Prevalence and burden of pain across the entire spectrum of Huntington's disease.

BACKGROUND: Pain is an important symptom in Huntington's disease (HD), however, not systematically studied and understood. The objective of the current study is to assess the prevalence of pain, pain interference in daily activities, painful conditions, analgesic use and the severity of the pain burden across different disease stages and 'Age at symptom Onset' groups. Additionally, the association between pain and disease burden was investigated. METHODS: A cross-sectional analysis was conducted within two large data sets, which included different types of pain scales. Multivariable logistic regression analyses and analyses of variance were performed to compare the pain levels with those in the general population. The analyses were adjusted for sex and age. Locally Estimated Scatterplot Smoothing was used to test the association between pain and the HD pathology score: a measure of disease burden. RESULTS: The mean prevalence of pain in the HD population was 40% and for pain interference around 35% in both data sets. Patients in the early, middle and late stage of HD experience more pain burden compared with what is reported in patients with chronic pain (p<0.01). A positive and significant association was demonstrated between pain and disease burden. Patients in late stage HD with pain use significantly less analgesics compared with the general population (5% vs 13%, respectively (p<0.01)). CONCLUSIONS: Pain is a prevalent and important symptom in HD. Severe pain burden in the HD population is present and positively associated with disease burden. Risk for undertreatment with analgesics is nevertheless present. Awareness of pain in HD needs to be increased, both clinically and scientifically.

Effects of the discontinuation of antihypertensive treatment on neuropsychiatric symptoms and quality of life in nursing home residents with dementia (DANTON): a multicentre, open-label, blinded-outcome, randomised controlled trial.

BACKGROUND: Based on observational studies and randomised controlled trials (RCTs), the benefit-harm balance of antihypertensive treatment in older adults with dementia is unclear. OBJECTIVE: To assess whether discontinuing antihypertensive treatment reduces neuropsychiatric symptoms (NPSs) and maintains quality of life (QoL) in nursing home residents with dementia. DESIGN: Open-label, blinded-outcome RCT. Randomisation 1:1, stratified by nursing home organisation and baseline NPS. Trial registration: NL7365. SUBJECTS: Dutch long-term care residents with moderate-to-severe dementia and systolic blood pressure (SBP) ≤160 mmHg during antihypertensive treatment. Exclusion criteria included heart failure NYHA-class-III/IV, recent cardiovascular events/procedures or life expectancy <4 months (planned sample size n = 492). MEASUREMENTS: Co-primary outcomes NPS (Neuropsychiatric Inventory-Nursing Home [NPI-NH]) and QoL (Qualidem) at 16 weeks. RESULTS: From 9 November 2018 to 4 May 2021, 205 participants (median age 85.8 [IQR 79.6-89.5] years; 79.5% female; median SBP 134 [IQR 123-146] mmHg) were randomised to either antihypertensive treatment discontinuation (n = 101) or usual care (n = 104). Safety concerns, combined with lacking benefits, prompted the data safety and monitoring board to advice a premature cessation of randomisation. At 16-week follow-up, no significant differences were found between groups for NPI-NH (adjusted mean difference 1.6 [95% CI -2.3 to 5.6]; P = 0.42) or Qualidem (adjusted mean difference - 2.5 [95% CI -6.0 to 1.0]; P = 0.15). Serious adverse events (SAEs) occurred in 36% (discontinuation) and 24% (usual care) of the participants (adjusted hazard ratio 1.65 [95% CI 0.98-2.79]). All 32-week outcomes favoured usual care. CONCLUSION: Halfway through this study, a non-significant increased SAE risk associated with discontinuing antihypertensive treatment was observed, and an associated interim analysis showed that significant worthwhile health gain for discontinuation of antihypertensive treatment was unlikely. This unbeneficial benefit-harm balance shows that discontinuation of antihypertensive treatment in this context does not appear to be either safe or beneficial enough to be recommended in older adults with dementia.

Post-COVID-19 patients in geriatric rehabilitation substantially recover in daily functioning and quality of life.

BACKGROUND: After an acute infection, older persons may benefit from geriatric rehabilitation (GR). OBJECTIVES: This study describes the recovery trajectories of post-COVID-19 patients undergoing GR and explores whether frailty is associated with recovery. DESIGN: Multicentre prospective cohort study. SETTING: 59 GR facilities in 10 European countries. PARTICIPANTS: Post-COVID-19 patients admitted to GR between October 2020 and October 2021. METHODS: Patients' characteristics, daily functioning (Barthel index; BI), quality of life (QoL; EQ-5D-5L) and frailty (Clinical Frailty Scale; CFS) were collected at admission, discharge, 6 weeks and 6 months after discharge. We used linear mixed models to examine the trajectories of daily functioning and QoL. RESULTS: 723 participants were included with a mean age of 75 (SD: 9.91) years. Most participants were pre-frail to frail (median [interquartile range] CFS 6.0 [5.0-7.0]) at admission. After admission, the BI first steeply increased from 11.31 with 2.51 (SE 0.15, P < 0.001) points per month and stabilised around 17.0 (quadratic slope: -0.26, SE 0.02, P < 0.001). Similarly, EQ-5D-5L first steeply increased from 0.569 with 0.126 points per month (SE 0.008, P < 0.001) and stabilised around 0.8 (quadratic slope: -0.014, SE 0.001, P < 0.001). Functional recovery rates were independent of frailty level at admission. QoL was lower at admission for frailer participants, but increased faster, stabilising at almost equal QoL values for frail, pre-frail and fit patients. CONCLUSIONS: Post-COVID-19 patients admitted to GR showed substantial recovery in daily functioning and QoL. Frailty at GR admission was not associated with recovery and should not be a reason to exclude patients from GR.

The effect of paracetamol on care dependency and daily functioning in persons with advanced dementia living in long-term care facilities.

BACKGROUND: Pain medication may have an impact on the quality of life (QoL) in persons with dementia, but may also influence care dependency and daily functioning. The aim of this study is to investigate the effect of regularly scheduled paracetamol on care dependency and daily functioning in persons with advanced dementia with low QoL living in long-term care facilities. METHODS: The Quality of life and Paracetamol In advanced Dementia (Q-PID) study was a (block) randomized double-blind placebo-controlled crossover trial with paracetamol and placebo across seventeen long-term care facilities across 9 care organizations in the western region of the Netherlands. Participants were ≥ 65 years, had advanced dementia (Global Deterioration Scale 5-7), and low QoL (QUALIDEM-6D score ≤ 70). Measurements were performed by nursing staff at the start and at the end of each treatment period of six weeks. Repeated linear mixed models were used to compute differences between randomization groups, with adjustment for period and order effects, and psychotropic use. RESULTS: Ninety-five persons (mean age of 83.9 years, 57.4% female) were enrolled in the Q-PID study. The mean Care Dependency Scale total score was 37.8 (Standard Deviation [SD] 12.9) and the mean Katz-15 total score was 11.9 (SD 2.4). Repeated linear mixed models showed no difference in mean differences of care dependency (paracetamol - 1.0 [95% Confidence Interval (CI) -2.4-0.3], placebo + 0.1 [-1.3-1.5]), and daily functioning (paracetamol + 0.2 [95% CI -0.2-0.6], placebo + 0.1 [-0.3-0.4]). CONCLUSIONS: Compared to placebo, no effect of scheduled administration of paracetamol was found on care dependency and daily functioning in persons with advanced dementia with low QoL. Future research should focus on which specific items of care dependency need special attention to improve the care for persons with advanced dementia. A multi-domain approach is needed to enhance and/or maintain QoL of persons with advanced dementia. TRIAL REGISTRATION: Netherlands Trial Register (NTR6766); http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6766 ; Trial registration date: 20/10/2017.

Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement.

BACKGROUND: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. METHODS: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. RESULTS: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. CONCLUSIONS: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons' ownership of the research process. TRIAL REGISTRATION: Prospero 2021: CRD42021253736.

An exploration of relocation initiatives deployed within and between nursing homes: a qualitative study.

BACKGROUND: Relocations within and between nursing homes often induce stress, anxiety, and depression in residents and cause additional workload for and burnout in staff. To prevent this, many nursing homes deploy pre-transition initiatives, bridging initiatives, and post-transition initiatives to support residents and staff during the relocation process. As little is known about these initiatives, this study aims to explore the pre-relocation, bridging and post-relocation initiatives used for relocations within and between nursing homes. METHODS: In seven Dutch nursing homes, eight focus groups were conducted with two to six participants (N = 37) who were actively involved in relocation processes in different roles (i.e., managers, healthcare professionals, support staff, client council members, residents and family). The focus groups were conducted based on a predefined topic list and lasted approximately 60 min. The transcripts were recorded, transcribed verbatim and analysed using thematic coding. RESULTS: Nursing homes had to be inventive in developing relocation initiatives as neither shared guidelines nor knowledge exchange on this topic were available. A total of thirty-seven relocation initiatives were identified in these seven nursing homes. Nineteen pre-relocation initiatives were identified, of which eight emphasized information and engagement, three highlighted training and practice and eight stressed orientation and visualization. Seven bridging initiatives were identified, of which four emphasized coordination and continuity and three highlighted entertainment and celebration. Eleven post-relocation initiatives were identified, of which seven emphasized evaluation and troubleshooting and four highlighted change and adjustment. CONCLUSION: The identified relocation initiatives were developed unassisted by nursing homes, due to a lack of shared guidelines, knowledge exchange and mutual learning on this topic. Therefore, it may be expedient and more effective to develop general guidelines for relocations within and between nursing homes in collaboration with nursing homes.

Noninvasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: a scoping review.

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted. Manuscripts were included if they were written in English, Dutch, German, French, Japanese or Chinese, if the monitoring technology measured discomfort or distressing symptoms, was noninvasive, could be continuously administered for 4 hours and was potentially applicable for bed-ridden people. The screening was performed by two researchers independently. Information about the technology, its clinimetrics (validity, reliability, sensitivity, specificity, responsiveness), acceptability, and feasibility were extracted. RESULTS: Of the 3,414 identified manuscripts, 229 met the eligibility criteria. A variety of monitoring technologies were identified, including actigraphy, brain activity monitoring, electrocardiography, electrodermal activity monitoring, surface electromyography, incontinence sensors, multimodal systems, and noncontact monitoring systems. The main indicators of discomfort monitored by these technologies were sleep, level of consciousness, risk of pressure ulcers, urinary incontinence, agitation, and pain. For the end-of-life phase, brain activity monitors could be helpful and acceptable to monitor the level of consciousness during palliative sedation. However, no manuscripts have reported on the clinimetrics, feasibility, and acceptability of the other technologies for the end-of-life phase. CONCLUSIONS: Noninvasive monitoring technologies are available to measure common symptoms at the end of life. Future research should evaluate the quality of evidence provided by existing studies and investigate the feasibility, acceptability, and usefulness of these technologies in the end-of-life setting. Guidelines for studies on healthcare technologies should be better implemented and further developed.

Factors influencing interprofessional collaboration in general and during multidisciplinary team meetings in long-term care and geriatric rehabilitation: a qualitative study.

BACKGROUND: Interprofessional collaboration is essential to maintain high-quality care in long-term care and geriatric rehabilitation. However, little is known regarding perceived factors influencing interprofessional collaboration by people involved in care. This concerns both long-term care and geriatric rehabilitation. Moreover, knowledge of using patient outcome measures to enhance interprofessional collaboration during multidisciplinary team meetings is insufficient. This study examined the perceived facilitators of and barriers to interprofessional collaboration in general and during multidisciplinary team meetings, specifically according to healthcare professionals, patients, and informal caregivers. Differences between long-term care and geriatric rehabilitation were also investigated. Finally, it was examined which patient outcome measures were used in multidisciplinary team meetings. METHODS: A constructivist qualitative study using 10 focus groups and 18 semi-structured interviews with 14 patients, 13 informal caregivers,10 managers, and 22 healthcare professionals from eight Dutch long-term care and geriatric rehabilitation facilities. A combined inductive and deductive approach to a thematic analysis was performed. RESULTS: The perceived influencing factors of interprofessional collaboration were classified into two general themes: (1) 'Involvement of patient, informal caregiver, and healthcare professional', categorised into: 'participation of patients and informal caregivers', 'behaviour and attitude of team members', 'expectations of team members towards each other', and 'exchange of information, knowledge, and reciprocity in communication'; and (2) 'A systematic approach to providing care for older people', consisting of: 'coordination of team procedures', and 'coordination of organisational procedures'. Also, one theme for multidisciplinary team meetings was identified: 'Organised participation of patient, informal caregiver, and healthcare professional in multidisciplinary team meeting, categorised into: 'team procedures', 'working systematically', and 'participation in multidisciplinary team meetings. Standardised patient outcome measures were scarcely used in multidisciplinary team meetings. CONCLUSION: People involved in long-term care and geriatric rehabilitation indicated that, apart from working systematically, being involved in care and multidisciplinary team meetings are essential factors for interprofessional collaboration. These factors must be taken into consideration to provide valuable, high-quality care to older people residing in long-term care and geriatric. TRIAL REGISTRATION: Not applicable.

Movement Patterns in Older Adults Recovering From Hip Fracture.

The aim of this study was to quantify physical activity and sedentary behavior in older adults recovering from hip fracture and to identify groups based on movement patterns. In this cross-sectional cohort study, older adults (≥70 years) were included 3 months after surgery for proximal femoral fracture. Patients received an accelerometer for 7 days. Demographics and outcomes related to physical function, mobility, cognitive functions, quality of life, and hip fracture were assessed. In total, 43 patients with sufficient accelerometer wear time were included. Across all groups, participants engaged in very low levels of physical activity, spending an average of 11 hr/day in prolonged sedentary behavior. Based on the extracted components from a principal component analysis, three groups with substantial differences in levels of physical activity and sedentary behavior could be distinguished.

Current Pyuria Cutoffs Promote Inappropriate Urinary Tract Infection Diagnosis in Older Women.

BACKGROUND: Pre-existing lower urinary tract symptoms (LUTS), cognitive impairment, and the high prevalence of asymptomatic bacteriuria (ASB) complicate the diagnosis of urinary tract infection (UTI) in older women. The presence of pyuria remains the cornerstone of UTI diagnosis. However, >90% of ASB patients have pyuria, prompting unnecessary treatment. We quantified pyuria by automated microscopy and flowcytometry to determine the diagnostic accuracy for UTI and to derive pyuria thresholds for UTI in older women. METHODS: Women ≥65 years with ≥2 new-onset LUTS and 1 uropathogen ≥104 colony-forming units (CFU)/mL were included in the UTI group. Controls were asymptomatic and classified as ASB (1 uropathogen ≥105 CFU/mL), negative culture, or mixed flora. Patients with an indwelling catheter or antimicrobial pretreatment were excluded. Leukocyte medians were compared and sensitivity-specificity pairs were derived from a receiver operating characteristic curve. RESULTS: We included 164 participants. UTI patients had higher median urinary leukocytes compared with control patients (microscopy: 900 vs 26 leukocytes/µL; flowcytometry: 1575 vs 23 leukocytes/µL; P < .001). Area under the curve was 0.93 for both methods. At a cutoff of 264 leukocytes/µL, sensitivity and specificity of microscopy were 88% (positive and negative likelihood ratio: 7.2 and 0.1, respectively). The commonly used cutoff of 10 leukocytes/µL had a poor specificity (36%) and a sensitivity of 100%. CONCLUSIONS: The degree of pyuria can help to distinguish UTI in older women from ASB and asymptomatic controls with pyuria. Current pyuria cutoffs are too low and promote inappropriate UTI diagnosis in older women. Clinical Trials Registration. International Clinical Trials Registry Platform: NL9477 (https://trialsearch.who.int/Trial2.aspx?TrialID=NL9477).

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

Palliative care in advanced Huntington's disease: a scoping review.

BACKGROUND: As Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care. OBJECTIVE: To review the literature focusing on palliative care in advanced stage HD, and the level of evidence. METHODS: Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute. RESULTS: Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III). CONCLUSIONS: To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

Measuring Pain in Aphasia: Validity and Reliability of the PACSLAC-D.

BACKGROUND: Post-stroke pain in patients with an inability to communicate is not systematically assessed and therefore not sufficiently treated. This stresses the need to study pain assessment instruments that do not require good communication skills. AIM: To examine the validity and reliability of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D) in stroke patients with aphasia. METHOD: Sixty stroke patients (mean age 79.3 years, standard deviation [SD] 8.0), of whom 27 had aphasia were observed during rest, activities of daily living (ADL), and physiotherapy using the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D). The observations were repeated after two weeks. To examine convergent validity, correlations between the PACSLAC-D, self-report pain scales, and the clinical judgment of a health care professional (pain present yes/no) were used. To examine discriminative validity, differences in pain were investigated between rest and ADL, in patients who use pain medication and those who do not, and in patients with and without aphasia. Internal consistency and test-retest reliability were assessed to determine reliability. RESULTS: Convergent validity failed to meet the acceptable threshold during rest but was adequate during ADL and physiotherapy. Discriminative validity was only adequate during ADL. The internal consistency was 0.33 during rest, 0.71 during ADL, and 0.65 during physiotherapy. Test-retest reliability varied from poor during rest (intraclass correlation coefficient [ICC] = 0.07; 95% confidence interval [CI]: -0.40-0.51) to excellent during physiotherapy (ICC = 0.95; 95% CI: 0.83-0.98). CONCLUSIONS: The PACSLAC-D captures pain in patients with aphasia who are unable to self-report, during ADL and physiotherapy, but may be less accurate during rest.

Becoming a physician for older patients: exploring the professional identity formation of medical students during a nursing home clerkship. A qualitative study.

BACKGROUND: To prepare medical students for the growing population of older patients, an appropriate professional identity formation is desirable. The community of practice of medical school is primarily hospital-based and disease-oriented which will lead to the development of a physician who is mainly focused on cure. This focus alone however is not always appropriate for older persons' health care. The aim of this study is to explore the influence of participating in a nursing home community of practice on the professional identity formation of medical students. METHODS: A qualitative study based on a constructivist research paradigm was conducted, using individual semi-structured, in-depth interviews and a visual narrative method (drawing) as a prompt. Thematic analysis was applied to structure and interpret the data. The study population consisted of fifth-year medical students participating in a six-week nursing home clerkship. Thirteen participants were purposefully sampled. The clerkship took place in nursing homes in the South-West of the Netherlands. RESULTS: The medical students described the nursing home as the living environment of the patients. Actively participating in the patients' care and experiencing the daily life of the patients was meaningful for the physician the students want to become in five ways: (1) a physician with a complete picture; (2) a physician who is close; (3) a physician who is in dialogue; (4) a physician who is able to let go and (5) a physican who collaborates. CONCLUSIONS: Caring for older patients in the nursing home influences the professional identity formation of medical students. Patient-centeredness, personal, holistic and tailored care, approachability and collaboration are important characteristics in becoming a physician for older persons' health care. The context of this care provides relevant learning experiences for this development and the becoming of a physician in general.

Professional identity formation of medical students in relation to the care of older persons: a review of the literature.

With the growing population of older persons, medical students have to be well prepared for older persons' health care during medical school. Becoming a doctor is an interplay of building competencies and developing a professional identity. Professional identity formation of medical students is a relatively new educational concept in geriatric medical education. This review aims to explore the concept of professional identity formation of undergraduate medical students in relation to the care of older persons. Twenty-three peer-reviewed studies were included and summarized narratively. Patient-centeredness, caring and compassion, collaboration and holistic care are characteristics of the doctor's professional identity in relation to the care of older persons. Participating in the context of older persons' health care contributes to the becoming of a doctor in general. In this context, the building of relationships with older persons, participating in their lives and role models are important influencers of professional identity formation. Furthermore, the perceptions and expectations medical students have of future doctoring influence their feelings about the care of older persons. To prepare medical students for older persons' health care, professional identity formation seems to be a relevant educational concept.

Making progress: but a way to go-the age and ageing care-home collection.

Care homes enable people with advanced physical and cognitive impairment to live well with 24-h support from staff. They are a feature of care systems in most countries. They have proved pivotal to the coronavirus disease 2019 (COVID-19) response. We searched Age and Ageing for care-home articles published since 2015. From these we collated 42 into the Age and Ageing care-home collection. This collection draws together important papers that show how Age and Ageing is helping to shape and grow care-home research. The  collection outlines the technical issues that researchers face by grouping together important feasibility trials conducted in the sector. It looks at the challenges of measuring quality of life and working with routine data in care homes. It brings together observational studies considering loneliness, functional dependency, stroke outcomes, prescribing and acute deterioration. Health services research in care homes is represented by two studies that demonstrate realist evaluation as a way to make sense of service innovations. Papers are included that consider: non-pharmacological strategies for residents with dementia, end-of-life care, sexuality and intimacy and the care-home workforce. Given the importance of the COVID-19 pandemic in care homes, all of the care home COVID-19 papers published in Age and Ageing to date are included. Finally, a group of papers that present innovative approaches to research in care homes, each of which give voice to residents and/or staff, are collated and presented as a way of moving towards a more resident and care home centred research agenda.

Mandatory vaccination against COVID-19 for health and social care workers caring for older people.

The COVID-19 pandemic has particularly adversely affected older people with frailty and functional dependency. Essential regular contact with care staff has been evidenced as an important source of infection for this group. Vaccinating care staff can reduce the incidence, duration and severity of infection, preventing onward transmission to older people and minimising the harm associated with discontinuity caused by staff absence. Voluntary vaccination programmes for staff are more likely to be effective when associated with information and education, community engagement and financial incentives, but programmes using all of these approaches have failed to establish consistently high vaccination rates among care staff during the pandemic. Mandatory vaccination, proposed as a solution in some countries, can increase vaccination rates. It is only ethical if a vaccine is effective and cost-effective, the risk associated with vaccinating care workers is proportionate to the risk reduction achieved through vaccination, and where all efforts to encourage voluntary vaccination have been exhausted. Even when these conditions have been met, careful attention is required to ensure that the penalties associated with conscientious objection are proportionate and to ensure that implementation is equitable in a way that does not disadvantage particular groups of staff.

From Warkworth House to the 21st century care homes: progress marked by persistent challenges.

Long-term care homes play an essential role within health and social care. Successful measures to support older people at home for longer have led to increased prevalence of disability, frailty and cognitive impairment in those who live in care homes over the last two decades. The need for care home places is projected to increase for the next two decades. Modern care homes provide care for people who are predominantly over 80, have multiple long-term conditions, take multiple medicines, are physically dependent and live with cognitive impairment. Residents do better when services recognise the contributions of staff and care home providers rather than treating residents as individual patients living in a communal setting. There is a strong case given residents' frailty, multimorbidity and disability, that care should be structured around Comprehensive Geriatric Assessment (CGA). Care should be designed to allow opportunities for multiprofessional teams to come together for CGA, particularly if healthcare professionals are based outside care homes. Good data about care homes and residents are central to efforts to deliver high quality care-in some countries, these data are collected but not collated. Collating such data is a priority. Care home staff are under-recognised and underpaid-parity of pay and opportunity with NHS staff is the bare minimum to ensure that the best are recruited and retained in the sector. During the COVID-19 pandemic, residents and relatives have frequently been left out of decisions about policies that affect them, and better consultation is needed to deliver high quality care.