. Caregivers of youth diagnosed with hypertension and obstructive sleep apnea reported significantly lower levels of household chaos, while caregivers who reported clinical levels of psychological dysfunction reported higher levels of chaos., Conclusions: Traditional management of childhood obesity requires changes across multiple health domains (e.g., dietary, exercise, sleep), and such change may be facilitated by structure and consistency. Present findings suggest that psychological resources within pediatric weight management settings should address individual patient-level factors associated with physiological and mental health as well as household functioning., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background and Objectives: The scarcity of resources and available caregiving services in rural areas in the United States has been well documented. However, less research has compared unmet service needs between caregivers of people with Alzheimer's disease and related dementias (ADRD) in rural versus urban areas., Research Design and Methods: Using semistructured interviews guided by theories of health service use and dependent care, we interviewed 20 family caregivers residing in rural areas of Western North Carolina and 18 caregivers within the urban setting of Houston, Texas, and compared their unmet service needs and contextual factors that facilitate their service use., Results: Thematic analyses revealed similar unmet service needs among rural and urban caregivers; however, the ways they approached and solved their challenges differed. Caregivers in rural areas wished for more information and caregiver support whereas urban caregivers looked for information they needed until they found the answers. Rural caregivers expressed guilt about using services because they felt they were limited and zero-sum whereas urban caregivers shared available resources so that other caregivers could use them as well. Unmet service needs for urban caregivers included more racially and ethnically specific services for people with ADRD in their ethnic-specific languages and foods while rural caregivers' cultural needs were not racially and ethnically specific but for more place-specific services., Discussion and Implications: Recommendations for rural caregivers included utilizing online and virtual opportunities and expanding their reach across the United States. For urban caregivers, increasing culturally tailored service options would likely increase access and use., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Considering the high rates of persistent tobacco use, effective cessation interventions are needed for cancer patients and caregivers. Despite the need, there is a significant lack of research on tobacco cessation, especially for non-respiratory cancers (breast, prostate, colorectal, cervical, and bladder cancer)., Purpose: The objective was to evaluate tobacco use and tobacco cessation interventions among patients and caregivers for non-respiratory cancers., Methods: Randomized controlled trials assessing tobacco cessation interventions were identified. Five electronic databases were searched in accordance with the Preferred Reporting Items for Systematic reviews and Meta-analyses guidelines through July 2023. Studies exclusive to lung, oral, thoracic, and head and neck cancers were excluded. Effect sizes were estimated; risk of bias was assessed., Results: Of 3,304 studies, 17 were included. Interventions included behavioral (n = 6), pharmacotherapy (n = 2), and a combination (n = 9) treatment. Eight studies included a health behavior model; mean behavioral change techniques were 5.57. Pooled magnitude of the odds of cessation was positive and significant (odds ratio = 1.24, 95% confidence interval [Lower Limit 1.02, Upper Limit 1.51]) relative to usual care/placebo. Cumulative meta-analysis examined the accumulation of results over-time and demonstrated that studies have been significant since 2020. Two studies included caregivers' who were involved in the provision of social support., Conclusions: Current interventions have the potential to reduce tobacco use in non-respiratory cancers. Results may be beneficial for promoting tobacco cessation among non-respiratory cancers. There is a considerable lack of dyadic interventions for cancer survivors and caregivers; researchers are encouraged to explore dyadic approaches., (© Society of Behavioral Medicine 2024. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Family and professional caregivers of individuals with dementia often witness care-receiver's lucidity events., Objective: A qualitative data analysis was performed of documented family and professional caregivers' experiences and their respective appraisals of lucidity events., Research Design and Methods: Using a reduction method of selection, data from 10 in-home family caregivers and 20 professional caregivers to long-term care residents was content-coded and analysed. Framed by a priori research questions, a summative approach to qualitative content analysis guided the interpretation of findings., Results: Eight of 10 family- and 15 of 20 staff caregivers gave an example of what they believed was a witnessed lucid event; 88% of family- and 40% of staff caregivers' provided examples that appeared to fit the conceptual definition of lucidity. The emotional impact that the events had on both sets of caregivers was reported. Family caregivers' characterization of lucidity events reflected appraisals of a puzzling occurrence while staff caregivers depicted elements associated with dementia, and lucidity descriptors. The enhanced verbal communication followed by the brief, unexpected quality of lucidity, were the main elements highlighted by both sets of caregivers in their description of lucidity to others. The variability and complexity of the lucidity phenomenon and the potential challenges it poses for both sets of caregivers were characterized. Commonalities and divergences across responses were highlighted., Discussion: Findings validated previous studies' results. The notions introduced by both types of caregivers were thought-provoking and borne practical, clinical, ethical, and assessment (measurement) applicability., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Introduction: We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year., Methods: In 2021-2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data., Results: 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) 'Someone to talk to helps dyads feel supported'; (B) 'NIDUS-Family helps carers change their perspective'; (C) 'Personalisation helps people living with dementia maintain their identity' and (D) 'Small steps help dyads move forward'., Conclusion: Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background and Objectives: Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes., Research Design and Methods: We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework., Results: Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers., Discussion and Implications: Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Physical activity improves physical and psychological health in cancer survivors. This study evaluated Active Living After Cancer (ALAC), a community-based program to improve physical activity, physical function, and quality of life (QOL) in minority and medically underserved cancer survivors and their caregivers., Methods: Participants completed 12 weekly ALAC sessions and assessments of physical activity, physical functioning, and QOL at baseline and follow-up (week 12). Paired samples t tests were used to assess changes in outcomes over time., Results: A total of 540 cancer survivors (mean age = 61.1 [SD = 11.3] years) and 87 caregivers (mean age = 62.3 [SD = 13.1] years) were enrolled. Most were women (91.4%), Hispanic (61.1%) or non-Hispanic Black (19.3%), and medically underserved (86.4%). The percent of cancer survivors meeting physical activity recommendations increased from 28.9% to 60.2% (d = 0.75), and the number of sit-to-stand repetitions in a 30-second period increased from 12.3 to 14.3 (d = 0.39) from 0-12 weeks. Cancer survivors reported statistically significant improvements in physical (t score Δ = 1.7, d = 0.06) and mental (t score Δ = 2.3, d = 0.31) health-related QOL. Caregivers also improved their physical activity, physical function, and QOL, and there were no statistically significant differences between breast and other cancer survivors and between cancer survivors and caregivers., Conclusions: The ALAC program demonstrated increased physical activity, physical function, and QOL in medically underserved cancer survivors and their caregivers. Furthermore, ALAC was successfully implemented by community partners and serves as a good model for reaching medically underserved cancer survivors and improving survivorship. Additional efforts are warranted to further extend reach, improve cancer survivorship, and reduce cancer health disparities among underserved cancer survivors., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background and Objectives: Amyloid positron emission tomography scans can enhance the accuracy of dementia diagnoses. However, the perspectives and experiences of people with cognitive impairment and their care partners undergoing an amyloid scan are less well understood. Therefore, this review aimed to identify and summarize qualitative studies exploring patient and care partner experiences of undergoing an amyloid scan., Research Design and Methods: We searched Embase, MEDLINE, and PsychInfo in March 2024. Articles were screened for inclusion by 2 reviewers and critically appraised using the Joanna Briggs Institute Critical Appraisal Tool for Qualitative Studies. Data from the included studies were synthesized using thematic synthesis., Results: We identified 10 papers from 6 studies. We identified 4 themes: (1) motivations for undergoing an amyloid scan, (2) experiences of receiving the result, (3) emotional responses to the result, and (4) actions in light of the scan result. Participants reported undergoing the scan to determine the cause of cognitive impairment. They described the information gained from the scan as helpful but struggled to recall the correct terminology or implications of the scan. Emotional responses to the scan varied depending on the scan result. In light of the scan result, the most common action was making advanced plans; however, this was mainly discussed among participants with elevated amyloid., Discussions and Implications: Amyloid scans can provide useful and actionable information. However, learning the scan result could be distressing. Future research is needed to balance the potential benefits and harms of amyloid scans., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Older adults experiencing neurocognitive disease (NCD) contend with complex care often characterized by high emotional strain. Mitigating complex care with decision support tools can clarify options. When used in conjunction with the practice of shared decision making (SDM), these tools can improve satisfaction and confidence in treatment. The use of these tools for cognitive health has increased, but more is needed to understand how these tools incorporate social needs into treatment plans., Research Design and Methods: We conducted an environmental scan using a MEDLINE-informed search strategy and feedback from an expert steering committee to characterize current tools and approaches for engaging older adults experiencing NCD. We assessed their application and development, incorporation of social determinants, goals or preferences, and inclusion of caregivers in their design., Results: We identified 11 articles, 7 of which show that SDM helps guide tool development and that most center on clinical decision making. Types of tools varied by clinical site and those differences reflected patient need. A collective value across tools was their use to forge meaningful conversations. Most tools appeared designed without the explicit goal to elicit patient social needs or incorporate nonclinical strategies into treatment plans., Discussion and Implications: Several challenges and opportunities exist that center on strategies to engage patients in the design and testing of tools that support conversations with clinicians about cognitive health. Future work should focus on building and testing adaptable tools that support patient and family social care needs beyond clinical care settings., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Little is known about how to prevent falls in community-dwelling older people with dementia. Although their care partners adopt various behaviors to prevent their falls, it is unclear if these behaviors reduce falls for those with different levels of fall risk., Research Design and Methods: Linking the 2015 and 2016 National Health and Aging Trends Study and the 2015 National Study of Caregiving (NSOC), we identified 390 community-dwelling older people with dementia with 607 care partners. We selected 26 NSOC items representing fall risk management (FRM) behaviors. We examined the prevalence and dimensionality of these behaviors and investigated associations between care partners' behaviors in 2015 (T1) and older people's falls in 2016 (T2) stratified by their fall incidence at T1, adjusting for covariates., Results: Five domains of FRM were identified: mobility and safety assistance, medical service coordination, health management, social service coordination, and accommodation. For those who did not fall at T1, mobility and safety assistance and social service coordination were each associated with an increased risk of falling at T2 (adjusted incidence rate ratio [aIRR] = 1.39, 95% confidence interval [CI] = 1.06-1.83, p = .019, aIRR = 1.25, 95% CI = 1.01-1.55, p = .043). For those who had fallen at T1, social service coordination was associated with a decreased risk of falling at T2 (aIRR = 0.83, 95% CI = 0.73-0.94, p = .004)., Discussion and Implications: The different impacts of dementia care partners' FRM behaviors emphasize the need to address specific behaviors when involving care partners in preventing falls for older people with dementia at varying levels of fall risk., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Few proven dementia-care programs are integrated into community-based agencies. We report on the acceptability and effectiveness of an evidence-based program, Care of People in their Environment (COPE), delivered by community-based agency staff., Research Design and Methods: Pretest/post-test design with 3 data points (baseline, 3-month program completion, 6-month follow-up). COPE was delivered by 6 occupational therapists and 4 social workers at 2 agency sites with people living with dementia and caregivers. Staff assessed the interests and abilities of people living with dementia, home safety, caregiver challenges, and readiness to learn strategies. Staff provided dementia education, stress reduction, and nonpharmacological techniques tailored to caregiver-identified challenges. Acceptability (3- and 6-months), included completed sessions, upset with and confidence managing care challenges, strategies used, and program satisfaction. Effectiveness (3- and 6-months) included people living with dementia's health events (falls, emergency room visits, hospitalizations, and 911 calls), rehospitalization risk and functional dependence; and caregiver well-being and readiness. Benefits by in-person (n = 188) versus virtual/hybrid (n = 46) delivery due to Coronavirus Disease-2019 were evaluated., Results: Of 843 dyads screened, 271 (32.1%) enrolled, 246 (90.8%) completed COPE, and 234 (95.1%) completed ≥1 follow-up. Regarding acceptability, caregivers completed about 8 sessions, reported improved confidence and upset (p < .001), most implemented strategies 3-months (72.8%) and 6-months (83.5%), and expressed high program satisfaction. For effectiveness, compared to baseline, odds of people living with dementia's health events were lower including rehospitalization risk, although functional dependence increased; caregiver well-being (3-, 6-months, p < .001) and readiness (3-months, p < .01) improved. Outcomes did not differ by delivery mode., Discussion and Implications: Acceptability and effectiveness were strong. COPE resulted in tangible improvements for families regardless of delivery mode., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Objective: Due to systemic inequities, Black adolescents with type 1 diabetes are more likely to have suboptimal glycemic control and high rates of diabetes distress, but tailored interventions for this population are lacking. In primary outcomes of a randomized clinical trial, a family-based eHealth intervention improved glycemic control in Black adolescents with type 1 diabetes and elevated depressive symptoms. The present study is a secondary analysis of these clinical trial data examining the moderating effect of diabetes distress on the efficacy of the intervention., Methods: Using secondary data from a multicenter randomized clinical trial (Clinicaltrials.gov [NCT03168867]), caregiver-adolescent dyads were randomly assigned to either up to three sessions of an eHealth parenting intervention (n = 75) or a standard medical care control group (n = 74). Black adolescents (10 years, 0 months to 14 years, 11 months old) with type 1 diabetes and a caregiver willing to participate were eligible. Adolescents reported their diabetes distress at baseline, and hemoglobin A1c (HbA1c) data were collected at baseline, 6-, 13-, and 18-month follow-up., Results: No between-group contrasts emerged in a linear mixed-effects regression (p's > .09). Within-group contrasts emerged such that adolescents assigned to the intervention who reported high diabetes distress had lower HbA1c at the 18-month follow-up relative to baseline (p = .004); the 18-month decrease in HbA1c was -1.03%., Conclusions: Black adolescents with type 1 diabetes and high levels of diabetes distress showed significant decreases in HbA1c following a family-based eHealth intervention, suggesting diabetes distress may be a key moderator of intervention efficacy within this population., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in chronic kidney disease (CKD), which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients/caregivers and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy, and to describe the reasons for their choices., Methods: This was an online two-round international Delphi survey. Adult patients with CKD (all stages and diagnoses), caregivers and health professionals who could read English, Spanish or French were eligible. Participants rated the importance of outcomes using a Likert scale (7-9 indicating critical importance) and a Best-Worst Scale. The scores for the two groups were assessed to determine absolute and relative importance. Comments were analysed thematically., Results: In total, 1399 participants from 73 countries completed Round 1 of the Delphi survey, including 628 (45%) patients/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death. In the final round, patients/caregivers indicated higher scores for most outcomes (17/22 outcomes), and health professionals gave higher priority to mortality, hospitalization and cardiovascular disease (mean difference >0.3). Consensus was based upon the two groups yielding median scores of ≥7 and mean scores >7, and the proportions of both groups rating the outcome as 'critically important' being >50%. Four themes reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences., Conclusion: Across trials in CKD, the outcomes of highest priority to patients, caregivers and health professionals were kidney function, need for dialysis/transplant, life participation, cardiovascular disease and death., (© The Author(s) 2024. Published by Oxford University Press on behalf of the ERA.)

Aims: This study aims to (i) test the validity and reliability of the Care Dependency Scale (CDS) for patients with heart failure (HF) and (ii) test the validity and reliability of the proxy version of the CDS assessing informal caregivers' perception of the dependency level of individuals with HF., Methods and Results: Secondary data analysis was conducted of transnational multicentre cross-sectional design study. A convenience sample comprised of HF patients-informal caregivers' dyads in three European countries. The CDS was administered to patients and the proxy version to informal caregivers. Factorial validity was tested for each scale using confirmatory factor analysis. Reliability was evaluated with the composite coefficient and Cronbach's alpha. Construct validity was tested via known group differences. Measurement error was tested to assess responsiveness to changes. A total of 229 patients and 208 caregivers were recruited. Confirmatory factor analysis supported the two-factor structure (Physical Care Dependency and Psychosocial Care Dependency) of the CDS in both HF patients and their caregiver. Reliability estimates were adequate for all reliability coefficients. Construct validity was supported. The measurement error was adequate., Conclusion: The scale shows acceptable validity and reliability and can be useful for care dependency assessment of patients with HF and their informal caregivers. Further research is needed for assessing the validity and reliability in other cross-cultural settings. The use of the CDS has the potential to effectively enable the development of pertinent care plans, taking dependency into consideration including the perspective of both members of the dyad as a whole., Competing Interests: Conflict of interest: None declared., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

This study was conducted to determine the effect of Mindfulness-Based Compassionate Living (MBCL) training given to the informal caregivers of palliative patients on burnout and caregiving burden. A single-blind, randomized, controlled, experimental study was conducted with 54 caregivers of patients admitted to a hospital palliative care unit. The participants were randomly allocated to the experimental group (n = 26) and control group (n = 28). The experimental group received MBCL training twice a week for 4 weeks. Data were collected before and after the intervention using the Maslach Burnout Inventory, Caregiver Burden Scale and Self-Compassion Scale-Short Form. The data were analyzed using kurtosis and skewness coefficients, number, percentage, mean, standard deviation, chi-square test, independent samples t test, Wilcoxon signed ranks test and Mann-Whitney U test in SPSS version 22.0. The informal caregivers in the experimental group demonstrated a significant decrease in emotional exhaustion and depersonalization scores and an increase in personal accomplishment and self-compassion scores in posttest assessments after the MBCL intervention (P < 0.05). All of these parameters differed significantly between the experimental and control groups after the intervention (P < 0.05). MBCL training seems to be effective in reducing emotional exhaustion and depersonalization and increasing personal accomplishment and self-compassion among informal caregivers of palliative inpatients. The results of this study can be generalized to the caretakers of patients receiving palliative care in university hospitals., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Kids SIPsmartER is a 6-month behavioral and health literacy intervention effective at reducing sugar-sweetened beverage (SSB) intake among middle school students and their caregivers in the rural Appalachian region. This exploratory mixed methods study utilized a convergent parallel design to assess participant acceptability of a school-based curriculum for students and a text messaging program for caregivers. Acceptability was assessed using surveys (873 students and 453 caregivers), five focus groups (34 students) and telephone interviews (22 caregivers). Quantitative data were analyzed descriptively, and qualitative data were content coded. On a 5-point scale, average quantitative survey acceptability ratings ranged from 2.7 to 3.3 among three student-rated questions and 4.1 to 4.2 among four caregiver-rated questions. Qualitative focus group findings suggested that students preferred curricular activities that were hands-on and involved social interaction, while caregiver interview results showed high acceptability of the text messaging program's design, including usability, content messages and personalization. Students and caregivers reported similar program benefits: increased knowledge of SSBs and health risks, increased awareness of SSB behaviors and support to make beverage behavior changes. Results from this study can be used to understand Kids SIPsmartER's effectiveness data, communicate the intervention's acceptability with stakeholders and plan for future implementation studies., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site–for further information please contact journals.permissions@oup.com.)

Introduction: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time., Methods: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations., Results: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective)., Conclusions: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services., (© The Author(s) 2024. Published by Oxford University Press.)

The Scottish Intercollegiate Guidelines Network (SIGN) have recently published their guideline SIGN168 on 'Assessment, Diagnosis, Care, and Support for People with Dementia and their Carers'. The guideline makes evidence-based recommendations for best practice in the assessment, care and support of adults living with dementia. Topics featured in this guideline are limited to those prioritised by stakeholders, especially people with lived and living experience, and those not well covered under pre-existing guidance. We summarise the guideline recommendations related to identification and diagnosis of dementia, investigative procedures, postdiagnostic support living with dementia, including non-pharmacological approaches for distressed behaviours, using technology to support people with dementia, grief and dementia and changing needs of people with dementia. The guideline content is summarised as officially published, with additional commentary in the final section., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: Vietnam's healthcare system offers limited services and facilities for older adults. This study explored the perceptions of health and social care workers regarding geriatric care issues, their impact on older adults and the potential of collaboration for enhancing older adults' health and well-being., Methods: This qualitative case study employed 27 focus group discussions and two in-depth interviews with 174 participants in Thua Thien Hue Province, Vietnam. An inductive thematic analysis was conducted., Results: According to the participants, the major challenges that hindered geriatric care consisted of caregiver and care recipient issues, which were identified to constrain care accessibility, resulting in decreased physical, mental and social health. Across different settings and professions, collaboration was considered a routine and natural aspect of daily work. It was perceived that establishing and strengthening collaboration could facilitate improvement in health and social welfare services through the prioritization of needs and enhancement of caregiver skills and training., Conclusions: Collaboration was viewed as ad hoc but indispensable for addressing the identified geriatric care issues that could improve the general health and well-being of older adults. The findings indicate a need for better collaboration in Vietnam, achieved through defined guidelines, training and improved interprofessional education and practice., (© The Author(s) 2023. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene.)

Background and Objectives: Home- and community-based services (HCBS) are underutilized, despite offering significant health benefits to both care recipients and caregivers. Drawing upon Andersen's extended behavioral model of health services use, we examined individual- and county-level factors influencing HCBS utilization for dementia care in rural Appalachia., Research Design and Methods: We analyzed data from telephone interviews with 123 dementia family caregivers in rural Appalachian counties (Mage = 64.7, SDage = 12.2). Multilevel analyses were conducted to examine the effects of individual-level and county-level factors on the use of home-based services (home healthcare and personal care services) as well as community-based services (adult day care and transportation services)., Results: Results indicated that caregivers' receipt of informal support from family or friends was associated with more use of home-based services (B = 0.42, p = .003). Conversely, longer travel times to service providers were linked to use of fewer community-based services (B = -0.21, p < .001). Residing in counties with more home health agencies was associated with higher utilization of home-based services (B = 0.41, p = .046). However, higher county tax expenditures for HCBS were not linked to home-based or community-based service use., Discussion and Implications: Findings suggest that informal support in caring for the person living with dementia enables HCBS use in rural Appalachia. In contrast, limited geographic accessibility and service availability can impede HCBS use in rural regions. Policymakers are urged to allocate direct public funding to service providers to expand service availability in underresourced rural regions., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Objective: Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF., Methods: 37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence., Results: 43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (β = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant., Conclusions: When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background and Objectives: Family caregivers of persons with dementia face an elevated risk of several chronic illnesses compared to their noncaregiver counterparts. Although exercise is a strong preventive measure for several debilitating health conditions, longitudinal research guided by theoretical frameworks has not identified how behavioral determinants predict exercise among caregivers. This study aimed to investigate how intrapersonal exercise determinants contribute to caregivers' exercise participation while accounting for social-contextual factors, including perceived caregiving burden and pandemic-related distress, by employing an extended Health Belief Model., Research Design and Methods: The study was a longitudinal observational design. Community-dwelling older adult family caregivers of individuals with dementia (n = 127) were recruited with the support of a nonprofit organization. Participants completed measures of the Health Belief Model that also included dual process constructs (intention and habit), along with caregiving burden, pandemic-related distress, and exercise behavior across three consecutive months. Data were analyzed using a multilevel structural equation model with participants (Level 2) nested within time (Level 1)., Results: The model revealed direct effects of caregiving burden that debilitate perceived behavioral control, attitudes, threats, and worsen burden, in addition to hampering intention and habit when accounting for total effects. Pandemic-related distress exacerbated caregiving burden and weakened Health Belief Model constructs via total effects., Discussion and Implications: These findings inform constructs to develop a community-based education program for family caregivers to successfully adopt and maintain exercise behavior. Incorporating supportive resources and coping strategies for caregivers of persons with dementia is needed to address the effects of behavioral deterrents., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: This study examined the performance of the Modified Caregiver Strain Index (MCSI) in a sample of Black and White caregivers of persons living with dementia., Research Design and Methods: Data on 153 dyads enrolled in the Care Ecosystem dementia care management program were analyzed, including sociodemographic variables, dementia severity, and caregiver burden and wellbeing. Factor structure, item-response patterns, and concurrent validity were assessed across racial groups., Results: Differences between Black and White caregivers included gender, dyad relation, and socioeconomic disadvantage. Factor structure and item loadings varied by racial cohort, with parameters supporting a 3-factor model. For Black caregivers, finances and work, emotional and physical strain, and family and personal adjustment items loaded together on individual factors. For White caregivers physical and emotional strain items loaded on separate factors, although personal and family adjustment items loaded with work and financial strain items. Item-level analysis revealed differences between groups, with Black caregivers endorsing physical strain to a greater degree (p = .003). Total MCSI scores were positively correlated with concurrent measures like the PHQ-9 (White: r = 0.67, Black: r = 0.54) and the GAD-2 (White: r = 0.47, Black: r = 0.4), and negatively correlated with self-efficacy ratings (White: r = -0.54, Black: r = -0.55), with a p < .001 for all validity analysis., Discussion and Implications: The MCSI displayed acceptable statistical performance for Black and White caregivers of persons living with dementia and displayed a factor structure sensitive to cultural variations of the construct. Researchers results highlight the inherent complexity and the relevance of selecting inclusive measures to appropriately serve diverse populations., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

This essay argues for a fuller integration of ageism and age discrimination into the productive aging framework. We briefly review the productive aging scholarship and the extent to which ageism has been considered in regard to working, volunteering, education, and caregiving. We suggest that ageism has not been adequately considered, and we identify how it permeates productive engagement in later life. We introduce modifications to the productive aging framework to more directly capture the roles of ageism and age discrimination in activity engagement and the outcomes achieved. We argue for the integration of key concepts from minority stress theory and critical race theory that may yield important insights for an increasingly diverse older population. We conclude with research directions that will guide intervention development to reduce ageism at the societal, organizational, and individual level., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time., Research Design and Methods: We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis., Results: Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for., Discussion and Implications: Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Caregivers of persons with dementia are frequently spouses. Caregiver hospitalization causes disruption to caregiving. The goal of this research was to understand the preparedness and stress trajectory of peri-caregiver hospitalization., Research Design and Methods: Mixed methods were used. Caregivers of spouses with dementia (n = 1,000) were surveyed to determine their perceived preparedness for their own hospitalization. Journey mapping interviews (n = 18) were used to map caregivers' experiences during 5 phases: (a) their spouse with dementia (SWD)'s dementia diagnosis; (b) their SWD's dementia progression; (c) their own health event; (d) their own hospitalization; and (e) their own return home from the hospital., Results: Among the 452 (45%) eligible caregiver survey respondents, 75 (17%) had experienced hospitalization in the previous 12 months and 51 (68%) hospitalizations were unexpected. Twenty-three (31%) of hospitalized caregivers indicated they did not have prior plans in place for the care of the SWD. When asked about an unexpected hospitalization in the future, 233 (52%) felt somewhat prepared and 133 (29%) felt not at all prepared. Journey mapping revealed 3 groups of caregivers: Group 1 (n = 7) rated their stress lower during their hospitalization, Group 2 (n = 7) rated their stress highest during their hospitalization, and Group 3 (n = 4) were at a sustained high-stress level., Discussion and Implications: Many caregivers are not prepared for their own hospitalization. The stress trajectory through important phases of dementia caregiving and a caregiver's own hospitalization is not universal. Meeting the needs of caregivers' peri-hospitalization should be tailored to the individual caregiver., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background and Objectives: Care partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks., Research Design and Methods: This study used a parallel mixed-methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data., Results: Care partners were, on average, 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p < .001); lower- and higher-income care partners (p = .01); and adult child versus spousal care partners (p < .001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences., Discussion and Implications: It is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: There are a growing number of early-phase (i.e., Stage I, NIH Stage Model) interventions targeted at family care dyads navigating chronic health conditions in older adults. Currently, the benefits of these interventions are often evaluated for older adults and their family care partners separately, even when controlling for interdependence. Without understanding the benefits (and potential harms) for dyads as a whole, understanding of program impact is incomplete. Moreover, few health behavior interventions involving dyads include relational measures to ensure no unintended consequences for the dyad or account for within-dyad pretest risk level., Research Design and Methods: We used secondary data from a quasi-experimental trial involving 39 couples in which 1 member of the dyad was living with Parkinson's disease as an exemplar demonstration of 3 proposed approaches: an above-zero approach, a pretest risk status approach, and an expanded pattern analysis matrix approach., Results: Approaches provided evidence for dyadic benefits of the intervention compared to the wait-list comparison condition, but carried different assumptions that did not always categorize dyads similarly., Discussion and Implications: Implications of using each approach and selecting different benchmarks for defining success are discussed. The descriptive approaches proposed, provide a rationale for more intentional evaluation of small-sample, early-phase dyadic interventions., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Approximately 60% of people living with dementia at home are unable to routinely participate in mealtime activities (e.g., eating, safe food preparation), warranting assistance to ensure people with dementia meet their health and nutritional needs. The purpose of this study was to characterize these barriers to mealtime participation and identify potential caregiver-led strategies to enhance mealtime activities., Research Design and Methods: We used a qualitative descriptive approach and obtained semistructured interview data from (a) allied health professionals and (b) community-based nutrition program providers who frequently serve people with dementia. Interview data were examined by means of directed content analysis and framework methodology until data saturation was reached. Codes from our analysis were categorized according to constructs drawn from the Socio-Ecological Model for Developing and Implementing Comprehensive Dementia Care., Results: Data were obtained from 20 participants who attributed common mealtime participation barriers to: impairments in functional status, cognitive status deficits, a lack of caregiver knowledge and skills, and unsafe living conditions. Caregiver-led strategies to overcome these barriers included: reducing auditory and visual distractions, providing written cues to perform mealtime activities, eliminating clutter and fall risk hazards, and leveraging community-based nutrition program providers (e.g., home-delivered meal providers)., Discussion and Implications: People with dementia face several eating and mealtime participation obstacles. Caregiver-led strategies implemented by family, friends, or community-based nutrition program providers may enhance mealtime activities at home. Findings point to opportunities to develop decision-making tools and resources for caregivers to optimize the health and nutrition of people with dementia., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Emerging evidence suggests music-based interventions can improve the well-being of people living with dementia, but little is known about the ways in which music might support dementia caregiving relationships as part of everyday life at home. This study examined music engagement in the context of daily life to identify patterns of music engagement and potential targets for the design of music-based interventions to support well-being., Research Design and Methods: This ethnographic, in-home study of people living with dementia and their family and professional care partners used methods from ethnomusicology, including semistructured interviews and in-home participant observation with a focus on music engagement., Results: A total of 21 dyads were purposively recruited for diversity in terms of gender, ethnicity/race/heritage, caregiving relationship, and music experiences. Despite participants' diverse music preferences, 3 distinct music engagement patterns emerged. (a) Professional care partners intentionally integrated music listening and singing into daily life as part of providing direct care. (b) Family care partners, who had prior dementia care nursing experience or family music traditions, integrated music into daily life in ways that supported their personal relationships. (c) In contrast, family care partners, who lacked dementia care experience and had high levels of caregiver burden, disengaged from prior music-making., Discussion and Implications: The distinct music engagement patterns reflect different needs on the part of dyads. It is important to continue to support dyads who engage in music daily and to consider developing music-based interventions to support well-being among dyads who have become disengaged from music., (Published by Oxford University Press on behalf of The Gerontological Society of America 2023.)

Objectives: Adolescents with type 1 diabetes (T1D) and their caregivers endorse high diabetes distress (DD). Limited studies have documented the impact of DD on Black youth. The aims of the present study were to (1) describe DD among a sample of Black adolescents with T1D and their caregivers, (2) compare their DD levels with published normative samples, and (3) determine how DD relates to glycemic outcomes, diabetes self-management, parental monitoring of diabetes, and youth depressive symptoms., Methods: Baseline data from a multicenter clinical trial were used. Participants (N = 155) were recruited from 7 Midwestern pediatric diabetes clinics. Hemoglobin A1c (HbA1c) and measures of DD, parental monitoring of diabetes care, youth depression and diabetes management behaviors were obtained. The sample was split into (1) adolescents (ages 13-14; N = 95) and (2) preadolescents (ages 10-12; N = 60). Analyses utilized Cohen's d effect sizes, Pearson correlations, t-tests, and multiple regression., Results: DD levels in youth and caregivers were high, with 45%-58% exceeding either clinical cutoff scores or validation study sample means. Higher DD in youth and caregivers was associated with higher HbA1c, lower diabetes self-management, and elevated depressive symptoms, but not with parental monitoring of diabetes management., Conclusions: Screening for DD in Black youth with T1D and caregivers is recommended, as are culturally informed interventions that can reduce distress levels and lead to improved health outcomes. More research is needed on how systemic inequities contribute to higher DD in Black youth and the strategies/policy changes needed to reduce these inequities., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Lymphoma has become 1 of the 10 most common cancers with increased prevalence in young- and middle-aged adults in China. This poses a tremendous burden on patients and their families and brings great challenges to maintaining the balance of family functioning in young- and middle-aged patients., Objective: This cross-sectional study aimed to analyse the influence of resourcefulness on the family functioning of Chinese young- and middle-aged lymphoma patients., Methods: A total of 172 Chinese young- and middle-aged patients with lymphoma were recruited from the oncology departments of two tertiary hospitals in Zhengzhou, Henan, China. They were invited to complete a survey that included a demographic questionnaire, the Resourcefulness Scale and the Chinese Version Family Adaptability and Cohesion Scale II. Multiple linear regression was used to analyse the related factors for family functioning., Results: The multiple regression analysis revealed that the main influencing factors of family cohesion were resourcefulness (β = 0.338, 95% CI (0.072, 0.173)), spouse caregiver (β = 0.376, 95% CI (1.938, 10.395)), and cancer stage (β = -0.274, 95% CI (-3.219, -1.047)). Resourcefulness (β = 0.438, 95% CI (0.096, 0.181)), spouse caregiver (β = 0.340, 95% CI (1.348, 8.363)), and family per capita monthly income (β = 0.157, 95% CI (0.066, 2.243)) were the influencing factors of family adaptability., Conclusions: Healthcare professionals and family scholars should value young- and middle-aged lymphoma patients' family functioning throughout the cancer treatment process, and family interventions should be designed by healthcare providers based on patients' resourcefulness. Moreover, healthcare providers need to pay attention to the risk factors of patients' family cohesion and adaptability, such as low family per capita monthly income, and consider employing corresponding measures to help them., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)