Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

Background The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite. Methods We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations. Results Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05). Conclusions These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support.

Invisible Experts: A Systematic Review & Thematic Synthesis of Informal Carer Experiences of Inpatient Mental Health Care

Background: The negative impact of caregiving on carers’ physical and psychological wellbeing is well documented. Carers of mental health inpatients face additional burden, and report predominantly negative experiences of inpatient services. It remains unclear why, despite policies intended to improve inpatient experiences. A comprehensive review of carers’ inpatient experiences is needed to understand carer needs. As such, we aimed to conduct a systematic review and thematic synthesis of carer experiences of inpatient mental health care. Methods: We searched MEDLINE, PsycINFO, Embase and CINAHL for qualitative studies examining carer experiences of mental health inpatient care. Searches were supplemented by reference list screening and forward citation tracking of included studies. Results were synthesised using thematic synthesis. Our protocol was registered on PROSPERO (CRD42020197904) and our review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Findings: 12 studies were included from 6 countries. Four themes were identified: the emotional journey of inpatient care, invisible experts, carer concerns about quality of care for their loved one and relationships and partnershipInterpretation: Greater attention must be paid to ensure carers are well-supported, well-informed, and included in care. More emphasis must be placed on fostering positive relationships between carers, service users and staff and in facilitating continuity of care across inpatient and community services to provide carers with a sense of security and predictability. Further research is needed to explore differences in experiences based on carer and service user characteristics and global context, alongside co-production with carers to develop and evaluate future guidelines and policies.

The role of collaborative, multistakeholder partnerships in reshaping the health management of patients with noncommunicable diseases during and after the COVID-19 pandemic

Background Policies to combat the COVID-19 pandemic have disrupted the screening, diagnosis, treatment, and monitoring of noncommunicable (NCD) patients while affecting NCD prevention and risk factor control. Aims To discuss how the first wave of the COVID-19 pandemic affected the health management of NCD patients, identify which aspects should be carried forward into future NCD management, and propose collaborative efforts among public–private institutions to effectively shape NCD care models. Methods The NCD Partnership, a collaboration between Upjohn and the European Innovation Partnership on Active and Healthy Ageing, held a virtual Advisory Board in July 2020 with multiple stakeholders; healthcare professionals (HCPs), policymakers, researchers, patient and informal carer advocacy groups, patient empowerment organizations, and industry experts. Results The Advisory Board identified barriers to NCD care during the COVID-19 pandemic in four areas: lack of NCD management guidelines; disruption to integrated care and shift from hospital-based NCD care to more community and primary level care; infodemics and a lack of reliable health information for patients and HCPs on how to manage NCDs; lack of availability, training, standardization, and regulation of digital health tools. Conclusions Multistakeholder partnerships can promote swift changes to NCD prevention and patient care. Intra- and inter-communication between all stakeholders should be facilitated involving all players in the development of clinical guidelines and digital health tools, health and social care restructuring, and patient support in the short-, medium- and long-term future. A comprehensive response to NCDs should be delivered to improve patient outcomes by providing strategic, scientific, and economic support.

Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

Introduction Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: ‘Challenging road to and receipt of diagnosis’, ‘relationship change and loss’, ‘challenging experiences in caring’, ‘positive experiences and resilience’, ‘coping’ and ‘support needs’. Discussion Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact.

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Background Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

Prioritising key motivators and challenges influencing informal carers’ decisions for participating in randomised trials: An embedded Study Within A before and after Trial (SWAT 55)

Background: Family members, or others, often assume the role of informal (unpaid) carers of people with chronic illnesses. Care-giving, however, can impact profoundly on the quality of life of carers and can cause carer worry, stress and guilt. Implementing interventions that positively affect the lives of carers is important; however, carers as a group are often difficult to reach. We embedded a study within a pilot-feasibility trial of a mindfulness based intervention to determine and prioritise the key motivators and challenges influencing informal carers’ decisions for participating in a trial. Methods: We used a multi-method approach involving interviews with participants from a ‘host trial’ and data from systematic reviews to develop a survey that was distributed to informal carers in Ireland. The survey consisted of 28 motivator and 17 challenge statements. Participants rated how important they thought each statement was when deciding to take part in a trial on a 5-point Likert Scale. Mean scores and standard deviations were calculated for each statement and arranged in descending order to provide the priority lists. Results: Thirty-six carers responded to the survey. Helping to create awareness about carers was the top ranked motivator, followed by four study design statements related to the time at which the study occurs, the study location, format of delivery and venue. The least important motivator related to how carers were invited to take part in a study. Difficulties in planning due to the caring role emerged as the most important challenge, followed by being unable to leave the care recipient on his/her own. Conclusions: Insight into decision-making for research participation will assist trial developers tailor trial processes for informal carer populations. We recommend that trialists should consider these motivators and challenges when designing future trials involving informal carers so as to enhance trial feasibility and success.

Towards a middle-range theory of ‘Stability of home-based care arrangements for people living with dementia’ (SoCA-Dem): findings from a meta-study on mixed research

BackgroundMost people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability?MethodsWithin the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis.Results99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of change and balancing over time; (2) the characteristics of the care arrangement, including needs, the carer role, the dyadic relationship and resources; and (3) the context, which is determined by society and culture and the respective healthcare system. The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer.DiscussionThis middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice.OtherThis meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).

The ‘tipping point’: Exploring the factors associated with entry into residential care for people with dementia in Western Australia

Background People with dementia usually prefer to live in the community. Research is needed to identify the ‘tipping point’ for residential care entry and to highlight how people with dementia can be supported to remain at home as long as possible. Few previous studies have examined caregivers’ perceptions and explanations for the reasons people with dementia need to enter residential care in Australia. Aim To explore the factors contributing to people with dementia entering residential care in Perth, Western Australia, from the perspectives of informal carers and care staff. Method This phenomenological study used purposive sampling to recruit informal and formal caregivers of people with dementia. Semi-structured in-depth interviews were conducted with 13 family carers and 11 home care staff. Data were thematically analysed to identify individual, carer and contextual factors that impact on residential care entry. Findings The majority of participants identified a combination of factors as the ‘tipping point’ to residential care entry; a few also identified the cause as a sudden event or specific issue. Factors identified included deterioration related to worsening cognition, changed behaviours and a decline in the performance of activities of daily living; co-occurring health conditions; safety concerns; carer no longer able to meet care needs; impact of providing support becoming too much for the informal carer; lack of family or social support and needing assistance from services that were unavailable or inaccessible. Factors assisting people with dementia to remain living at home longer were family and social support, formal services and dog ownership. Conclusion This study identified individual, carer and contextual factors that contribute to people with dementia entering residential care in Australia. The ‘tipping point’ was recognised as when the needs of a person with dementia outweigh the capacity of their informal and formal carers, services and supports to care for them.

Multifaceted needs of individuals living with peripheral arterial disease: A qualitative study

Objectives To ascertain a comprehensive perspective of the impact of peripheral arterial disease (PAD) on people including needs for access to disease specific information, education, services, and support. Methods Participants were recruited from outpatient clinics at a tertiary hospital in metropolitan Australia. Telephone and face-to-face semi-structured interviews were conducted with nine individuals living with PAD and analysed using qualitative content thematic analysis. Results The nine participants were on average 74.2 (SD 10.9) years and predominantly women (67%). Lack of understanding of PAD and inconsistent information resulted in confusion regarding self-management strategies. Effects of pain and mobility problems were amplified for participants who lived alone and did not have an informal carer. Discussion Poor quality of life in PAD reflects pain, social isolation and fear of falls. Multidisciplinary teams with case managers should consider older people’s living situations and needs for additional support services and education to facilitate integrated care.

A mirror image: experiences of informal carers caring for frail, older persons at risk from falling

Falls can lead to social isolation, anxiety and depression for those who fall, although little is known about how informal carers manage those at risk from falling at home. This study aimed to explore the experiences of informal carers who care for frail, older people at risk from falling at home. A qualitative study using thematic analysis was conducted for this purpose. Data were collected via one-to-one, semi-structured interviews. Informal carers experienced social isolation, significant adjustments to their working lives, a fear of further falls, tiredness, anxiety and depression. These findings mirror previous observations, which have found that falling is a predictor of both physical and psychological changes, although in those who fall rather than those who care for them. This highlights the need for both health and social care services to identify the impact of care recipient falls on the informal carer.