Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Assessment of patient symptom burden and information needs helps tailoring palliative care consultations: An observational study.

OBJECTIVE: The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. METHODS: Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0-10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. RESULTS: Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57-72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1-38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. CONCLUSION: Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored information-provision includes inviting patients to also discuss topics they did not consider themselves.

Probable Pain on the Pain Assessment in Impaired Cognition (PAIC15) Instrument: Assessing Sensitivity and Specificity of Cut-Offs against Three Standards.

Observational pain scales can help to identify pain in persons with dementia who may have difficulty expressing pain verbally. The Pain Assessment in Impaired Cognition-15 (PAIC15) covers 15 items that indicate pain, but it is unclear how probable pain is, for each summed score (range 0-45). We aimed to determine sensitivity and specificity of cut-offs for probable pain on the PAIC15 against three standards: (1) self-report when able, (2) the established Pain Assessment in Advanced Dementia (PAINAD) cut-off of 2, and (3) observer's overall estimate based on a series of systematic observations. We used data of 238 nursing home residents with dementia who were observed by their physician in training or nursing staff in the context of an evidence-based medicine (EBM) training study, with re-assessment after 2 months in 137 residents. The area under the ROC curve was excellent against the PAINAD cut-off (≥0.8) but acceptable or less than acceptable for the other two standards. Across standards and criteria for optimal sensitivity and specificity, PAIC15 scores of 3 and higher represent possible pain for screening in practice, with sensitivity and specificity against self-report in the 0.5 to 0.7 range. While sensitivity for screening in practice may be too low, a cut-off of 4 is reasonable to indicate probable pain in research.

Reform influences location of death: Interrupted time-series analysis on older adults and persons with dementia.

BACKGROUND: Norway instituted a Coordination Reform in 2012 aimed at maximizing time at home by providing in-home care through community services. Dying in a hospital can be highly stressful for patients and families. Persons with dementia are particularly vulnerable to negative outcomes in hospital. This study aims to describe changes in the proportion of older adults with and without dementia dying in nursing homes, home, hospital and other locations over an 11-year period covering the reform. METHODS AND FINDINGS: This is a repeated cross-sectional, population-level study using mortality data from the Norwegian Cause of Death Registry hosted by the Norwegian Institute of Public Health. Participants were Norwegian older adults 65 years or older with and without dementia who died from 2006 to 2017. The policy intervention was the 2012 Coordination Reform that increased care infrastructure into communities. The primary outcome was location of death listed as a nursing home, home, hospital or other location. The trend in the proportion of location of death, before and after the reform was estimated using an interrupted time-series analysis. All analyses were adjusted for sex and seasonality. Of the 417,862 older adult decedents, 61,940 (14.8%) had dementia identified on their death certificate. Nursing home deaths increased over time while hospital deaths decreased for the total population (adjusted Relative Risk Ratio (aRRR) 0.87, 95% CI 0.82-0.92) and persons with dementia (aRRR: 0.93, 95%CI 0.91-0.96) after reform implementation. CONCLUSION: This study provides evidence that the 2012 Coordination Reform was associated with decreased older adults dying in hospital and increased nursing home death; however, the number of people dying at home did not change.

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial.

BACKGROUND: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia. METHODS: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated. RESULTS: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 €, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 €/unit of effect extra was 0.70 for the QUALID, QALY and GAIN. CONCLUSIONS: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable. TRIAL REGISTRATION: Netherlands Trial Register ( http://www.trialregister.nl/trialreg/index.asp , identifier: NL5570, date of registration: 2016/03/23).

Observational pain assessment in older persons with dementia in four countries: Observer agreement of items and factor structure of the Pain Assessment in Impaired Cognition.

BACKGROUND: Recognition of pain in people with dementia is challenging. Observational scales have been developed, but there is a need to harmonize and improve the assessment process. In EU initiative COST-Action TD1005, 36 promising items were selected from existing scales to be tested further. We aimed to study the observer agreement of each item, and to analyse the factor structure of the complete set. METHODS: One hundred and ninety older persons with dementia were recruited in four different countries (Italy, Serbia, Spain and The Netherlands) from different types of healthcare facilities. Patients represented a convenience sample, with no pre-selection on presence of (suspected) pain. The Pain Assessment in Impaired Cognition (PAIC, research version) item pool includes facial expressions of pain (15 items), body movements (10 items) and vocalizations (11 items). Participants were observed by health professionals in two situations, at rest and during movement. Intrarater and interrater reliability was analysed by percentage agreement. The factor structure was examined with principal component analysis with orthogonal rotation. RESULTS: Health professionals performed observations in 40-57 patients in each country. Intrarater and interrater agreement was generally high (≥70%). However, for some facial expression items, agreement was sometimes below 70%. Factor analyses showed a six-component solution, which were named as follows: Vocal pain expression, Face anatomical descriptors, Protective body movements, Vocal defence, Tension and Lack of affect. CONCLUSIONS: Observation of PAIC items can be done reliably in healthcare settings. Observer agreement is quite promising already without extensive training. SIGNIFICANCE: In this international project, promising items from existing observational pain scales were identified and evaluated regarding their reliability as an alternative to pain self-report in people with dementia. Analysis on factor structure helped to understand the character of the items. Health professionals from four countries using four different European languages were able to rate items reliably. The results contributed to an informed reduction of items for a clinical observer scale (Pain Assessment in Impaired Cognition scale with 15 items: PAIC15).

The Pain Assessment in Impaired Cognition scale (PAIC15): A multidisciplinary and international approach to develop and test a meta-tool for pain assessment in impaired cognition, especially dementia.

BACKGROUND: Over the last decades, a considerable number of observational scales have been developed to assess pain in persons with dementia. The time seems ripe now to build on the knowledge and expertize implemented in these scales to form an improved, "best-of" meta-tool. The EU-COST initiative "Pain in impaired cognition, especially dementia" aimed to do this by selecting items out of existing observational scales and critically re-assessing their suitability to detect pain in dementia. This paper reports on the final phase of this collaborative task. METHODS: Items from existing observational pain scales were tested for "frequency of occurrence (item difficulty)," "reliability" and "validity." This psychometric testing was carried out in eight countries, in different healthcare settings, and included clinical as well as experimental pain conditions. RESULTS: Across all studies, 587 persons with dementia, 27 individuals with intellectual disability, 12 Huntington's disease patients and 59 cognitively healthy controls were observed during rest and movement situations or while receiving experimental pressure pain, respectively. The psychometric outcomes for each item across the different studies were evaluated within an international and multidisciplinary team of experts and led a final selection of 15 items (5x facial expressions, 5x body movements, 5x vocalizations). CONCLUSIONS: The final list of 15 observational items have demonstrated psychometric quality and clinical usefulness both in their former scales and in the present international evaluation; accordingly, they qualified twice to form a new internationally agreed-on meta-tool for Pain Assessment in Impaired Cognition, the PAIC-15 scale. SIGNIFICANCE: Using a meta-tool approach by building on previous observational pain assessment scales and putting the items of these scales through rigorous empirical testing (using experimental as well as clinical pain studies in several European countries), we were able to identify the best items for pain assessment in individuals with impaired cognition. These selected items form the novel PAIC15 scale (pain assessment in impaired cognition, 15 items).

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial.

INTRODUCTION: Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable. METHODS AND ANALYSIS: Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed. ETHICS AND DISSEMINATION: The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate. TRIAL REGISTRATION NUMBER: NTR5692.

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

BACKGROUND: Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. METHODS/DESIGN: We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. DISCUSSION: This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Effect of tailored antibiotic stewardship programmes on the appropriateness of antibiotic prescribing in nursing homes.

OBJECTIVES: To evaluate the effect of tailored interventions on the appropriateness of decisions to prescribe or withhold antibiotics, antibiotic use and guideline-adherent antibiotic selection in nursing homes (NHs). METHODS: We conducted a quasi-experimental study in 10 NHs in the Netherlands. A participatory action research (PAR) approach was applied, with local stakeholders in charge of selecting tailored interventions based on opportunities for improved antibiotic prescribing that they derived from provided baseline data. An algorithm was used to evaluate the appropriateness of prescribing decisions, based on infections recorded by physicians. Effects of the interventions on the appropriateness of prescribing decisions were analysed with a multilevel logistic regression model. Pharmacy data were used to calculate differences in antibiotic use and recorded infections were used to calculate differences in guideline-adherent antibiotic selection. RESULTS: The appropriateness of 1059 prescribing decisions was assessed. Adjusting for pre-test differences in the proportion of appropriate prescribing decisions (intervention, 82%; control, 70%), post-test appropriateness did not differ between groups (crude: P = 0.26; adjusted for covariates: P = 0.35). We observed more appropriate prescribing decisions at the start of data collection and before receiving feedback on prescribing behaviour. No changes in antibiotic use or guideline-adherent antibiotic selection were observed in intervention NHs. CONCLUSIONS: The PAR approach, or the way PAR was applied in the study, was not effective in improving antibiotic prescribing behaviour. The study findings suggest that drawing prescribers' attention to prescribing behaviour and monitoring activities, and increasing use of diagnostic resources may be promising interventions to improve antibiotic prescribing in NHs.

[Retrospective assessment of the Dutch version of the Discomfort Scale--Dementia of Alzheimer Type (DS-DAT): is estimation sufficiently valid and reliable?]. / Retrospectieve afname van de Nederlandse versie van de Discomfort Scale--Dementia of Alzheimer type (DS-DAT): is inschatten achteraf voldoende valide en betrouwbaar?

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) measures discomfort in severely demented patients with scores on nine items with behavioral descriptors. Direct observation of behaviour is the preferred method in severely demented patients, but is not feasible for some types of research. Alternatively, a patient's score may be assessed 'retrospectively', scoring an overall picture of the patient. To assess validity and reliability of such retrospective assessments, five observers--three nursing home physicians and two paramedicals--gave a DS-DAT score for 77 nursing home patients by direct observation, and, two weeks later, retrospectively. The mean score of the five observers was not different. The Intra-class Correlation Coefficient for intra-observer reliability was 0.50 for the five observers, and 0.55 for the three nursing home physicians. Our study demonstrated the possibility of a reasonably valid, but moderately reliable retrospective assessment of the Dutch version of the DS-DAT. Appropriate training of nursing home physicians who know their patients well may be required for this.