scholarly journals 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

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Wilfried GUETS ◽  
Lionel PERRIER
Keyword(s):  
Psychological Intervention ◽  
Population Aging ◽  
Probit Model ◽  
Care Recipient ◽  
Sensitivity Analyses ◽  
Informal Carer ◽  
Negative Consequences ◽  
Term Care ◽  
Training Support ◽  
Informal Carers

Abstract 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.

scholarly journals Informal carer in Portugal: moving towards political recognition in Portugal

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
I Fronteira ◽  
J Simoes ◽  
G Augusto
Keyword(s):  
Informal Care ◽  
Long Term Care ◽  
Well Being ◽  
Oecd Countries ◽  
Low Fertility ◽  
Informal Carer ◽  
Term Care ◽  
System Perspective ◽  
Informal Carers

Abstract Informal care represents around 80% of all long term care provided in EU countries. Nevertheless, the needs for this type of care are expected to increase in the coming years in all OECD countries. Portugal is among the OECD countries with the highest ageing index (21.5% of the population was older than 65 years in 2017) due to high life expectancy and low fertility rates. As this demographic trend establishes, Portugal is expected to have more than 40% of the population over 65 years in 2037, and the expected prevalence of dementia is 3%, in 2050. In 2015 there were 2.1% of people over 65 receiving long-term care, representing 52% of all long-term care users. Around 38% were receiving care at home. It is estimated that 287,000 people in Portugal depend on informal carers. The agenda towards the official recognition of informal cares has been push forward in the country. Since 2015, several recommendations have been issued by the Parliament as well as legislative initiatives and a proposal for a Status of the Informal Carer is currently under discussion. We analyse the process of formulation of this policy in terms of sectors and stakeholders involved, definition and scope of informal carer, rights and obligations, role of the person being cared for, formal protection (e.g., labor, social, financial, training) and implementation. Recognition of the informal carer is a sector wide approach. One of the main features is the economic, social and labor protection mainly through reconciliation between work life and caring activities and promotion of the carer’s well being. Notwithstanding, and from a health system perspective, community health teams are to be the focal point for informal carers, supporting and providing specific training whenever needed. Despite its relevance, informal care should not be professionalized and responsibility of care should not be shifted from health services to informal carers. Key messages Needs for informal care are expected to increase in the coming years in OECD countries. Recognition of the informal carer is a sector wide approach.

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

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Marcus F. Johansson ◽  
Kevin J. McKee ◽  
Lena Dahlberg ◽  
Christine L. Williams ◽  
Martina Summer Meranius ◽  
...  
Keyword(s):  
Social Life ◽  
Descriptive Analysis ◽  
Psychosocial Impact ◽  
Care Recipient ◽  
Informal Carer ◽  
Policy And Practice ◽  
Swedish Population ◽  
Cross Sectional ◽  
People With Dementia ◽  
Informal Carers

Abstract 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.

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

2021 ◽  
Vol 26 (2) ◽  
pp. 64-68
Author(s):  
Carolyn Lees ◽  
Thomas O'Brien ◽  
Constantinos Maganaris
Keyword(s):  
At Risk ◽  
Social Isolation ◽  
Mirror Image ◽  
Care Recipient ◽  
Anxiety And Depression ◽  
Informal Carer ◽  
Health And Social Care ◽  
Informal Carers ◽  
The Impact ◽  
At Home

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.

scholarly journals 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)

2020 ◽  
Vol 3 ◽  
pp. 71
Author(s):  
Valerie Smith ◽  
Margarita Corry ◽  
Declan Devane ◽  
Shaun Treweek ◽  
Andrew Hunter ◽  
...  
Keyword(s):  
Research Participation ◽  
Chronic Illnesses ◽  
Care Recipient ◽  
Feasibility Trial ◽  
Informal Carer ◽  
Care Giving ◽  
Before And After ◽  
Important Challenge ◽  
Multi Method Approach ◽  
Informal Carers

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.

scholarly journals 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)

2021 ◽  
Vol 3 ◽  
pp. 71
Author(s):  
Valerie Smith ◽  
Margarita Corry ◽  
Declan Devane ◽  
Shaun Treweek ◽  
Andrew Hunter ◽  
...  
Keyword(s):  
Research Participation ◽  
Chronic Illnesses ◽  
Care Recipient ◽  
Feasibility Trial ◽  
Informal Carer ◽  
Care Giving ◽  
Before And After ◽  
Important Challenge ◽  
Multi Method Approach ◽  
Informal Carers

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.

Integrated Outpatient Care in Advanced Heart Failure: the Beehive Person-Centered Model

2014 ◽  
Vol 4 (1) ◽  
pp. 23-30
Author(s):  
Kira Stellato ◽  
Franco Humar ◽  
Cristina Montesi ◽  
Donatella Radini ◽  
Raffaella Antonione ◽  
...  
Keyword(s):  
Heart Failure ◽  
Outpatient Care ◽  
Environmental Changes ◽  
Advanced Heart Failure ◽  
Care Recipient ◽  
World Health ◽  
Care Process ◽  
Term Care ◽  
Informal Carers

Rationale: Cardiovascular disease (CVD) is one of the leading causes of chronic care needs. According to the World Health Organization, by 2030 the number of people dying from CVD is expected to reach 23.3 million. Heart failure is a chronic, progressive, incurable condition which poses a substantial physical, psychological, spiritual and social burden on patients, families as well as formal and informal carers. The complex needs of these patients require the planning and implementation of a new, revisited approach to disease management. Methods: In Trieste, Italy, the long-standing integrated outpatient approach to care has been recently integrated by a dedicated Advanced Heart Failure Clinic (AHFC) for the identification of holistic needs and the provision of multidisciplinary, multidimensional supportive and palliative care to patients with advanced HF and their families. Emphasis is being laid not only on the diseased care recipient but on the ‘person’ who attends and is being attended to, who empowers and is being empowered by through an integrated process of care.Results: The integration of outpatient care services is challenging for all the stakeholders involved. A multidisciplinary, multidimensional, person-centered integrated model of care (the beehive person-centered model) might improve heart failure awareness and knowledge and would help structure better territorial outpatient pathways for patients and families, while enhancing formal and informal carers’ individual roles and general wellbeing.Discussion: The need for interconnectedness in the Beehive Person-Centered Model requires for all stakeholders to view each other as symmetrical allies, which may be utopist at best. Flexibility to adapt to individual, organizational and environmental changes may pose challenges to the long-term sustainability of integrated pathways and bring about conforming behaviors rather than proactive ones, which may jeopardize individual accountability. However, an empowered team may provide short and long term benefits to its members such as clarity of vision, greater self-awareness, self-monitoring and adapatability to changes. Conclusions: A Beehive Person-Centered Model of integrated, multidisciplinary and multidimensional evidence and values-based care may prove useful to reconcile clinical, emotional, spiritual and social needs of all stakeholders involved in the cure/care process and ensure sustainable, efficient and effective long-term care.  Further qualitative/quantitative research is needed to confirm its efficacy and effectiveness and cultural transferability. 

scholarly journals Cost-effectiveness of zoledronic acid compared with sequential denosumab/alendronate for older osteoporotic women in Japan

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Takahiro Mori ◽  
Carolyn J. Crandall ◽  
Tomoko Fujii ◽  
David A. Ganz
Keyword(s):  
Health Economic ◽  
Cost Effectiveness ◽  
Zoledronic Acid ◽  
Cost Saving ◽  
Fragility Fracture ◽  
Community Dwelling ◽  
Sensitivity Analyses ◽  
Term Care ◽  
Lifetime Horizon ◽  
The Cost

Abstract Summary Among hypothetical cohorts of older osteoporotic women without prior fragility fracture in Japan, we evaluated the cost-effectiveness of two treatment strategies using a simulation model. Annual intravenous zoledronic acid for 3 years was cost-saving compared with biannual subcutaneous denosumab for 3 years followed by weekly oral alendronate for 3 years. Purpose Osteoporosis constitutes a major medical and health economic burden to society worldwide. Injectable treatments for osteoporosis require less frequent administration than oral treatments and therefore have higher persistence and adherence with treatment, which could explain better efficacy for fracture prevention. Although annual intravenous zoledronic acid and biannual subcutaneous denosumab are available, it remains unclear which treatment strategy represents a better value from a health economic perspective. Accordingly, we examined the cost-effectiveness of zoledronic acid for 3 years compared with sequential denosumab/alendronate (i.e., denosumab for 3 years followed by oral weekly alendronate for 3 years, making the total treatment duration 6 years) among hypothetical cohorts of community-dwelling osteoporotic women without prior fragility fracture in Japan at ages 65, 70, 75, or 80 years. Methods Using a previously validated and updated Markov microsimulation model, we obtained incremental cost-effectiveness ratios (Japanese yen [¥] (or US dollars [$]) per quality-adjusted life-year [QALY]) from the public healthcare and long-term care payer’s perspective over a lifetime horizon with a willingness-to-pay of ¥5 million (or $47,500) per QALY. Results In the base case, zoledronic acid was cost-saving (i.e., more effective and less expensive) compared with sequential denosumab/alendronate. In deterministic sensitivity analyses, results were sensitive to changes in the efficacy of zoledronic acid or the cumulative persistence rate with zoledronic acid or denosumab. In probabilistic sensitivity analyses, the probabilities of zoledronic acid being cost-effective were 98–100%. Conclusions Among older osteoporotic women without prior fragility fracture in Japan, zoledronic acid was cost-saving compared with sequential denosumab/alendronate.

scholarly journals It Is Not Just Mortality: A Call From Chile for Comprehensive COVID-19 Policy Responses Among Older People

2020 ◽  
Author(s):  
Pablo Villalobos Dintrans ◽  
Jorge Browne ◽  
Ignacio Madero-Cabib
Keyword(s):  
Older People ◽  
National Level ◽  
Health Issues ◽  
Negative Consequences ◽  
Access To Health Services ◽  
Term Care ◽  
Policy Responses ◽  
Level Data ◽  
Definition Of

Abstract Objective Provide a synthesis of the COVID-19 policies targeting older people in Chile, stressing their short- and long-term challenges. Method Critical analysis of the current legal and policy measures, based on national-level data and international experiences. Results Although several policies have been enacted to protect older people from COVID-19, these measures could have important unintended negative consequences in this group’s mental and physical health, as well as financial aspects. Discussion A wider perspective is needed to include a broader definition of health—considering financial scarcity, access to health services, mental health issues, and long-term care—in the policy responses to COVID-19 targeted to older people in Chile.

scholarly journals Adapting Resources for Enhancing Alzheimer's Caregiver Health for Dementia-Capable Services

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 55-55
Author(s):  
Mindi Spencer ◽  
Maggi Miller ◽  
Diana Jahries ◽  
James Davis ◽  
S Melinda Spencer
Keyword(s):  
Problem Behaviors ◽  
Caregiver Burden ◽  
Care Recipient ◽  
Caregiver Training ◽  
Training Support ◽  
Caregiver Health ◽  
Dementia Patients ◽  
Post Test ◽  
And Coping ◽  
Training And Support

Abstract The overall goal of the PRISMA Health - REACH (PH-REACH) project was to reduce caregiver burden and improve caregiving skills among caregivers of community-living Alzheimer's disease and related dementia patients and, as a result, improve care and quality of life for both the patients and their caregivers. This evidence-based, person-centered program emphasizes positive aspects of caregiving and provides tools to improve stress management, caregiver self-care, and coping skills for managing problem behaviors. PH-REACH provided in-home caregiver training, support, and service referral to 126 caregivers in the Greenville area. Trained coaches delivered the program to caregivers of persons with moderate to severe dementia in its original format but later adapted it to better fit the caregivers’ needs. Analysis of pre- and post-test data showed that both the standard and adapted interventions provided benefits across multiple caregiver outcomes, including reduced caregiver burden, ability to manage disruptive behaviors of the care recipient, increased caregiver self-efficacy, reduced depression, and a slight improvement in the number of chronic health conditions. This supports and expands on previous research that has demonstrated the ability of this program to translate across different community-based and clinical settings. The tailored version of PH-REACH succeeded in assisting these caregivers, meeting them where they were in their caregiving journey, and provided measurable benefits to both their mental and physical health. Overall, this project provided evidence of the utility of the PH-REACH intervention and laid the groundwork to extend caregiver training and support to other institutions, both inside and outside the health system.

scholarly journals #MoreThanAVisitor: Families as “Essential” Care Partners During COVID-19

2020 ◽  
Author(s):  
Candace L Kemp
Keyword(s):  
Family Involvement ◽  
Long Term Care ◽  
Research Policy ◽  
Well Being ◽  
Direct Care ◽  
Negative Consequences ◽  
Public Health Response ◽  
Term Care ◽  
Care Partners

Abstract The public health response to the current Coronavirus pandemic in long-term care communities, including assisted living, encompasses prohibiting visitors. This ban, which includes family members, has been criticized for being unfair, unhealthy, and unsafe. Against this backdrop, I examine the roles family play in residents’ daily lives and care routines. I argue that classifying family as “visitors” rather than essential care partners overlooks their critical contributions and stems from taken-for-granted assumption about gender, families, and care work, and I demonstrate why families are more than visitors. Policies that ban family visits also reflect a narrow understanding of health that focuses on mitigating infection risk, but neglects overall health and well-being. This policy further stems from a limited comprehension of care relations. Research shows that banning family visits has negative consequences for residents, but also families themselves, and direct care workers. I argue that identifying ways to better understand and support family involvement is essential and demonstrate the utility of the Convoys of Care model for guiding the reconceptualization of family in long-term care research, policy, and practice during and beyond the pandemic.

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