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IMPORTANCE: High-quality evidence on how to improve palliative care in nursing homes is lacking. OBJECTIVE: To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. DESIGN, SETTING, AND PARTICIPANTS: A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio. INTERVENTIONS: The PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death. MAIN OUTCOMES AND MEASURES: The primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1). RESULTS: Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents’ comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, −0.55; 95% CI, −1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018. CONCLUSIONS AND RELEVANCE: Residents’ comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important. TRIAL REGISTRATION: ISRCTN Identifier: ISRCTN14741671

‘Atypisch.’ Zo omschrijft prof. dr. Myrra Vernooij-Dassende carrière die haar tot de toppen van de wetenschap bracht. In oktober nam zij afscheid als hoogleraar ‘Psychosociale aspecten van zorg voor kwetsbare ouderen’ aan het Radboudumc in Nijmegen. Zij was directeur van het Radboud Alzheimer Centrum, begeleidde 32 promovendi en publiceerde meer dan tweehonderd internationale artikelen. ‘Het is heerlijk je bezig te kunnen houden met onderzoek dat evident maatschappelijk nut heeft. Ik ben ontzettend dankbaar dat ik daaraan heb mogen bijdragen.’

Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD.

Depression in nursing-home residents is often under-recognised. We aimed to establish the effectiveness of a structural approach to its management.

Organizational culture is seen as having a growing impact on quality and safety of health care, but its impact on hospital to community patient discharge is relatively unknown.

Deciding about the organ donation of one’s brain-dead beloved often occurs in an unexpected and delicate situation. We explored the decision making of the relatives of potential brain-dead donors, its evaluation, and the factors influencing decision making.

Poor social health has been linked to a risk of neuropsychiatric disorders. Neuroimaging studies have shown associations between social health and global white matter microstructural integrity. We aimed to identify which white matter tracts are involved in these associations.

OBJECTIVE: To assess the cost effectiveness of community based occupational therapy compared with usual care in older patients with dementia and their care givers from a societal viewpoint. Design Cost effectiveness study alongside a single blind randomised controlled trial. Setting Memory clinic, day clinic of a geriatrics department, and participants’ homes. Patients 135 patients aged ≥65 with mild to moderate dementia living in the community and their primary care givers. Intervention 10 sessions of occupational therapy over five weeks, including cognitive and behavioural interventions, to train patients in the use of aids to compensate for cognitive decline and care givers in coping behaviours and supervision. MAIN OUTCOME MEASURES: Incremental cost effectiveness ratio expressed as the difference in mean total care costs per successful treatment (that is, a combined patient and care giver outcome measure of clinically relevant improvement on process, performance, and competence scales) at three months after randomisation. Bootstrap methods used to determine confidence intervals for these measures. RESULTS: The intervention cost €1183 (£848, $1738) (95% confidence interval €1128 (£808, $1657) to €1239 (£888, $1820)) per patient and primary care giver unit at three months. Visits to general practitioners and hospital doctors cost the same in both groups but total mean costs were €1748 (£1279, $2621) lower in the intervention group, with the main cost savings in informal care. There was a significant difference in proportions of successful treatments of 36% at three months. The number needed to treat for successful treatment at three months was 2.8 (2.7 to 2.9). CONCLUSIONS: Community occupational therapy intervention for patients with dementia and their care givers is successful and cost effective, especially in terms of informal care giving.

Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.

Abstract

The objective of this pilot study was to explore the effects of occupational therapy on the performance of daily activities by older individuals with cognitive impairments and on the sense of competence of their primary caregivers. The design was a single group design. Older individuals with cognitive impairments and their primary caregivers were assessed prior to the first occupational therapy visit in hospital and after 5 weeks of occupational therapy at home. Participants were older individuals with mild to moderate cognitive impairments living at home (n = 12) and their primary caregivers (n = 12). These older clients with cognitive impairments and their primary caregivers received an occupational therapy intervention in hospital and at home after discharge in accordance with an occupational therapy guideline. This guideline is client-centered and makes use of collaborative, psychosocial, and environmental approaches. The main outcome measures were older clients' motor and process skills, initiative, need for assistance, self-perception in occupational performance, and satisfaction with this performance in daily activities and primary caregivers' sense of competence. The results of this study indicated that older clients' motor and process skills and self-perception in occupational performance improved and that they needed less help. The sense of competence of their primary caregivers also improved. This study provides preliminary evidence for the effectiveness of occupational therapy in older individuals with cognitive impairments and their primary caregivers, which should be tested in a randomized, controlled trial.

Palliative care should fit the needs of individual cancer patients and their families. Instruments can help to improve needs assessment. This review evaluates questionnaires for the systematic assessment of needs experienced by individual cancer patients for help, care, or support, as well as the needs of their family members. The MEDLINE and PsycLIT data bases were searched systematically. Questionnaires were evaluated by reviewing their contents and estimating their validity, reliability, and feasibility for use in caregiving practice. Analysis of the 471 articles identified from the searches yielded 9 questionnaires for the assessment of patients' needs and 6 questionnaires for the assessment of family members' needs. Most of these instruments were carefully constructed; their validity and reliability were satisfactory and well documented. However, in most questionnaires the needs for care were confounded by satisfaction with care, and the problems experienced by patients. Only one questionnaire for patients specifically addressed the need for help; none for family members was so specific. Data on the feasibility of questionnaires for use in regular care were scarce. Issues frequently omitted were spiritual issues, the personal needs of family members, and the continuity of care. None of the instruments the authors found was complete for all dimensions of palliative care. Most instruments were constructed for research purposes and had not been tested for use in practical care. Further development of practical instruments based on a theoretical concept of needs assessment seems necessary. The feasibility of instruments for use in practical caregiving and their effects on the quality of care needs further research. Cancer 2000;88:900–11. © 2000 American Cancer Society.

Social health markers have been linked to the development of dementia. We hypothesize that social health affects brain structure and consequently influences cognitive function. We aim to elucidate the cross-sectional and longitudinal associations between social health markers and structural brain changes in older adults in the general population.

Dans la démence, les troubles cognitifs et psychologiques peuvent altérer les interactions sociales. Nous avons peu d’information sur les interactions sociales entre personnes vivant avec une démence en institution.

OBJECTIVE: To determine the effectiveness of community based occupational therapy on daily functioning of patients with dementia and the sense of competence of their care givers. Design Single blind randomised controlled trial. Assessors were blinded for treatment allocation. Setting Memory clinic and day clinic of a geriatrics department and participants' homes. Participants 135 patients aged ≥65 with mild to moderate dementia living in the community and their primary care givers. Interventions 10 sessions of occupational therapy over five weeks, including cognitive and behavioural interventions, to train patients in the use of aids to compensate for cognitive decline and care givers in coping behaviours and supervision. MAIN OUTCOME MEASURES: Patients' daily functioning assessed with the assessment of motor and process skills (AMPS) and the performance scale of the interview of deterioration in daily activities in dementia (IDDD). Care giver burden assessed with the sense of competence questionnaire (SCQ). Participants were evaluated at baseline, six weeks, and three months. RESULTS: Scores improved significantly relative to baseline in patients and care givers in the intervention group compared with the controls (differences were 1.5 (95% confidence interval 1.3 to 1.7) for the process scale; –11.7 (–13.6 to –9.7) for the performance scale; and (11.0; 9.2 to 12.8) for the competence scale). This improvement was still significant at three months. The number needed to treat to reach a clinically relevant improvement in motor and process skills score was 1.3 (1.2 to 1.4) at six weeks. Effect sizes were 2.5, 2.3, and 1.2, respectively, at six weeks and 2.7, 2.4, and 0.8, respectively, at 12 weeks. CONCLUSIONS: Occupational therapy improved patients' daily functioning and reduced the burden on the care giver, despite the patients' limited learning ability. Effects were still present at 12 weeks, which justifies implementation of this intervention. Trial registration Clinical Trials NCT00295152.