Unraveling the subjective well-being of formal and informal caregivers for people with dementia: a comparative analysis

BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

<p>Relationships are formed between formal and informal caregivers as they cater for in-patients. These relationships are formed as they perform their caregiving activities. The various caregiving tasks of formal and informal caregivers tend to overlap, causing conflict in the relationships between formal and informal caregivers. Conflicts between caregivers negatively affect the health care of in-patients. There is therefore the need for caregivers (both formal and informal) to know what their various tasks are, which is a step toward a coordinated working relationship between them. Studies have found that caregiving roles, communication and role expectations and perceptions of formal and informal caregivers determine whether both parties can coordinate their various caregiving tasks. Limited research is also found on how formal and informal caregivers relate with one another in providing care for the elderly and those with specific ailments such as Alzheimer’s disease, dementia and delirium who might not be necessarily hospitalised. Previous studies have not treated the various tasks performed by formal and informal caregivers and the tasks that overlap between them which is the focus of this study. A sample size of 21 study participants, including eight in-patients, eight informal caregivers and five formal caregivers, was used. The study adopted the qualitative research approach using interviews and observation to gather data from formal and informal caregivers. It was found that specialised caregiving tasks were performed by formal caregivers while unspecialised caregiving tasks were performed by informal caregivers. Overlaps in the performance of specialised and unspecialised caregiving tasks were detected when some caregiving tasks that otherwise required unspecialised skills needed to be performed with specialised skills. Where a minimum level of skill was required, informal caregivers were taught a few skills to enable them to undertake those tasks. In order to improve the working relationship between formal and informal caregivers at the paediatric ward of the Cape Coast Teaching Hospital, it is recommended that these minor training by formal caregivers are intensified to improve the working relationship between formal and informal caregivers. Hospitals should also have clearly delineated roles for formal and informal caregivers to avoid overlapping caregiving tasks. This will ultimately enhance the quality of care provided to in-patients by improving communication between caregivers and reducing conflicts.</p><p> </p><p><strong> Article visualizations:</strong></p><p><img src="/-counters-/edu_01/0958/a.php" alt="Hit counter" /></p>

This paper reports a study to investigate the relationships between informal and formal care, changing relationships over time, impact of integrated care, and theoretical and methodological lessons that can be drawn from research on this topic. The ratio of informal to formal care provided in nursing homes varies. In many countries the predominance of traditional, formal care is being challenged by the emergence of integrated care models in which formal and informal caregivers co-operate and co-ordinate their activities to deliver tailor-made care. This move towards integrated care is likely to result in changes in the degree and nature of involvement of formal and informal caregivers in care activities. However, very little research has investigated this. Previous research is restricted to one point in time, as opposed to focussing on the changing relationships between formal and informal caregivers over time. The quasi-experimental design encompassed a traditional care comparison setting and an experimental setting with an integrated care intervention. At three measurement points, one before the intervention in May/June 2000 and two at 6 and 14 months after the intervention, informal and formal caregivers recorded their care activities. Informal care relationships were determined by calculating contribution rates and informal/formal care ratios for 14 activities. Integrated care did not bring about the expected major changes. There was a limited amount of substitution of formal care with informal care. There were limited changes in the extent of dual specialization, in which informal and formal caregivers perform separate activities. There was little supplementation of formal care with informal care. Furthermore, relationships changed over time, resulting in a complex pattern of linkages at the level of separate activities. Informal caregivers contribute to many activities. The impact of integrated care on the degree and nature of involvement, however, was moderate. A possible explanation is the contextual situation for nursing home care. These findings point to the need for further research into the (changing) relationship between formal and informal carers in residential care activities and the evolution of this relationship over time.

ABSTRACTIn ageing societies, policy makers aim for more contact between informal and formal care-givers as it may enhance the quality of care. So far, the linkage between formal and informal care-givers is generally studied from a one-sided or a single dyadic perspective, without taking into account that care networks of community-dwelling older adults often exist of multiple informal and formal care-givers. The current study examines discussion of care between all potential informal–formal care-giver dyads in a care network, and relates this to characteristics of the older care recipient, the care network and the care-givers. Seventy-four Dutch older care recipients provided information on all care-givers who helped with five different types of tasks; 410 care-givers reported on the contact between all care-givers identified. Multi-level logistic regression was conducted in 2,150 informal–formal care-giver dyads and revealed that in 26 per cent of all these dyads discussion on care occurred. This was more likely when both care-givers performed multiple types of tasks, the informal care-giver was residing with the care recipient, and contact within the formal and the informal sub-network was higher. To enhance discussion of care between informal and formal care-givers in care networks where no discussion occurs at all, home-care organisations may need to allocate formal care-givers who form a bridge with an extra-residential care-giver of care recipients living alone.

Collaboration between formal and informal caregivers is essential for providing good care to nursing home residents. Yet, ambiguity regarding mutual roles and responsibilities often impedes effective collaboration. To address this issue, we examined how formal caregivers, informal caregivers, and residents establish a moral understanding of their responsibilities, and how these understandings affect their triadic relationship. We conducted a responsive evaluation including 28 semistructured interviews with formal caregivers, informal caregivers, and residents. We used the Walker's (2007) expressive-collaborative model of morality as a theoretical lens to identify identities, values, and roles in the triad. Formal caregivers were assigned more moral responsibilities in the care process than residents and informal caregivers, particularly regarding decision-making authority. Formal caregivers considered this justified, while informal caregivers generally desired more influence. The attitude of residents on this matter remained relatively unclear. The diverging views on moral responsibilities between formal and informal caregivers led to relational tensions, affecting mutual trust and recognition between them. Walker's model of morality provides a deeper understanding of the moral dynamics underlying the collaboration between formal caregivers, informal caregivers, and residents. Traditional hierarchies and a mismatch between healthcare and family ethics are implied to hinder informal caregiver involvement. Our findings call for practical and cultural adaptations on different levels within and outside nursing home organizations to improve the triadic collaborative relationship.

Purpose: This study aimed to compare the spiritualwell-being levels of formal and informal caregiversof cancer patients.Materials and Methods: This study using a crosssectional survey was conducted with formal (n=52)and informal caregivers (n=52), who met theinclusion criteria, were included in the sample. Thedata of the study were collected using web-based andself-reported questionnaires.Results: The scores of spiritual well-being in alldimensions of formal and informal caregivers are ata moderate level. There was a difference between informal and formal caregivers in the belief andpeace sub-dimension scores. Moreover, there was nodifference in total score averages of the spiritualwell-being scale. It was found that there was nostatistically significant difference between themaccording to age groups, gender, marital status,having a child, and income status.Conclusions: This study provides that the careprocess of cancer patients may affect the spiritualwell-being of formal and informal caregivers.Keywords: cancer, formal caregivers, informalcaregivers, spiritual well-being, oncology nursing

Objectives We translated and modified an ambiance scale for use by (in)formal caregivers in Dutch nursing homes. We tested validity and reliability of the modified Ambiance Scale. Method Convenience sampling was used to enrol (in)formal caregivers in three nursing homes in the Netherlands. 104 questionnaires were filled in; 45 by informal caregivers, 46 by formal caregivers. Ten caregivers filled in the questionnaire twice for test-retest purposes. Three original items were used, and seven newly were added to form the modified Ambiance Scale. Each item consisted of an adjective pair assessing an aspect of ambiance on a scale of 1 (homelike) to 5 (institutional). Caregivers filled in the questionnaire on two different days to assess intra rater reliability. Differences in scoring between formal and informal caregivers and between original and new items were analyzed. Results The questionnaire was easy to comprehend and fill in. Internal consistency was good (a = 0.93). Validity was found to be good. Factor analysis demonstrated that eight items identified as one factor. No differences in scoring between the first and second assessment were found (p<.001). Formal caregivers scored ambiance more chaotic than informal caregivers did (p<.01). No differences in scoring between original and new items were found (p =.06). Conclusion This study demonstrated that the modified Ambiance Scale had good internal consistency, moderate replicability and both informal and formal caregivers’ overall ratings were comparable. The modified Ambiance Scale is a valid, reliable and easy to use tool to assess ambiance in nursing home settings.

Caring for older adults is a dynamic and complex process, and analyzing personal and environmental factors separately fails to capture its full nature. The person-environment fit theory offers a valuable framework to explore interactions between caregivers and their environments. This review aimed to synthesize evidence on the person-environment fit of formal and informal caregivers for older adults, identify gaps in existing literature, and propose future research directions. The scoping review was conducted following the six-step guidance of the Joanna Briggs Institute 2020. A literature search was conducted in June 2024 across seven databases: Scopus, ProQuest, Web of Science, Embase, PubMed, MEDLINE, and CINAHL. Empirical studies published after 2000 regarding the person-environment fit of caregivers for older adults were included. A total of 15 eligible articles were included, with nine focusing on formal caregivers and six focusing on informal caregivers. Research on formal caregivers' person-environment fit often came from human resource management perspectives and was supported by various theories. In contrast, studies on informal caregivers tended to draw from environmental gerontology theories and lacked a systematic analytical model. Most studies used self-designed questionnaires or interviews, with one employing a standard person-environment fit measurement scale. Caregivers' person-environment fit was analyzed through "demands-abilities fit" and "needs-supplies fit" dimensions, covering various types like person-physical, person-interpersonal, value, goal, and caregiving-life fit. Findings indicated that a high level of person-environment fit was associated with better physical and mental well-being, stronger caregiving commitment, and improved care quality. The holistic and dynamic nature of person-environment fit theory is closely aligned with the caregiving process, enhancing our understanding of the experiences of caregivers. Based on existing evidence, this review proposes a theoretical framework for analyzing informal caregivers' person-environment fit. Further investigation into the theoretical framework of caregiver person-environment fit, along with the development of standardized assessment instruments, will significantly advance the well-being of both caregivers and care recipients. Open Science Framework https://doi.org/10.17605/OSF.IO/YV26C .

BackgroundCaring for a person with Alzheimer’s disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver’s burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers.MethodsThis cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalized Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups.ResultsThere were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ.ConclusionsPersonal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers’ mental health in order to provide them with necessary care and create appropriate support groups.

Background: Informal caregivers of individuals with mild cognitive impairment (MCI) experience high levels of psychological and physical stress, with limited access to supportive interventions and time constraints. Virtual Reality (VR) technologies may provide brief and accessible opportunities to support caregiver well-being, particularly during waiting periods in clinical settings. This pilot study aimed to explore the potential of a semi-immersive VR intervention to enhance psychological well-being in informal caregivers. Methods: This non-randomized pilot study investigated the effects of a semi-immersive VR-based physical training program (K-HERO®) on psychological well-being and coping strategies in informal caregivers. Participants were recruited from January to May 2025 at the IRCCS Centro Neurolesi “Bonino-Pulejo” (Messina, Italy), and the intervention was delivered individually in a dedicated room within the rehabilitation facility, while caregivers accompanied their relatives to treatment sessions. Ten caregivers completed six sessions (30–40 min each). The study was conducted in accordance with TREND reporting guidelines. Pre- and post-intervention assessments included the State-Trait Anxiety Inventory (STAI), Perceived Stress Scale (PSS), COPE Inventory, Caregiver Burden Inventory (CBI), and International Physical Activity Questionnaire (IPAQ). Visual Analog Scales and instrumental data from the VR system were used to monitor physical performance and user experience. Non-parametric statistics were applied. Results: Significant reductions were observed in avoidance (p = 0.033) and social support-based (p = 0.023) coping strategies. Differences emerged based on caregiver-patient relationships: parental caregivers showed increased anxiety, while offspring caregivers showed improvements. The intervention was well tolerated, with high usability and no adverse events reported. Conclusions: A short, structured, VR-based intervention delivered during clinical waiting periods may effectively reduce maladaptive coping strategies and support emotional well-being in informal caregivers. These findings highlight the potential of brief digital interventions in real-world care contexts. Larger randomized studies are needed to validate these preliminary findings and personalize interventions to different caregiver profiles.

Relapse in People Living with Schizophrenia (PLS) has several reasons and recognizing these can increase the effectiveness of treatment interventions. Formal and informal caregivers are an informed source to reduce relapse in PLS. This study explores the caregivers' perspective in Iran on the factors affecting relapse in PLS. A total of 28 caregivers (16 formal caregivers and 12 informal caregivers) of PLS were enrolled in our qualitative study. A content analysis was conducted using individual and group, semi-structured in-depth interviews with informal and formal caregivers of PLS. This study was conducted in a hospital, three universities, and a non-governmental organization in Tehran, Iran. The majority (69%) of the participants were females. About half of the informal caregivers were over 60 years old and about 40% of the formal caregivers were in the age range of 30 to 40 years. The average number of years of work for informal caregivers was 17.6 years and the average of work experience among the formal caregivers was 14.1 years. Seven key dual themes were identified from data: 'awareness-stigma', 'social support-social exclusion', 'treatment adherence-treatment discontinuation', 'holistic approach - one-dimensional approach', 'supported employment-social dysfunction', 'emotional management in family - family with high emotional expression', and 'access to treatment-treatment gap'. The results of this research can help practitioners and policymakers to enable evidence-based practices to reduce relapse in PLS by emphasizing and acting on factors identified in our analyses.

This study examined differences in care burden between formal and informal caregivers of dependent older adults according to care-related characteristics, and whether care time had a moderating effect on the relationship between care-related characteristics and caregiver burden. Participants were formal (n = 520) and informal caregivers (n = 142) of dependent older adults in South Korea. Caregiver burden was measured using the Korean version of the Zarit Burden Interview. Data were analyzed using hierarchical regression with interaction terms and moderation analysis. Caregiver burden was higher for informal caregivers than formal caregivers. Factors associated with an increased risk of caregiver burden in both formal and informal caregiver of dependent older adults were caregivers' stress, physical strain, and care time. Care time significantly moderated the relationship between care attitude and care burden only among formal caregivers. When formal caregivers' care time was 1 standard deviation higher than the mean value, care attitude was significantly associated with care burden (bsimple = -0.903, SE = 0.106, p < 0.001). The caregiver burden of dependent older adults can be reduced by providing interventions to attenuate the effects of modifiable risk factors that were identified in this study. And to weaken the relationship between care attitude and burden of formal caregivers who have long care hours, a positive social atmosphere for care should be provided in addition to education. To realize sustainable care, policy considerations that reflect the results of this study will help solve the problem of formal and informal caregiver burden of dependent older adults.

BackgroundAdolescent Girls with Developmental Disabilities (AGDD) face unique challenges in menstruation management, requiring care and support from both informal and formal caregivers. Limited research has explored the experiences of these caregivers in managing AGDD’s menstrual health, particularly in this study setting.ObjectiveThis study seeks to explore the experiences and perspectives of the informal and formal caregivers on the menstruation management of adolescent girls with developmental disabilities in selected special schools in Karveer Taluka, Maharashtra.MethodsA qualitative study was conducted among informal caregivers (family members) and formal caregivers (special school staff) of those AGDD, who were aged 10–19 years, had attained menarche, and were attending three selected special schools of Karveer Taluka, Maharashtra, India. In-depth interviews (IDI), in the local language, Marathi, using an IDI guide developed based on a conceptual framework, were conducted among 14 informal and 13 formal caregivers. Interviews were audio-recorded with consent and transcribed verbatim. A thematic analysis using deductive and inductive approaches was carried out using MAXQDA software. Some codes and themes were deductively generated from the interview guide/conceptual framework, and others were generated inductively from the data. The transcripts were coded line by line and later grouped under relevant categories. Categories were grouped into subthemes, and broader themes were derived from the subthemes. The themes were interpreted and analyzed, and appropriate conclusions were drawn.ResultsFour deductive and one inductive theme were generated: The deductive themes are challenges faced by informal caregivers in managing menstruation of AGDD, patterns of menstrual acceptance and behavioural changes among AGDD, long-term concerns of the informal caregivers and perspectives on menstrual management, and recommendations given by the informal and formal caregivers for supporting AGDD. The inductive theme generated is the role of formal caregivers in training AGDD in menstruation management.ConclusionThe study underscores the critical role of informal and formal caregivers and their challenges in managing AGDD’s menstrual health, highlighting the need for targeted training and support programs.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12905-025-04029-y.

<h3>Introduction</h3> Even though informal carers play a crucial role in the daily management of patients with ESKD receiving haemodialysis they have consistently received little attention in both research and practice. It is necessary to identify their needs and knowledge requirements, so that educative and supportive programs can be developed to assist them in their caring role. <h3>Aims</h3> To ascertain informal caregivers' knowledge regarding the care they provide. Explore how knowledge has impacted on informal caregivers' ability when providing care to patients with ESKD receiving haemodialysis. Identify the needs of informal caregivers of patients with ESKD receiving haemodialysis. <h3>Method</h3> A systematic search using the search terms and index terms related to informal carers was conducted. Two methods were used to search for appropriate literature: database searching and citation searching. Databases searched included: Web of Science, PsycINFO, Embase, Medline and CINAHL from February 2010 until February 2020. <h3>Results</h3> Several themes and associated sub-themes were identified: Theme 1 Provision of information to assist informal caregivers in providing care. Related Sub-Themes Informal caregivers' access to and provision of sources of knowledge relating to managing patient symptoms. Skills provision for informal carers of patients through educational strategies. The importance of self–care in a caregiving role. Theme 2 Factors associated with psychological wellbeing in informal caregivers of people on haemodialysis. Related Sub-Themes Potential causes of stress when providing informal care. Spiritual and religious considerations used to cope with psychological consequences of caring. Theme 3 Caregiver burden as described by informal caregivers of patients undergoing haemodialysis treatment. Related Sub-Themes Relationship between caregiving duties and degree of caregiver burden. Relationship between caregiver burden and quality of life. Effect of informal caregiving on marital relationships. <h3>Conclusion</h3> A deeper insight is required into the experiences of informal carers to identify what would assist and benefit them in their caregiving role. Although most research studies in this review highlight the difficulties and challenges faced by informal caregivers such as lack of knowledge and skills and lack of information provided by healthcare professionals, there is scant information offered as to what support mechanisms would be most beneficial to caregivers to address their needs. <h3>Impact</h3> This systematic review has highlighted several gaps in the current research around the knowledge and informational needs and skills required by informal carers, thus necessitating the development of a supportive intervention to support them in their caring role.

To map evidence of the existing virtual reality-based dementia educational programmes and the effects of these educational programmes on dementia formal and informal caregivers. A scoping review. A comprehensive search of nine databases was conducted to find studies from the inception of the databases to October 2023. Two authors independently screened the titles and abstracts related to the eligibility criteria. Full texts of potentially relevant studies were read by one author and checked by a second. Data extraction and synthesis using NVivo 12 were undertaken by one author and checked by two other authors. Nineteen studies published between 2002 and 2022. The four randomised controlled studies and five qualitative studies were of moderate to good methodological quality. The 10 quasi-experimental studies were of weak to moderate quality. Fifteen virtual reality-based educational programmes had a positive influence on formal and informal caregivers, including improving caregivers' perceptions changing attitudes towards people with dementia, while the nursing competence of formal caregivers did not improve in short term. Educational programmes that covered dementia-related information and care strategies better improved the knowledge level of dementia formal and informal caregivers. The qualitative and quantitative studies of moderate to good quality included in this study support the idea that virtual reality-based dementia educational programmes may be a safe and effective way and have potential benefits for improving knowledge, perceptions, attitudes and nursing competence. This scoping review will provide an emerging teaching model for formal and informal caregivers of people with dementia and help them better understand the types and the influence of virtual reality-based dementia educational programmes. PRISMA-ScR. Not required as this review in accordance with the aim to map existing literature from the dementia formal and informal caregivers' perspective.