Papers by Wilco P Achterberg
Drugs & aging, Feb 24, 2024
BMC Geriatrics, Sep 2, 2014
Background: Although dementia at the end of life is increasingly being studied, we lack prospecti... more Background: Although dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life. Methods: When the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0-10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0-27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14-42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0-9), were used. Information on care, medical treatment and treatment decisions were also collected. Results: Twenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once. Conclusion: In these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.
Cambridge University Press eBooks, Jun 9, 2022
Innovation in Aging, Dec 1, 2021
Exploring the relationship between cognition and cancer is increasingly important as the number o... more Exploring the relationship between cognition and cancer is increasingly important as the number of older adults in the US grows. The Health and Retirement Study (HRS) has longitudinal data on cognitive status and self-reported cancer diagnoses, but these self-reports have not been validated. Using HRS linked to Medicare Fee for Service (FFS) claims (1998)(1999)(2000)(2001)(2002)(2003)(2004)(2005)(2006)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016), we evaluated the validity of self-reported cancer diagnoses (excluding non-melanoma skin) against Medicare claims by respondent cognitive status. We included 8,280 Medicare-eligible HRS participants aged ≥67 with at least 90% FFS coverage. Cognitive status was ascertained from the HRS interview following the date of cancer diagnosis (or reference claim date) using the Langa-Weir method and was classified as normal, cognitive impairment no dementia (CIND), or dementia. We calculated the sensitivity, specificity, and Cohen's kappa for first incident malignant cancer diagnosis by cognitive status group. The majority (76.4%) of participants scored as cognitively normal, 9.6% had CIND, 14.0% had dementia and, overall, 1,478 had an incident cancer diagnosis. Among participants with normal cognition, sensitivity of self-reported cancer diagnosis was 70.2% and specificity was 99.8% (kappa=0.79). Among participants with CIND, sensitivity was 56.7% and specificity was 99.8% (kappa=0.66). Among participants with dementia, sensitivity was 53.0% and specificity was 99.6% (kappa=0.64). Results indicate poor validity of self-reported cancer diagnoses for older adults with CIND or dementia. These findings suggest researchers interested in cancer and cognition should use the HRS-Medicare linkage to ascertain cancer diagnosis from claims, and they highlight the importance of cognitive status in research among older adults.
Public Health and primary careGeriatrics in primary car
Innovation in Aging, Nov 1, 2019
People with advanced dementia often die in nursing homes. Family caregivers frequently feel that ... more People with advanced dementia often die in nursing homes. Family caregivers frequently feel that their loved one's quality of life and dying is suboptimal. The daily Namaste Care Family program -derived from the US Namaste Care program-involves family caregivers and integrates personalized care with meaningful activities for people with advanced dementia. A cluster-randomized controlled trial (December 2016 -December 2018) examined effects of the Namaste Care Family program on resident and family caregiver outcomes. Ten Dutch nursing homes implemented Namaste Care Family for 117 residents, while nine nursing homes provided usual care for 114 residents in the study. Nursing staff assessed quality of life over the last week with the Quality of Life in Late-Stage Dementia (QUALID, the primary resident outcome measure). Research assistants observed discomfort during the sessions with the Discomfort Scale-Dementia of Alzheimer Type (DS-DAT). Assessments were at baseline and after 1, 3, 6, and 12 months. We found a significant difference in QUALID score at 12 months favoring quality of life in the intervention group. Further, the intervention group showed less signs of discomfort at 3, 6, and 12 months compared with the control group. The Namaste Care Family program can improve quality of life of people with advanced dementia in the long run. These study findings support sustained implementation of the daily program in nursing homes. Further analyses of effects on the other outcomes will include blinded DS-DAT assessments, more secondary outcome measures and family caregiver outcomes.
Aging & Mental Health, Mar 4, 2021
OBJECTIVES Coping strategies may play an important role as facilitator or barrier for functional ... more OBJECTIVES Coping strategies may play an important role as facilitator or barrier for functional recovery after hip fracture. This study explored 1] active and passive coping strategies in hip fracture patients within inpatient geriatric rehabilitation (GR) 2] the association of these coping strategies with depression, anxiety, pain and health-related quality of life (HRQoL). METHOD Secondary data analysis (FIT-HIP trial). Participants were patients with hip fracture, aged 65+ years, admitted to post-acute GR units. Coping was assessed using the 'Active Tackling' and 'Passive Reacting' subscale of Utrecht Coping List (UCL). Depression, anxiety, pain and HRQoL was assessed using GDS-8, HADS-A, NPRS and EQ5D-VAS. Based on UCL norm tables - for both subscales - we dichotomized the group into (extremely) high use of this coping strategy i.e. 'predominantly active coping' (PAC), and 'predominantly passive coping' (PPC); versus their corresponding 'residual groups', i.e. the remaining participants. RESULTS 72 participants were included. Participants mostly used active coping (PAC: 33.3%), however those engaging in passive coping (23.6%) had significantly more depression and anxiety symptoms (GDS-8 ≥ 3: 31.1% respectively 9.1%, p = 0.040; HADS-A ≥ 7: 58.8% vs 10.9%; p = 0.00). CONCLUSION Active tackling and passive reacting coping strategies are used by up to one-third of patients with recent hip fracture. Passive coping was associated with more symptoms of depression and anxiety, which in turn may influence rehabilitation negatively. Screening of (passive) coping strategies could contribute to prompt identification of hip fracture patients at risk for negative health outcomes.
BMC Medicine, Dec 1, 2020
Background: The objectives of this study are to determine the effects of regularly scheduled admi... more Background: The objectives of this study are to determine the effects of regularly scheduled administration of paracetamol (acetaminophen) on quality of life (QoL), discomfort, pain and neuropsychiatric symptoms of persons with dementia living in long-term care facilities (LTCFs). Methods: A multicentre randomised double-blind placebo-controlled crossover trial for 13 weeks (January 2018 to June 2019) in 17 LTCFs across the west of the Netherlands. Inclusion criteria were age ≥ 65 years, (advanced) dementia and a moderate to low QoL, independent of the presence of pain (QUALIDEM ≤ 70). Exclusion criteria were the use of regular pain treatment, allergies to the study medication, severe liver disease, use of > 4 units of alcohol/day, weight < 50 kg and/or concomitant use of flucloxacillin. Participants received study medication (paracetamol/placebo) in two periods of 6 weeks each (1 week in between as a wash-out period). Randomisation decided in which order participants received paracetamol and placebo. Primary outcomes included QoL (QUALIDEM) and discomfort (DS-DAT), secondary outcomes included pain (MOBID-2) and neuropsychiatric symptoms (NPI-NH). Results: Ninety-five LTCF residents (mean age 83.9 years [SD 7.6], 57.9% females) were included. Repeated linear mixed models showed no difference in mean differences of QUALIDEM (paracetamol +1.3 [95% CI -1.0-3.5], placebo +1.5 [95% CI -0.7-3.8]), DS-DAT (paracetamol -0.1 [95% CI -1.4-1.2], placebo 0.6 [95 CI -0.7-1.8]), MOBID-2 (paracetamol 0.0 [95% CI -0.5-0.5], placebo -0.2 [95% CI -0.7-0.3]) and NPI-NH (paracetamol +1.5 [95% CI -2.3-5.4], placebo -2.1 [95% CI -6.0-1.7]) in favour of either paracetamol or placebo.
Disability and Rehabilitation, Jan 14, 2015
Purpose: To assess the measurement properties of the Falls Efficacy Scale-International (FES-I) i... more Purpose: To assess the measurement properties of the Falls Efficacy Scale-International (FES-I) in patients after a hip fracture aged ! 65 years. Methods: In a sample of 100 patients, we examined the structural validity, internal consistency and construct validity. For the structural validity a confirmatory factor analysis was carried out. For construct validity predetermined hypotheses were tested. In a second sample of 21 older patients the inter-rater reliability was evaluated. Results: The factor analysis yielded strong evidence that the FES-I is uni-dimensional in patients with a hip fracture; the Cronbach's alpha was 0.94. When testing the reliability, the intra-class correlation coefficient was 0.72, while the Standard Error of Measurement was 6.4 and the Smallest Detectable Change was 17.7 (on a scale from 16 to 64). The Spearman correlation of the FES-I with the one-item fear of falling instrument was high (r ¼ 0.68). The correlation was moderate with instruments measuring functional performance constructs and low with instruments measuring psychological constructs. Conclusions: Reliability and structural validity of the FES-I in patients after a hip fracture are good. The construct validity appears more closely related to functional performance constructs than to psychological constructs, suggesting that the concept measured by the FES-I may not capture all aspects of fear of falling. ä Implications for Rehabilitation The Falls Efficacy Scale-International (FES-I), which is commonly used to measure fear of falling in community-dwelling older persons, can also be used to assess fear of falling in patients after a hip fracture. The reliability and the structural validity of the FES-I for these hip patients are good, whereas the construct validity of the FES-I is not optimal. The FES-I may not capture all aspects of fear of falling and may be more closely related to functional performance than to psychological concepts such as anxiety.
Journal of the American Medical Directors Association, Nov 1, 2019
Objectives: In residents with dementia living in a long-term care facility (LTCF), un(der)treated... more Objectives: In residents with dementia living in a long-term care facility (LTCF), un(der)treated pain may trigger behavioral disturbances, mood syndromes, and deterioration of physical functioning and selfmaintenance. Because these factors can have considerable impact on the quality of life (QoL), this study aimed to (1) compare characteristics of persons with advanced dementia living in LTCFs with and without pain medication; (2) compare QoL in these persons with and without pain, stratified by type of pain medication use; and (3) explore associations between the use of paracetamol and QoL in persons with advanced dementia living in LTCFs. Design and setting: This study analyzed baseline data from the Communication, Systematic Assessment and Treatment of Pain, Medication Review, Occupational Therapy, and Safety Study; a multicenter, cluster-randomized effectiveness-implementation clinical hybrid trial in 67 Norwegian LTCF clusters. Participants: In total, 407 LTCF residents (rural and urban areas) aged !65 years, with Functional Assessment Staging scores of 5e7 (ie, moderate to advanced dementia). Main outcome measure: QoL as assessed by the 6 QUALIDEM (validated questionnaire to measure QoL in persons with dementia living in LTCF) domains applicable to persons with moderate to severe dementia. The association between QoL and paracetamol was estimated using linear mixed-effect models, adjusting for confounding variables. Results: 62.0% used pain medication (paracetamol, opioids, or both). QoL was lower in residents using pain medication, compared with those without pain medication [mean QUALIDEM score 68.8 (standard deviation 17.4 vs) 75.5 (standard deviation 14.6), respectively, P < .001). Multilevel analysis showed that paracetamol use was not associated with QoL. Conclusions and Implications: Persons with advanced dementia living in LTCF using pain medication have a lower QoL compared with those not using pain medication. These results are of key importance for the clinician because they stress the need for regular medication review and pain management. When measured cross-sectionally, use of paracetamol is not associated with increased QoL.
Healthcare, Jul 16, 2021
The recognition and treatment of pain in nursing home residents presents challenges best addresse... more The recognition and treatment of pain in nursing home residents presents challenges best addressed by a multidisciplinary approach. This approach is also recommended in the applicable Dutch guideline; however, translating guidelines into practical strategies is often difficult in nursing homes. Nevertheless, a better understanding of guideline implementation is key to improving the quality of care. Here we describe and qualitatively evaluate the implementation process of the multidisciplinary guideline 'Recognition and treatment of chronic pain in vulnerable elderly' in a Dutch nursing home. The researchers used interviews and document analyses to study the nursing home's implementation of the guideline. The project team of the nursing home first filled out an implementation matrix to formulate goals based on preferred knowledge, attitudes, and behaviors for the defined target groups. Together with experts and organizations, pharmacotherapy audit meetings were organized, an expert pain team was appointed, a policy document and policy flowchart were prepared, and 'anchor personnel' were assigned to disseminate knowledge amongst professionals. Implementation was partially successful and resulted in a functioning pain team, a pain policy, the selection of preferred measurement instruments, and pain becoming a fixed topic during multidisciplinary meetings. Nevertheless, relatively few professionals were aware of the implementation process.
BMC Health Services Research, Nov 2, 2022
Objectives: To investigate the association between clinical, demographic, and organizational fact... more Objectives: To investigate the association between clinical, demographic, and organizational factors and formal (health professionals) and informal (relatives) resource utilization in nursing home patients with and without dementia. Methods: Baseline data from the multicomponent cluster randomized control COSMOS trial including 33 Norwegian nursing homes and 723 residents with and without dementia. Nursing home staff (n = 117) participated as proxy raters to approximate formal and informal resource use in daily care. The primary outcome was the Resource Utilization in Dementia -Formal Care scale to assess formal and informal care time in hours/month regarding basic activities of daily living (ADL), instrumental ADL, and supervision. Secondary outcomes were hours/week spent on formal and informal leisure activities. Behavioral and psychological symptoms in dementia (BPSD) were assessed by the Neuropsychiatric Inventory-Nursing Home version, physical function by the Physical Self-Maintenance Scale, and psychotropic drug use by the Anatomical Therapeutic Chemical classification system. Organizational factors were ward size and staff ratio. Results: Generalized linear mixed-effect models and two-part modelling revealed an association between increased formal care time and poorer physical function, higher agitation and psychotropic drug use and lower cognitive function (all p < .05). Enhanced formal leisure time was related to better ADL function (p < .05) and smaller wards (p < .05). The family related leisure time was associated with agitation, decline in ADL function, smaller wards, and better staffing ratio (all p < .05). Married patients received more informal direct care (p < .05) and leisure time (p < .05) compared to unmarried/widowed. For nursing home staff, higher agitation and psychotropic drug use, and lower cognitive function, is associated with more direct care time, whereas leisure time activities are less prioritized in people with lower physical function. Informal caregivers' engagement is encouraged by smaller nursing homes and better staff ratio. Therefore,
European Geriatric Medicine, Feb 14, 2023
Aim To describe the care provided in the Netherlands in geriatric rehabilitation (GR) after a hip... more Aim To describe the care provided in the Netherlands in geriatric rehabilitation (GR) after a hip fracture, using care pathways and diagnosis treatment combinations from various geriatric rehabilitation facilities. Findings Care provided in GR after hip fracture is difficult to define due to the diversity in care pathways and large practice variation. Message Further research is needed to investigate whether a standardized care pathway is effective for GR.
Journal of the American Medical Directors Association, 2021
OBJECTIVES In nursing homes (NHs), 30% to 60% of patients experience daily pain and >80% have ... more OBJECTIVES In nursing homes (NHs), 30% to 60% of patients experience daily pain and >80% have dementia. This can lead to neuropsychiatric symptoms, including psychosis symptoms such as delusion. We investigated if there was a relationship between pain and psychosis symptoms over time. We also aimed to investigate the effect of a multicomponent intervention (COSMOS) on pain, psychosis symptoms, and analgesic prescription. DESIGN COSMOS is a cluster-randomized, single blinded, controlled trial. Each NH unit was defined as a cluster and randomized to either the COSMOS intervention or care as usual. The COSMOS intervention is a multicomponent intervention, consisting of staff training in communication, pain treatment, medication review, organization of activities, and safety. The intervention lasted for 4 months with a follow-up at month 9. SETTING AND PARTICIPANTS Sixty-seven units from 33 Norwegian NHs in 8 municipalities. The study included 723 patients aged ≥65 years, residing at the NH ≥2 weeks before inclusion. Patients with a life expectancy <6 months were excluded. MEASURES Pain was measured using the Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale. Psychosis symptoms were measured using the Neuropsychiatric Inventory-NH version. Measurements were performed at baseline, and months 4 and 9. RESULTS Multilevel Mixed-Effect statistical analysis found that psychosis symptoms as a group (odds ratio [OR] 2.03, P = .009), and delusion (OR 2.12, P = .007) were associated with pain over time. No significant intervention effect on psychosis symptoms was observed. Compared with the control group, people with dementia in the intervention group experienced less musculoskeletal pain (β: -0.47, P = .047). Analgesic prescription was not affected by the intervention. CONCLUSION AND IMPLICATIONS Pain is associated with psychosis symptoms, and pain assessment should be done when making treatment decisions on psychosis symptoms in NH patients. The COSMOS intervention improved musculoskeletal pain in people with dementia, but not psychosis symptoms, and there is need for further studies on treatment of psychosis symptoms in NH patients.
Clinical Interventions in Aging, Feb 1, 2019
Purpose: To investigate the reliability of a weighted version of the Functional Comorbidity Index... more Purpose: To investigate the reliability of a weighted version of the Functional Comorbidity Index (w-FCI) compared with that of the original Functional Comorbidity Index (FCI) and to test its usability. Patients and methods: Sixteen physicians collected data from 102 residents who lived in 16 different nursing homes in the Netherlands. A multicenter, prospective observational study was carried out in combination with a qualitative part using the three-step test interview, in which participants completed the w-FCI while thinking aloud and being observed, and were then interviewed afterward. To analyze inter-rater reliability, a subset of 41 residents participated. The qualitative part of the study was completed by eleven elderly care physicians and one advanced nurse practitioner. Measurements: The w-FCI was composed of the original FCI supplemented with a severity rating per comorbidity, ranging from 0 (disease absent) to 3 (severe impact on daily function). The w-FCI was filled out at baseline by 16 physicians and again 2 months later to establish intra-rater reliability (intraclass correlations; ICCs). For inter-rater reliability, four pairs of raters completed the w-FCI independently from each other. Results: The ICCs were 0.90 (FCI) and 0.94 (w-FCI) for intra-rater reliability, and 0.61 (FCI) and 0.55 (w-FCI) for inter-rater reliability. Regarding usability of the w-FCI, five meaningful themes emerged from the qualitative data: 1) sources of information; 2) deciding on the presence or absence of disease; 3) severity of comorbidities; 4) usefulness; and 5) content. The intra-rater reliability of the FCI and the w-FCI was excellent, whereas the inter-rater reliability was moderate for both indices. Based on the present results, a modified w-FCI is proposed that is acceptable and feasible for use in older patients and requires further investigation to study its (predictive) validity.
Journal of Palliative Care, Oct 5, 2022
help (6%; f ¼ 15), and finding a quiet place or spending time alone (5%; f ¼ 12). The top 5 resid... more help (6%; f ¼ 15), and finding a quiet place or spending time alone (5%; f ¼ 12). The top 5 resident behaviors staff members found the most challenging were yelling or hitting (20%; f ¼ 46), manipulative interactions (16%; f ¼ 37), repetitive questions (14%; f ¼ 33), impatience and demanding (10%; f ¼ 23), and rudeness or use of foul language (9.5%; f ¼ 22). Conclusion/Discussion: Results suggest that many nursing home staff
Tijdschrift Voor Verpleeghuisgeneeskunde, Dec 1, 2002
Carolina Digital Repository (University of North Carolina at Chapel Hill), 2012
Purpose Quality of care for long-term care (LTC) residents with dementia at the end-of-life is of... more Purpose Quality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes. Methods We performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands. Results Instruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach's alpha was mostly adequate. The EOLD-CAD showed good fit with pre-assumed factor structures. The EOLD-SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD-CAD and MSSE for measuring QOD. The POS performed worst in this population. Conclusions Our comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia. Keywords Measures Á Quality of care Á Quality of dying Á Long-term care Á Dementia Á Psychometric properties Abbreviations AL Assisted living BANS-S Bedford alzheimer nursing severity-scale CCC Concordance correlation coefficients CFA Confirmatory factor analysis CFI Comparative fit index DS-DAT Discomfort scale-dementia of alzheimer type DSI Decision satisfaction inventory EOLD End-of-life in dementia EOLD-CAD EOLD-comfort assessment in dying EOLD-SM EOLD-symptom management EOLD-SWC EOLD-satisfaction with care FATES Family assessment of treatment at the end-of-life-short version
Innovation in Aging, Dec 1, 2020
Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including ad... more Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.
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Papers by Wilco P Achterberg