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333 A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care

Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom.

Wed, 12/18/2019 - 13:08

The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment

Background: Interventions in health care often not only have an effect on patients, but also on their informal caregivers. Caregiving can have a profound impact on the health and wellbeing of carers. Ignoring these spillovers in economic evaluations risks labelling interventions mistakenly as cost-effective, at the expense of informal caregivers.

Tue, 06/18/2019 - 16:18

A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial

Background: Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress.

Thu, 01/31/2019 - 10:40

Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity

Background: Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving.

Tue, 01/22/2019 - 11:40

Testing the effectivity of the mixed virtual reality training Into D'mentia for informal caregivers of people with dementia: protocol for a longitudinal, quasi-experimental study

Introduction: Informal caregivers for people with dementia (hereafter: caregivers) often feel (over)burdened by the care for a loved one with dementia, and this can have various deleterious effects on both caregivers and patients. Support for caregivers is urgently needed, and for this reason, a dementia simulator (Into D'mentia) was developed in which caregivers experience what it is like to have dementia. The simulator attempts to heighten caregivers' empathy and understanding for the patient and, in turn, diminish their own caregiver burden.

Wed, 01/02/2019 - 15:51

Informal care, employment and quality of life: Barriers and facilitators to combining informal care and work participation for healthcare professionals

Background: In The Netherlands, one out of six Dutch employees has informal care tasks; in the hospital and healthcare sector, this ratio is one out of four workers. Informal carers experience problems with the combination of work and informal care. In particular, they have problems with the burden of responsibility, a lack of independence and their health.

Wed, 01/02/2019 - 12:59

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

Objective: To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.; Design: A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year.

Wed, 01/02/2019 - 12:22

Shared decision-making in dementia care planning: barriers and facilitators in two European countries

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands.

Wed, 10/31/2018 - 14:17

Who is responsible for providing care? Investigating the role of care tasks and past experiences in a cross-sectional survey in the Netherlands

Background: Many countries face substitution from formal to informal care. It is essential that a sufficient number of caregivers, such as family, friends or neighbors, are willing and able to lend care to address the needs of ill or elderly persons.

Fri, 10/19/2018 - 15:55

Contracting one's family members: the Dutch care allowance

This chapter focuses on systems of payment for social care in the Netherlands where an elaborate system was developed in the 1990s of 'personal budgets', supplied directly to care users and heavily regulated, which enabled them to pay relatives, friends and neighbours for appropriate help. Despite the efficiency and popularity of the PGB (Dutch Care Allowance or personal budget) the Dutch government is committed to reducing the scope and costs of the scheme. The chapter reviews the PGB in 2004, the impact of the subsequent changes and the PGB's uncertain future.

Thu, 07/20/2017 - 15:24

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