Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: A cross-sectional study

Background: Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations. Methods: A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses. Results: Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC. Conclusions: Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time

Using the Treatment Passport to stimulate Advance Care Planning

Care recipients are becoming increasingly involved in the decision-making process for suitable treatments. Advance Care Planning (ACP) enables care recipients and healthcare professionals to timely think and discuss wishes and preferences for treatments, before a care recipient becomes limited by disease, cognitive problems or age. The Treatment Passport is developed by geriatric specialist Esther Bertholet and contains supportive questions to think about treatment wishes. This study aimed to evaluate the experiences of civilians and healthcare professionals with the usage of the Treatment Passport during ACP. Involved care organisations distributed the Treatment Passports to healthcare professionals, for example dementia casemanagers. Healthcare professionals then handed the Treatment passports to civilians, for example older persons. Thereafter, healthcare professionals (N=30) and civilians (N=80) filled out a questionnaire about the experiences with usage of the Treatment Passport. 65% of the civilians had a disease and a mean age 75.3 years. The Treatment Passport was considered a helpful tool to think and talk about treatment wishes. 57% of the healthcare professionals wants to keep using the Treatment Passport and 78% of the civilians would recommend it to others. Participants who found the passport of limited added value mostly had their own methods of discussing their treatment wishes

Het gebruik van het Behandelpaspoort voor het stimuleren van Proactieve Zorgplanning

Care recipients are becoming increasingly involved in the decision-making process for suitable treatments. Advance Care Planning (ACP) enables care recipients and healthcare professionals to timely think and discuss wishes and preferences for treatments, before a care recipient becomes limited by disease, cognitive problems or age. The Treatment Passport is developed by geriatric specialist Esther Bertholet and contains supportive questions to think about treatment wishes. This study aimed to evaluate the experiences of civilians and healthcare professionals with the usage of the Treatment Passport during ACP. Involved care organisations distributed the Treatment Passports to healthcare professionals, for example dementia casemanagers. Healthcare professionals then handed the Treatment passports to civilians, for example older persons. Thereafter, healthcare professionals (N=30) and civilians (N=80) filled out a questionnaire about the experiences with usage of the Treatment Passport. 65% of the civilians had a disease and a mean age 75.3 years. The Treatment Passport was considered a helpful tool to think and talk about treatment wishes. 57% of the healthcare professionals wants to keep using the Treatment Passport and 78% of the civilians would recommend it to others. Participants who found the passport of limited added value mostly had their own methods of discussing their treatment wishes

Effects, costs and feasibility of the ‘Stay Active at Home’ Reablement training programme for home care professionals: study protocol of a cluster randomised controlled trial

Abstract Background According to the principles of Reablement, home care services are meant to be goal-oriented, holistic and person-centred taking into account the capabilities and opportunities of older adults. However, home care services traditionally focus on doing things for older adults rather than with them. To implement Reablement in practice, the ‘Stay Active at Home’ programme was developed. It is assumed that the programme leads to a reduction in sedentary behaviour in older adults and consequently more cost-effective outcomes in terms of their health and wellbeing. However, this has yet to be proven. Methods/ design A two-group cluster randomised controlled trial with 12 months follow-up will be conducted. Ten nursing teams will be selected, pre-stratified on working area and randomised into an intervention group (‘Stay Active at Home’) or control group (no training). All nurses of the participating teams are eligible to participate in the study. Older adults and, if applicable, their domestic support workers (DSWs) will be allocated to the intervention or control group as well, based on the allocation of the nursing team. Older adults are eligible to participate, if they: 1) receive homecare services by the selected teams; and 2) are 65 years or older. Older adults will be excluded if they: 1) are terminally ill or bedbound; 2) have serious cognitive or psychological problems; or 3) are unable to communicate in Dutch. DSWs are eligible to participate if they provide services to clients who fulfil the eligibility criteria for older adults. The study consists of an effect evaluation (primary outcome: sedentary behaviour in older adults), an economic evaluation and a process evaluation. Data for the effect and economic evaluation will be collected at baseline and 6 and/or 12 months after baseline using performance-based and self-reported measures. In addition, data from client records will be extracted. A mixed-methods design will be applied for the process evaluation, collecting data of older adults and professionals throughout the study period. Discussion This study will result in evidence about the effectiveness, cost-effectiveness and feasibility of the ‘Stay Active at Home’ programme. Trial registration ClinicalTrials.gov: NCT03293303, registered on 20 September 2017

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study

Abstract Background Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations. Methods A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7Â years and 63.2Â years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses. Results Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC. Conclusions Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time

Applying an Indicator Set to Survey the Health ofPeople With Intellectual Disabilities in Europe

Abstract  This report gives an account of applying a health survey tool by the Pomona Group that earlier documented the process of developing a set of health indicators for people with intellectual disabilities in Europe. The Pomona health indicator set mirrors the much larger set of health indicators prepared by the European Community Health Indicators group for the general population in Europe. The 18 indicators are classified under four categories: demographic characteristics, health status, health determinants, and health systems. After 3 years of collaborative project activity, key areas have been identified to heighten the visibility of people with intellectual disabilities in the public health domain so as to address evident health inequalities or disparities