Primary Informal Caregivers Research Articles

Evidence of Psychometric Properties of The Informal Primary Family Caregiver Self-Care Capacity Scale

Objective: to analyze the psychometric properties of the Informal Primary Family Caregiver Self-Care Capacity Scale. Methodology: this is a methodological, descriptive, and analytical study, with a sample consisting of 151 informal primary family caregivers from various cities in southern Minas Gerais. The sample was non-probabilistic by convenience. Instruments used: Sociodemographic and health characterization of informal primary family caregivers and the Informal family caregiver self-care capacity scale. This study was approved by the Research Ethics Committee under No. 5.131.517. Results: After exploratory factor analysis, the scale consisted of 22 items and six domains with a Cronbach's alpha above 0.788 for domains 1, 2, 3, 6, and the full scale, and 0.6 for domains 4 and 5. In terms of discriminant validity, the Caregiver Self-Care Capacity Scale was classified in the following domains: 1- Personal care; 4- Social aspects and 6- Religiosity and Spirituality with Education; 6- Religiosity and Spirituality with Time spent as a caregiver and 4- Social aspects with the Reason for being a caregiver. The associations were positive and significant (p=< 0.05). Conclusion: the Scale showed adequate psychometric properties for use in the Brazilian setting, both in research and in care.

Evidence of The Psychometric Properties of The Feelings of The Informal Primary Family Caregiver Scale

Objective: to analyze the psychometric properties of the Feelings of the Informal Primary Family Caregiver Scale. Methodology: This is a methodological, descriptive, and analytical study. The sample consisted of 115 informal primary family caregivers from a city in the south of Minas Gerais. The sample was a non-probabilistic convenience sample. The Information and Feelings of the Informal Primary Family Caregiver instrument was used, which consisted of two sections. The first section was entitled Information on the Caregiver's Daily Life and consisted of close-ended questions with only one answer option. The second section consisted of the Feelings Scale, containing 17 items and four factors, namely: Life and health compromises; Mental health compromises; Perspectives on providing care and Insecurities on providing care. Each item has five answer options, as follows: Never (5 points); Almost Never (4); Sometimes (3); Almost Always (2); and Always (1). The minimum score on the scale is 17 points and the maximum is 85. This study was approved by the Research Ethics Committee of a Federal Higher Education Institution. Results: After exploratory factor analysis, the scale consisted of 17 items and four factors with a Cronbach’s alpha of 0.8 for Factors 1, 2, and the total scale, and 0.6 for Factors 3 and 4. In discriminant validity, there was discrimination in the caregiver's daily information with the aforementioned scale (p= < 0.05). Conclusion: the Scale showed adequate psychometric properties for use in the Brazilian context, both in research and in care.

Predictors of Coping Strategies in Caregivers of Family Members with a Brain Tumor: A Correlational Study.

Brain tumor patients confront numerous challenges arising from diagnosis and treatment, and these impact the patient's physical, mental, and social functions at all levels. Primary informal caregivers assume a pivotal role in home-based patient care. Of particular importance are the coping strategies employed by family caregivers, as they can influence both their own health and the overall quality of home care. This study aimed to explore the associations among family function, caregiving competence, and coping strategies among primary informal caregivers. This study adopted a cross-sectional correlational design and convenience sampling to survey the primary informal caregivers of 111 brain tumor patients. The study instruments included the Family Assessment Device General Function, Caregiving Competence Scale, and Revised Ways of Coping Checklist. The findings of this study revealed a significant positive correlation between the family function of primary informal caregivers and their employment of emotion-focused coping (r = 0.209, p < 0.05). Furthermore, caregiving competence exhibited a positive association with problem-focused coping (r = 0.242, p < 0.05) and emerged as a significant predictor of problem-focused coping (β = 0.182, p < 0.05). However, neither family function (r = 0.059, p < 0.05) nor caregiving competence (r = 0.031, p < 0.05) demonstrated significant associations with total coping strategies. The findings of this study affirmed that enhancing the caregiving competence of primary informal caregivers of brain tumor patients can facilitate the adoption of problem-focused coping strategies.

Dementia caregiving during the COVID-19 pandemic: an interpretative phenomenological analysis of caregivers' experiences.

To explore the lived experience of informal dementia caregivers during the COVID-19 pandemic. Interpretative Phenomenological Analysis (IPA) was employed. Eight primary informal caregivers were recruited from a community mental health service for older people when attending in their role as caregiver of a service-user. Semi-structured interviews were conducted at home or in the clinic based on the participants' convenience and preference. IPA was completed following Smith and colleagues framework for analysis. Six group experiential themes, each with a number of subthemes, emerged from the cross-case interpretative analysis: the ambivalent experience of caregiving (subtheme: those complex emotional experiences); navigating lockdown: lived challenges and opportunities (subthemes: the pervasive fear, intensification of existing struggles, being prevented from caring for a loved one, and lockdown as a time for opportunity); transitioning out of lockdown (subthemes: regaining freedom, but restricted freedom after all and being in a lockdown of one's own); the present with COVID-19, but mostly with dementia (subthemes: dementia, a disease that does not pause, and 'takeaways' from the journey); looking into the future (subthemes: embracing COVID-19 and the true needs); and a word on coping (subtheme: managing it all as best one can). Findings demonstrate the significance of the meaning caregivers ascribed to their experiences on their wellbeing and ability to cope in times of COVID-19 and thereafter. Gaining an understanding of the caregivers' unique experiences is crucial to appreciate how to best support them.

Social health markers in the context of cognitive decline and dementia: an international qualitative study.

Social health in the context of dementia has recently gained interest. The development of a social health conceptual framework at the individual and social environmental levels, has revealed a critical need for a further exploration of social health markers that can be used in the development of dementia intervention and to construct social health measures. To identify social health markers in the context of dementia. This international qualitative study included six countries: Australia, Germany, Indonesia, Italy, Poland, and the Netherlands. Using purposive sampling, three to five cases per country were recruited to the study, with each case consisting of a person living with dementia, a primary informal caregiver, an active network member, and a health care professional involved in the care of the person with dementia. In-depth interviews, using an agreed topic guide, and content analysis were conducted to identify known and new social health markers. The codes were then categorized against our conceptual framework of social health. Sixty-seven participants were interviewed. We identified various social health markers, ranging from those that are commonly used in epidemiological studies such as loneliness to novel markers of social health at the individual and the social environmental level. Examples of novel individual-level markers were efforts to comply with social norms and making own choices in, for example, keeping contact or refusing support. At a social environmental level, examples of novel markers were proximity (physical distance) and the function of the social network of helping the person maintaining dignity. The current study identified both well-known and novel social health markers in the context of dementia, mapped to the social health framework we developed. Future research should focus on translating these markers into validated measures and on developing social health focused interventions for persons with dementia.

Moderate burden amongst caregivers posthip arthroscopy linked to younger caregiver age and task load: A cross-sectional survey study.

To evaluate the burden experienced by primary informal caregivers of patients who have undergone hip arthroscopy and to identify factors that predict increased caregiver burden. A cross-sectional study was conducted at a single academic hospital centre, enroling caregivers of patients who underwent hip arthroscopy between November 2018 and November 2023. Caregiver burden was assessed using the Caregiver Burden Inventory (CBI) survey. Multivariable linear regression models were used to identify predictors of caregiver burden, with the global CBI score serving as the primary outcome measure. Secondarily, open-ended survey questions were analyzed qualitatively to elucidate specific challenges and facilitators of caregiving, as reported by the caregivers themselves. The study involved 99 eligible caregivers (mean [standard deviation] age; 47 [11] years), 58% were female, and 85% were relatives of the patient. The median global CBI score was 13.0 (interquartile range: 8.0-22.4), indicating a moderate burden. Regression analyses demonstrated that younger caregiver age and a higher number of caregiving tasks were significant predictors of increased global burden. Additionally, nonweightbearing status of patients, female gender of caregivers and working full-time statistically significantly increased specific dimensions of caregiver burden. This study highlights the meaningful burden faced by caregivers of patients undergoing hip arthroscopy, despite its minimally invasive nature and outpatient setting. Identified risk factors such as younger caregiver age, female gender of the caregiver, nonweight-bearing status and increased caregiving tasks suggest targeted areas for intervention. The qualitative analysis revealed that caregivers struggle with time management and physical and emotional strain, yet better communication and practical support from healthcare teams could help to alleviate these challenges. Level IV, prognostic study.

Characteristics of Informal Caregivers and Social Participation of People With Dementia.

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. 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 informalcaregiver 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. 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). 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.

Addressing loneliness and social isolation through the involvement of primary and secondary informal caregivers in nursing homes: a scoping review

ObjectivesTo clarify the mechanisms of interventions addressing loneliness and social isolation in older adults living in nursing homes through the involvement of primary and secondary informal caregivers.MethodsThis scoping review was performed by two independent reviewers, covering the period between 2011 and 2022 and the databases MEDLINE, CINAHL, PsycINFO and Scopus. It included terms related to (A) informal caregivers, (B) nursing homes, (C) psychosocial interventions, (D) involvement and (E) social isolation or loneliness.ResultsThirty-three studies met the inclusion criteria. Although there were various definitions and assessment tools related to social isolation and loneliness, the studies referred to three dimensions of these concepts in nursing home residents: the quantity of social interactions, the perception of these encounters and biographical changes in social relationships. Most studies did not explicate the mechanisms of these interventions. The review uncovered the following aspects of intervention mechanisms: increasing opportunities for social contact, creating meaningful encounters, maintaining existing relationships with primary informal caregivers and establishing new ones with secondary informal caregivers.ConclusionStudies reporting on interventions addressing loneliness and social isolation in nursing home residents need to clarify and detail their intervention mechanisms in order to foster more targeted interventions. In addition, there is a need for further research on large-scale programs or care philosophies in this field and the development of intervention designs, which allow for tailored intervention formats in order to respond to the individual perception of social relationships.

Informal caregiving time and its monetary value in the context of older adults in Singapore

BackgroundLittle is known about the caregiving time of different types of caregivers in Singapore or its monetary value. We quantified the caregiving time of primary informal, secondary informal, and migrant domestic worker (MDW) caregivers of older adults and estimated the monetary value of caregiving time of primary and secondary informal caregivers. Methods278 primary informal caregivers reported the time provided by themselves, secondary informal caregivers and MDW caregivers in a typical week helping their care-recipients, aged ≥75 years, with activities of daily living (ADLs), instrumental ADLs, healthcare and social care use, other needs, and supervision of MDW caregivers. We estimated monetary value using the proxy good method. ResultsOn average, primary and secondary informal caregivers provided 33.0 (annual monetary value: S$15,959) and 8.4 (annual monetary value: S$4,062) caregiving hours/week. MDW caregivers provided even more – 42.0 h/week. Care-recipients received 60.5 h of care/week on average. Nationally, the monetary value of informal caregiving time for Singaporeans aged ≥75 years requiring human assistance was about S$1.28 billion. ConclusionThis study highlights the substantial time commitment of informal and MDW caregivers. Our estimates of the monetary value of informal caregiving time can inform economic evaluations of care models for older adults and policies for supporting informal caregivers, particularly in societies that rely heavily on informal care.

Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.

Dementia with Lewy bodies (DLB) is a common degenerative dementia, but research on caregiver experiences in late stages is lacking. This study aimed to investigate the caregiving experience in moderate-advanced DLB to identify opportunities for improving care and support. Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of the caregiver experience relating to caregiver support, burden, grief, self-efficacy, depression, quality of life, and coping. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of caregiver measures with patient and caregiver variables with adjustments for multiple testing. Caregivers (n = 143) were mostly women (83.5%) and spouses (84.7%) (mean age 68 years; range 37-85). Almost 40% reported high burden and/or depression. Caregiver measures correlated with fluctuation and behavioral symptom severity, sleepiness, and autonomic symptoms of the person with DLB. Higher burden correlated with worse caregiver quality of life, higher depression, and grief. Greater self-efficacy, social support, and resilience correlated with lower caregiver burden. The most frequently reported caregiver concerns were being unable to plan for the future, having to put the needs of the person with DLB ahead of the caregiver's own needs, and worry that the person with DLB would become too dependent on the caregiver, but many additional concerns were endorsed. Caregivers were generally satisfied with medical team support. The lowest reported satisfaction related to information regarding disease progression and how well medical teams shared information with each other. Various patient-related and caregiver-related factors influence caregiver experiences in moderate-advanced DLB. Clinicians can target caregiver needs by providing support resources and DLB education and treating bothersome patient symptoms. Future research should investigate what interventions can modify and improve caregiver experiences in advanced DLB and identify therapeutics for patient symptoms currently without adequate treatments (e.g., fluctuations, daytime sleepiness). NCT04829656.

A fluctuating intensity of care: A qualitative study on the experiences of informal caregivers of patients with critical limb-threateningischemia.

Informal caregivers play a significant role in providing care for older, often vulnerable, patients, and supporting them as they live with chronic diseases. Due to the rising prevalence of older vascular patients and their use of healthcare, the role of their informal caregivers will become more important. However, little is known about the experiences of informal caregivers of patients with critical limb-threatening ischemia and the impact of informal care on different aspects of these caregivers' lives. In addition, literature does not describe the burden this role brings with it, or lack thereof. Therefore a qualitative study using a phenomenological approach, specifically interpretive phenomenological analysis, was used to gain insight into the experiences of the primary informal caregivers of patients with chronic limb-threatening ischemia. Data were collected via semi-structured interviews and focus groups discussions. Fifteen primary informal caregivers of patients with critical limb-threatening ischemia under the care of the vascular surgeon at a tertiary teaching hospital in the Netherlands were included. Data analysis yielded three themes: the perceived identity of this group of caregivers; the varying intensity of informal care; and the collaboration between informal carers, their care recipients and the professional care provider within the vascular surgery department. In contrast to carers of other chronic diseases, the shifting intensity of care that informal caregivers of critical limb-threatening ischemia patients experience seems to prevent long-term overload. Adapting to that fluctuating situation requires flexibility from healthcare providers within the vascular surgery department. In addition, professionals need to involve informal caregivers in the patient's decision-making process and recognize their role in that process.

End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis.

Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias, but research on end-of-life experiences for people with DLB and their caregivers is limited. Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries and followed prospectively every 6 months. The current study examines results of caregiver study visits 3 months after the death of the person with DLB. These visits included the Last Month of Life survey, study-specific questions, and a semi-structured interview querying end-of-life experiences. Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education. Most caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals. Trial registration information: NCT04829656.

Most caregivers who choose tube feeding for a relative with advanced dementia don’t want it for themselves

AbstractBackgroundAlthough long‐term enteral feeding in advanced dementia is not advocated, a significant proportion of people with severe dementia (PWSDs) receive nasogastric tube (NGT) feeding. Often, in the absence of advanced care planning by the PWSDs, their caregivers may need to make pivotal decisions on the issue. Hence, we assessed perceptions of caregivers of PWSDs regarding NGT feeding and the association between caregiver factors and NGT feedingMethodCommunity‐dwelling PWSDs with a FAST 6c score or higher, were recruited as part of the PISCES study, a prospective longitudinal cohort study. Their informal primary caregivers (family members in regular contact with the PWSDs and involved in main decision‐making process) were surveyed.Result215 caregivers of PWSDs enrolled in the study, of which 9.8% (n = 21) utilised NGT for their PWSD. Most (90.5%) caregivers of PWSDs receiving NGT reported that they understood the risks and benefits of NGT; most (85.8%) also agreed with the decision for NGT and reported that they believed it would allow the PWSD to live longer (85.7%). However, only 28.6% of caregivers wanted to be tube‐fed themselves if positions were reversed and 52.4% felt that tube feeding had reduced PWSDs’ quality of life. Comparing caregivers of PWSDs with and without NGT, there was no significant difference in their understanding of the natural course of dementia with only half of each group acknowledging that dementia can cause death (NGT 57.1% vs non‐NGT 56.1%, p = 0.969), nor difference in their knowledge of the PWSDs’ prognosis with majority indicating that they did not know how long the PWSD would live (NGT 85.7% vs non‐NGT 90.7%, p = 0.337). There was also no significant difference in their goals of care for the PWSDs with comfort reported as the primary goal for both groups (NGT 90.5% vs non‐NGT 92.3%, p = 0.773).ConclusionThere is a dissonance between caregivers’ self‐reported understanding and support of NGT use, and their preferences for NGT themselves, its perceived effect on PWSDs’ quality of life and goals of care. Further in‐depth qualitative exploration of the reasons underlying this discordance can provide more clarity on the issue.

Understanding the mix of services for mental health care in urban DR Congo: a qualitative descriptive study

BackgroundMental health workers (MHWs) are exposed to conflicts of competence daily when performing tasks related to the provision of mental health services. This may be linked to a lack of understanding of their tasks as caregivers and providers. Furthermore, in most low-income settings, it is unclear how the available services are organized and coordinated to provide mental health care. To understand the above, this study aimed to identify the current mix of services for mental health care in the urban Democratic Republic of the Congo (DRC).MethodsA qualitative descriptive study was carried out in Lubumbashi from February to April 2021. We conducted 7 focus group discussions (FGDs) with 74 key informants (family members, primary care physicians, etc.) and 13 in-depth interviews (IDIs) with key informants (traditional healers, psychiatrists, etc.). We performed a qualitative content analysis, guided by an analytical framework, that led to the development of a comprehensive inventory of MHWs from the household level to specialized facilities, exploring their tasks in care delivery, identifying existing services, and defining their current organization.ResultsAnalysis of transcripts from the FGDs and IDIs showed that traditional healers and family caregivers are the leading providers in Lubumbashi. The exploration of the tasks performed by MHWs revealed that lifestyle, traditional therapies, psychotherapy, and medication are the main types of care offered/advised to patients. Active informal caregivers do not currently provide care corresponding to their competencies. The rare mental health specialists available do not presently recognize the tasks of primary care providers and informal caregivers in care delivery, and their contribution is considered marginal. We identified five types of services: informal services, traditional therapy services, social services, primary care services, and psychiatric services. Analyses pointed out an inversion of the ideal mix of these services.ConclusionsOur findings show a suboptimal mix of services for mental health and point to a clear lack of collaboration between MHWs. There is an urgent need to clearly define the tasks of MHWs, build the capacity of nonspecialists, shift mental health-related tasks to them, and raise awareness about collaborative care approaches.

Predictors of Unmet Needs in Chilean Older People with Dependency: A Cross-Sectional Study.

Approximately one in five Chilean older adults has some degree of dependency. Limited evidence is available on self-perceived needs in Latin-American older people. The main aim of this study was to identify predictors of unmet needs of dependent older persons without cognitive impairment, considering personal and primary informal caregivers' factors. This cross-sectional study was conducted with a sample of 77 dyads of older people with dependency and their caregivers. A survey was administered, evaluating sociodemographic characteristics, anxious and depressive symptomatology, health-related quality of life, and social support. Older people's self-reported met and unmet needs and caregivers' burden and self-efficacy were also assessed. To determine predictors of unmet needs, a multiple regression analysis was carried out. Most participants had mild to moderate levels of dependency. The most frequent unmet needs were "daytime activities" (33.8%), "company" (23.4%), "benefits" (23.4%), and "psychological distress" (24.7%). Older people's higher level of dependency and anxious symptomatology were predictors of a higher number of unmet needs, with a model whose predictive value was 31%. The high prevalence of anxious symptomatology and its relationship with the presence of unmet needs highlight the importance of making older people's psychological and social needs visible and addressing them promptly.

A focus groups study of staff team experiences of providing interdisciplinary rehabilitation for people with dementia and their caregivers—a co-creative journey

BackgroundThe World Health Organization claims that rehabilitation is important to meet the needs of persons with dementia. Rehabilitation programmes, however, are not routinely available. Person-centred, multidimensional, and interdisciplinary rehabilitation can increase the opportunities for older adults with dementia and their informal primary caregivers to continue to live an active life and participate in society. To our knowledge, staff team experiences of such rehabilitation programmes, involving older adults with dementia and their informal caregivers has not been previously explored.MethodsThe aim of this qualitative focus group study was to explore the experiences of a comprehensive staff team providing person-centred multidimensional, interdisciplinary rehabilitation to community-dwelling older adults with dementia, including education and support for informal primary caregivers. The 13 staff team members comprised 10 professions who, during a 16-week intervention period, provided individualised interventions while involving the rehabilitation participants. After the rehabilitation period the staff team members were divided in two focus groups who met on three occasions each (in total six focus groups) and discussed their experiences. The Grounded Theory method was used for data collection and analysis.ResultsThe analysis resulted in four categories: Achieving involvement in rehabilitation is challenging, Considering various realities by acting as a link, Offering time and continuity create added value, and Creating a holistic view through knowledge exchange, and the core category: Refining a co-creative process towards making a difference. The core category resembles the collaboration that the staff had within their teams, which included participants with dementia and caregivers, and with the goal that the intervention should make a difference for the participants. This was conducted with flexibility in a collaborative and creative process.ConclusionsThe staff team perceived that by working in comprehensive teams they could provide individualised rehabilitation in creative collaboration with the participants through interaction, knowledge exchange, time and continuity, coordination and flexibility, and a holistic view. Challenges to overcome were the involvement of the person with dementia in goal setting and the mediating role of the staff team members. The staff pointed out that by refinement they could achieve well-functioning, competence-enhancing and timesaving teamwork.

Instability in Caregivers' Perception of Dementia as a Terminal Disease.

Family caregivers' perception that dementia is a terminal disease influence end-of-life (EoL) care of persons with severe dementia (PwSDs). Yet, this perception and the extent to which it changes over time is underexplored. We assessed PwSD caregivers' perception of dementia as a terminal disease and changes in this perception over time. Prospective cohort. Two hundred fifteen primary informal caregivers of community-dwelling PWSDs in Singapore were surveyed every 4 months over a period of 16months. We assessed the proportion of caregivers who perceived that dementia is a terminal disease and the extent to which it changed between the previous time points. Using mixed effects multinomial regression models, we assessed factors associated with caregivers' perception and changes in perception between consecutive time points. At baseline, only 26% of the caregivers reported correctly that dementia is a terminal disease. This changed over time, not necessarily toward a correct perception. Caregivers of PwSDs with an acute medical condition in the last 4months (risk ratio [RR] 2.19, 95% CI 1.21, 3.97) and those with higher functional dependence (RR 1.11, 95% CI 1.01,1.22) were more likely and those of older PwSDs were less likely (RR 0.87, 95% CI 0.81, 0.93) to perceive dementia as a terminal disease. Caregivers of PwSDs who had experienced an acute medical problem in the last 4months (RR 1.58, 95% CI 1.00, 2.49) were also more likely to shift their perception toward being correct. Caregivers of PwSDs who had more agitation behaviors were more likely to shift their perception toward being incorrect (RR 1.04, 95% CI 1.00,1.07) CONCLUSIONS AND IMPLICATIONS: Few caregivers perceived dementia as terminal, and this perception changed over time and differed according to age and the health status of PwSD. Results have implications regarding the frequency of prognostic discussions.

Caregiver contributions to general and specific self-care of patients affected by heart failure and other chronic conditions

Abstract Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Centre of Excellence for Nursing Scholarship (CECRI), Rome, Italy. Background Older adults with HF and other chronic conditions often need the support of informal caregivers in performing self-care. Caregiver contribution (CC) to patient’s self-care includes a series of recommendations (or acts to replace) made to the patient to keep their own health conditions stable and manage signs and symptoms of their chronic conditions. CC to general and specific patient self-care represents help that improves patient clinical outcomes and maintains the stability of chronic conditions. To date, no studies have investigated general and specific caregiver contributions to the self-care of patients with Heart Failure (HF) and other chronic conditions. Purpose Investigate caregiver contribution to general and specific self-care in patients affected by HF and other chronic conditions. Methods Cross-sectional study. Data collection was conducted in community and outpatient settings, from April 2017 to October 2021. Caregivers of patients affected by HF and other chronic condition were enrolled if they were &amp;gt;18 years old and identified by the patient as the primary informal caregiver. Caregiver Contribution to Self-Care of Chronic Illness Inventory (CC-SC-CII) and Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI), were used for measuring generic and specific CC to self-care, respectively. Values ≥70 indicate adequate CC to general and specific self-care behaviors. Paired t-test was carried out to test differences in CC-SC-CII and CC-SCHFI scores. Results This study enrolled 369 caregivers caring for HF patients and other chronic conditions. The sample was composed mainly of females (61.27%) with a mean age of 45.0 (±1.41) years, and that lived with their loved ones (55.28%). The two chronic conditions most frequently associated in patients with HF cared for by informal caregivers were hypertension (75%) and diabetes mellitus (70%). General CC to self-care maintenance, monitoring, and management were adequate with mean scores of 70.57 (±21.6), 81.47 (±21.85), and 72.98 (±20.61), respectively. Specific CC to self-care maintenance, monitoring, and management were inadequate with mean scores of 64.49 (±16.76), 54.08 (±26.71), and 65.24 (±17.25), respectively. CC-SC-CII scores were significantly (p&amp;lt;.0001) higher than CC-SCHFI scores. Conclusion Caregivers showed more difficulties in the contribution to specific HF self-care compared to general self-care behaviors. Knowing how caregivers contribute to self-care is important for clinicians to develop psychosocial interventions for improving CC to self-care in patients with HF and other chronic conditions.

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans. To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions. We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n=412 dyads). Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly. Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.

Effects of Early- and Late-Onset Alzheimer's Disease on Caregiver Burden

Introduction: Alzheimer’s disease (AD) is the most common cause of dementia. Early-onset AD (EOAD) occurs when it affects someone under the age of 65, and many people diagnosed are in their 40s and 50s. Many studies in the literature examine the caregiver burden of people with late-onset AH (LOAD), and it is unclear whether the experience of caregiving differs according to the age of onset of AH. Aim: This study aimed to determine whether there is a difference in the caregiver burden of primary informal caregivers of community-dwelling patients with AD according to the age of onset of the disease. Methods: A comparative descriptive study design was used in this study. The sample comprised 109 people with AD (34 EOAD and 75 LOAD) and their caregivers. Sociodemographic characteristic questionnaires, the Caregiver Burden Inventory, the Mini-Mental State Examination, the Neuropsychiatric Inventory, Barthel’s Activities of Daily Living, and the Clinical Dementia Rating Scale were used. Descriptive statistics, t-tests, and chi-square were used to describe and analyze the data. Results: Caregivers of patients with EOAD had significantly higher scores for social burden than caregivers of patients with LOAD (t=3.156, p=0.002). Furthermore, caregivers of patients with EOAD experienced more developmental, physical, and total burden than caregivers of patients with LOAD. However, these differences were not statistically significant (p&amp;gt;0.05). Conclusion: Considering that there will be differences in the caregiver burden of AH according to the age of onset, it is necessary to offer services tailored to the needs of AD caregivers.