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.

Oral symptoms in dying nursing home patients. Results from the prospective REDIC study.

BACKGROUND: The mouth is a central organ for communication and fluid intake, also for dying nursing home patients. This study describes the prevalence and severity of oral symptoms from nursing home admission until the day of perceived dying and the day of death. METHODS: A prospective, longitudinal cohort study including 696 patients who were admitted to 47 Norwegian nursing homes in 35 municipalities. During the first year of their stay, 189 died (27%), of whom 82 participants were assessed on the day they were perceived as dying and 134 on the day of death. Mouth care, nutrition, and bedsores were assessed with the Residents' Assessment Instrument for nursing homes (RAI-NH) and palliative care (RAI-PC). Pain intensity was assessed with the Mobilization-Observation-Behaviour-Intensity-Dementia-2 Pain Scale (MOBID-2). RESULTS: The proportion of patients with ≥ 6 oral symptoms increased from 16% when perceived as dying to 20% on the day of death (P = 0.001). On the day of death, xerostomia (66%), dysphagia (59%), and mastication problems (50%) were the most frequently observed oral symptoms. Only 16% received mouth care every hour and 12% were in pain during this procedure. Compared to people without dementia, those with a diagnosis of dementia at admission (N = 112, 86%) had xerostomia and mastication problems more frequently (50% vs. 73%; 32% vs. 56% (P = 0.038), respectively) on the day of death. CONCLUSIONS: The high extent of oral symptoms such as xerostomia, dysphagia, and mastication problems underline the need for systematic assessment and improved oral palliative care for dying nursing home patients with dementia. TRIAL REGISTRATION: Clinicaltrials.gov NCT01920100 08/08/2013. First submission to BMC oral 15/03/2023.

The impact of medication reviews by general practitioners on psychotropic drug use and behavioral and psychological symptoms in home-dwelling people with dementia: results from the multicomponent cluster randomized controlled LIVE@Home.Path trial.

BACKGROUND: There is limited knowledge regarding the process of deprescribing psychotropic drugs to people with dementia (PwD) conducted by general practitioners (GP). We investigated the impact of a multicomponent intervention, emphasizing medication reviews, on psychotropic drugs and behavioral and psychological symptoms (BPSD) in home-dwelling PwD and quantified change in patient-GP communication evaluated by their informal caregivers. METHODS: LIVE@Home.Path is a stepped-wedge closed-cohort cluster randomized controlled trial for people with mild to moderate dementia aged ≥65 and their informal caregivers (dyads) in Norway. Complementary to health care as usual (control condition), municipal coordinators implemented the multicomponent LIVE intervention: Learning, Innovation, Volunteer support, and Empowerment (including medication review by the PwD's regular GPs). Block-randomization was used to allocate dyads in three groups receiving the intervention sequentially in periods of 6 months duration. Prepandemic data from the first period is reported, resulting in a 1:2 intervention-to-control ratio. Primary outcome was change in psychotropic drug use. Secondary outcomes were changes in BPSD by Neuropsychiatric Inventory and Cornell Scale of Depression in Dementia and patient-GP communication by an adaption of the Clinical Global Impression of Change. RESULTS: Four hundred thirty-eight dyads were screened, 280 included, and 237 participated at 6 months (intervention group n=67; control condition n=170). At baseline, 63% used psychotropic medication regularly: antidementia drugs (47%), antidepressants (13%), hypnotics/sedatives (13%), antipsychotics (5%), and anxiolytics (2%). At 6 months, medication reviews were more frequently conducted in the intervention group compared to control (66% vs 42%, P=0.001). We found no differences regarding a change in drug use and BPSD. Patient-GP communication enhanced in the intervention group (mean score 0.95 [standard deviation 1.68] vs 0.41 [1.34], P=0.022). In the intervention group, control group, and overall sample, the informal caregivers of those who had their medications reviewed reported improved patient-GP communication compared to those who did not. CONCLUSIONS: Change in psychotropic drug use and BPSD did not differ, even though patient-GP communication improved with medication reviews. Restricted psychotropic drug use among PwD likely reflects more judicious prescribing practices in recent years. Nevertheless, medication reviews could be cultivated to optimize pharmacologic treatment for this complex population. TRIAL REGISTRATION: ClinicalTrials.gov : NCT04043364 ; registered 15/03/2019.

Promotors and barriers to the implementation and adoption of assistive technology and telecare for people with dementia and their caregivers: a systematic review of the literature.

BACKGROUND: One of the most pressing issues in our society is the provision of proper care and treatment for the growing global health challenge of ageing. Assistive Technology and Telecare (ATT) is a key component in facilitation of safer, longer, and independent living for people with dementia (PwD) and has the potential to extend valuable care and support for caregivers globally. The objective of this study was to identify promotors and barriers to implementation and adoption of ATT for PwD and their informal (family and friends) and formal (healthcare professionals) caregivers. METHODS: Five databases Medline (Ovid), CINAHL, Web of Science, APA PsycINFO and EMBASE were searched. PRISMA guidelines have been used to guide all processes and results. Retrieved studies were qualitative, mixed-method and quantitative, screened using Rayyan and overall quality assessed using Critical Appraisal Skills Programme (CASP) and Mixed Methods Assessment Tool (MMAT). Certainty of evidence was assessed using Grading of Recommendations Assessment, Development and Evaluation (GRADE) criteria and assigned within categories of high, moderate, or low. NVivo was used for synthesis and analysis of article content. A narrative synthesis combines the study findings. RESULTS: Thirty studies (7 quantitative, 19 qualitative and 4 mixed methods) met the inclusion criteria. Identified primary promotors for the implementation and adoption of ATT were: personalized training and co-designed solutions, safety for the PwD, involvement of all relevant stakeholders, ease of use and support, and cultural relevance. Main barriers for the implementation and adoption of ATT included: unintended adverse consequences, timing and disease progress, technology anxiety, system failures, digital divide, and lack of access to or knowledge of available ATT. CONCLUSION: The most crucial elements for the adoption of ATT in the future will be a focus on co-design, improved involvement of relevant stakeholders, and the adaptability (tailoring related to context) of ATT solutions over time (disease process).

Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial.

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. MEASUREMENTS: 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. CONCLUSION: 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, we recommend stakeholders and healthcare professionals to consider these clinical and organizational factors to optimize treatment and leisure time activities in nursing home patients with various needs. TRIAL REGISTRATION: ClinicalTrials.gov ; NCT02238652.

Pain in nursing home residents with dementia and its association to quality of life.

OBJECTIVES: We aimed to describe pain, use of analgesics and quality of life (QoL) in people with dementia admitted to a Norwegian nursing home (NH), and to explore if and how pain was associated with their QoL when adjusting for sociodemographic characteristics, other health conditions and use of analgesics. METHOD: A total of 953 Norwegian NH residents with dementia (mean age 84.0, SD 7.5 years, 35.8% men) were included at admission to the NH. Pain and QoL were assessed using the Mobilization-Observation-Behavior-Intensity-Dementia-2 (MOBID-2) Pain Scale and the Quality of Life in Late-Stage Dementia (QUALID) scale, respectively. Severity of dementia, personal level of activities of daily living, general medical health, neuropsychiatric symptoms, and the use of psychotropic drugs and analgesics were assessed. RESULTS: In total, 36% of the participants had clinically relevant pain intensity (MOBID-2 ≥ 3) and 52% received analgesics. Paracetamol was most frequently prescribed (45%). In an adjusted linear mixed model, more severe pain was associated with higher QUALID total scores, indicating poorer QoL (regression coefficient 0.52, 95% CI 0.36-0.69). CONCLUSION: Pain prevalence at NH admission was high in residents with dementia; half used analgesics, particularly paracetamol. More severe pain was associated with poorer QoL when adjusting for sociodemographic characteristics, other health conditions, and use of analgesics. The routine assessment of pain at NH admission can uncover undiagnosed and untreated pain and allow for adequate non-pharmacological and pharmacological pain management and likely increased QoL.

Healthcare professionals' perceptions of dignity-preserving care for older home-dwelling women with incurable cancer in Norway.

Municipal end-of-life care for older home-dwelling patients with cancer is a complex matter requiring healthcare professionals (HCPs) to recognize gender differences in a social, historical and organizational context. A qualitative approach was chosen to explore and identify HCPs value-based principles and organizational conditions promoting dignity-preserving care practice for these women. HCPs recognized the importance of sheltering the women's identity, their sense of being home and acknowledged their personal preferences as value-based principles, whereas creating a flexible culture of care, establishing a functional professional collaboration and developing individualized plans of care, were crucial organizational conditions influencing the practice of dignity-preserving care.

Less Is More: The Impact of Deprescribing Psychotropic Drugs on Behavioral and Psychological Symptoms and Daily Functioning in Nursing Home Patients. Results From the Cluster-Randomized Controlled COSMOS Trial.

OBJECTIVE: To investigate the impact of medication reviews using collegial mentoring and systematic clinical evaluation on psychotropic prescriptions, behavioral and psychological symptoms of dementia (BPSD), and activities of daily living (ADL). DESIGN: Four-month multicenter, multicomponent, cluster-randomized, single-blinded controlled trial. SETTING: Thirty-three Norwegian nursing homes including 67 nursing home wards (clusters). PARTICIPANTS: A total of 723 enrolled patients, of which 428 participated in the study; 217 were randomized to the intervention and 211 to care as usual (control). INTERVENTION: The COSMOS intervention consisted of Communication, Systematic pain management, Medication reviews, Organization of activities, and Safety. During medication review, the nursing home physician evaluated treatment with colleagues systematically using the results from validated clinical assessments. MEASUREMENTS: Mean changes from baseline to month 4 in the number of prescribed psychotropic drugs (antipsychotics, anxiolytics, hypnotics or sedatives, antidepressants, and antidementia drugs); Neuropsychiatric Inventory Nursing Home Version (NPI-NH) and Cornell Scale of Depression in Dementia (CSDD); Lawton and Brody's Physical Self Maintenance Scale (PSMS). RESULTS: Compared to control, the mean change in prescribed psychotropic drugs was reduced both in total and regular number, while mean changes in NPI-NH and CSDD scores did not differ between the groups. Mean change in PSMS showed improvement in the intervention group, and deterioration in the control group. CONCLUSION: Medication reviews using collegial mentoring and systematic clinical evaluation led to safe deprescribing, as the reductions in psychotropic drug use did not negatively affect BPSD, while ADL improved.

Blood pressure, antihypertensive medication and neuropsychiatric symptoms in older people with dementia: The COSMOS study.

OBJECTIVES: Neuropsychiatric symptoms (NPS) are very common in older patients with dementia. There is increasing evidence that hypoperfusion of the brain plays a role in the development of NPS. The aim of this study is to assess whether there is an association between low systolic blood pressure (SBP) and NPS and if NPS are more prevalent in older people with dementia using antihypertensive medication. METHODS: We studied the baseline data from participants in the Communication, Systematic pain treatment, Medication review, Organized activities and Safety study, a multicenter clustered trial with 765 participants from 72 nursing home units from 37 nursing homes in Norway. SBP (lowest quartile vs rest) and use of antihypertensive medication were predictors and Neuropsychiatric Inventory-Nursing Home version (NPI-NH) score (total and clusters) was the outcome. Missing data were imputed, except for missing data in predictors. We used a mixed model analysis adjusted for age, sex and Minimal Mental State Examination (MMSE) score. In a sensitivity analysis, continuous SBP values were used. RESULTS: In total, 412 patients were included with a mean age of 86.9 years, 53.9% had a MMSE score of <11. There was no difference in total NPI-NH score between low and high SBP (difference -1.07, Pdj = 0.62). There was no difference between high and low SBP and the NPI clusters. The use of antihypertensive medication was not associated with a different total or cluster NPI-NH score compared to no use (difference -0.99, Padj = 0.95, Pall = 0.37-0.99, respectively). In the sensitivity analyses with the continuous SBP levels, there was no association between SBP and NPI-NH score (estimate 1.00, 95%CI 0.98-1.01, P = 0.25). CONCLUSION: We found no association between low SBP and NPS, nor between antihypertensive use and NPS.

The effects of bright light treatment on affective symptoms in people with dementia: a 24-week cluster randomized controlled trial.

BACKGROUND: The majority of people with dementia have behavioral and psychological symptoms of dementia (BPSD), including depression, anxiety and agitation. These may be elicited or aggravated by disrupted circadian rhythms. Bright light treatment (BLT) is a promising non-pharmacological approach to the management of BPSD, but previous research has yielded mixed results. METHODS: Eight nursing home dementia units (1 unit = 1 cluster) with 78 patients were invited to participate in a cluster randomized controlled trial from September 2017 to April 2018 investigating the effects of BLT on sleep and circadian rhythms (primary outcome) and BPSD (secondary outcome). Ceiling mounted LED-panels were installed in the intervention group (four units), providing light at 1000 lx and 6000 K (vertically at 1.2 m) between 10 a.m. and 3 p.m., with lower values in the mornings and evenings. Standard indoor light was used in the control group (four units). BPSD were assessed with The Cornell Scale for Depression in Dementia (CSDD) and the Neuropsychiatric Inventory Nursing Home Version (NPI-NH). Data collection took place at baseline and after 8, 16 and 24 weeks. Multilevel regression models with and without false discovery rate correction were used for the analysis, with baseline values and dementia stage entered as covariates. RESULTS: Sixty-nine patients were included in the study at baseline. Compared to the control group, the intervention group had a larger reduction on the composite scores of both the CSDD (95% CI = - 6.0 - - 0.3) and the NPI-NH (95% CI = - 2.2 - - 0.1), as well as on the NPI-NH Affect sub-syndrome, and the CSDD Mood related signs sub-scale at follow-up after 16 weeks. With FDR correction, the group difference was significant on the CSDD Mood related signs sub-scale (95% CI = - 2.7 - - 0.8) and the NPI-NH Affect sub-syndrome (95% CI = - 1.6 - - 0.2). No differences were found between conditions at weeks 8 or 24. CONCLUSION: Compared to the control condition, affective symptoms were reduced after 16 weeks in the group receiving BLT, suggesting BLT may be beneficial for nursing home patients with dementia. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03357328 . Retrospectively registered on November 29, 2017.

The longitudinal association between the use of antihypertensive medications and 24-hour sleep in nursing homes: results from the randomized controlled COSMOS trial.

BACKGROUND: Antihypertensive medication use and sleep problems are highly prevalent in nursing home patients. While it is hypothesized that blood pressure and antihypertensive medication use can affect sleep, this has not been investigated in depth in this population. Alongside a multicomponent intervention including a systematic medication review, we aimed to investigate the longitudinal association between antihypertensive medication use, blood pressure and day- and night-time sleep over 4 months. METHODS: This study was based on secondary analyses from the multicomponent cluster randomized controlled COSMOS trial, in which the acronym denotes the intervention: COmmuncation, Systematic pain assessment and treatment, Medication review, Organization of activities and Safety. We included baseline and 4-month follow-up data from a subgroup of nursing home patients who wore actigraphs (n = 107). The subgroup had different levels of blood pressure, from low (< 120) to high (≥ 141). Assessments included blood pressure, antihypertensive medication use, and sleep parameters as assessed by actigraphy. RESULTS: We found a significant reduction in total sleep time at month four in the intervention group compared to the control group. When analysing the control group alone, we found a significant association between antihypertensive medication use and increased daytime sleep. We also found negative associations between blood pressure, antihypertensive medication use and sleep onset latency in the control group. CONCLUSIONS: Our results suggest a correlation between excessive daytime sleep and antihypertensive medication use. These findings should be followed up with further research, and with clinical caution, as antihypertensive medications are frequently used in nursing homes, and sleep problems may be especially detrimental for this population. TRIAL REGISTRATION: The trial is registered at clinicaltrials.gov ( NCT02238652 ).

Access to and interest in assistive technology for home-dwelling people with dementia during the COVID-19 pandemic (PAN.DEM).

The COVID-19 restrictions affect daily living in Norway, including home-dwelling people with dementia, and researchers conducting clinical trials in dementia care. In this paper, we 1) describe the development of a pandemic cohort (PAN.DEM) incorporated in the LIVE@Home.Path, an ongoing clinical intervention trial on resource utilisation including home-dwelling people with dementia and their caregivers (N = 438 dyads), 2) describe pre-pandemic use of assistive technology and 3) explore the extent to which COVID-19 restrictions increase caregivers interest in innovation in the PAN.DEM cohort (N = 126). Our main finding is that assistive technology is available to 71% pre-pandemic; the vast majority utilise traditional stove guards and safety alarms, only a few operate sensor technology, including GPS, fall detectors or communication aids. In response to COVID-19, 17% show increased interest in technology; being less familiar with operating a telephone and having higher cognitive functioning are both associated with increased interest. We conclude that wearable and sensor technology has not yet been fully implemented among people with dementia in Norway, and few caregivers show increased interest under the restrictions. Clinicaltrials.gov (NCT0404336).

The consequences of COVID-19 lockdown for formal and informal resource utilization among home-dwelling people with dementia: results from the prospective PAN.DEM study.

BACKGROUND: COVID-19 isolated home-dwelling people with dementia (PwD) from home care services, respite care, and daytime activities. We aimed to investigate the consequences of these restrictions on informal (family, friends) and formal (homecare staff) resource utilization among co-residing (e.g., spouses) and visiting caregivers (e.g., children). METHODS: 105 PwD (≥65 years old) and their caregivers were included in the prospective PANdemic in DEMentia (PAN.DEM) study, which was initiated when the ongoing stepped-wedge, cluster randomized LIVE@Home.Path trial (N = 438) was temporarily halted due to the pandemic. Primary outcome was change in resource utilization assessed by the Resource Utilization in Dementia Care (RUD) instrument in pre- (12 Dec. 2019 to 11 Mar. 2020) and during the lockdown periods (20 April 2020 to 15 May 2020). Degree of cognitive impairment was assessed by Mini-Mental Status Examination (MMSE), and physical functioning and independent living skills by Physical Self-Maintenance Scale and Lawton Instrumental Activities of Daily Living Scale. Associations between informal and formal care utilization, socio-demographics, and clinical variables were assessed by descriptive statistics and Ordinary Least Squares models (OLS). RESULTS: Mean age for PwD was 81.8 years; 61% were female; 45.6% lived alone, and the mean MMSE score was 20.8 (SD ± 3.7). PwD with co-residents (44%) were younger (78.4 years) than those who were living alone (84.5 years; P < 0.001). During the first 2 months of lockdown, PwD missed on average 20.5 h of formal care in a month (P < 0.001) leading to an approximately 100% increase in informal care, which was particularly pronounced in personal hygiene (6.9 vs. 11.4 days in a month, P < 0.001) and supervision (9.2 vs. 17.6 days in a month; P < 0.001). Visiting caregivers increased by 1.9 days (SD ± 11.5), but co-residing caregivers increased their number of days providing ADL by approximately 7 days per month (ß = 6.9; CI, 0.39-13.1, P < 0.05) after adjusting for PwD and caregiver demographics and clinical variables. Decrease in home nursing care was particularly visible for PwD living alone (- 6.1 vs. -1.3 h per month, P = 0.005). Higher cognitive function (ß = - 0.64, CI, - 1.26 - 0.02, P = 0.044) was associated with reduction in home nursing service during the lockdown. CONCLUSION: The care situation for PwD changed dramatically in the early phase of the COVID-19 pandemic, especially for those living alone who received less support from homecare services and visiting caregivers. For future crises and the forthcoming post-pandemic period, health authorities must plan better and identify and prioritize those in greatest need. TRIAL REGISTRATION: ClinicalTrials.gov ; NCT04043364 .

Dignity of older home-dwelling women nearing end-of-life: Informal caregivers' perception.

BACKGROUND: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss. AIM: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. RESEARCH DESIGN AND METHOD: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. ETHICAL CONSIDERATION: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. RESULTS: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. DISCUSSION AND FINAL CONSIDERATIONS: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients.

Does paracetamol improve quality of life, discomfort, pain and neuropsychiatric symptoms in persons with advanced dementia living in long-term care facilities? A randomised double-blind placebo-controlled crossover (Q-PID) trial.

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. CONCLUSIONS: Compared to placebo, paracetamol showed no positive effect on QoL, discomfort, pain and neuropsychiatric symptoms in persons with advanced dementia with low QoL. It is important to find out more specifically which individual persons with advanced dementia could benefit from pain treatment with paracetamol, and for clinicians to acknowledge that a good assessment, monitoring and multidomain approach is vital for improving QoL in this vulnerable group. TRIAL REGISTRATION: Netherlands Trial Register NTR6766 . Trial registration date: 20 October 2017.

General practitioners' provision of end-of-life care and associations with dying at home: a registry-based longitudinal study.

BACKGROUND: General practitioners (GPs) may play an important role in providing end-of-life care to community-dwelling people. OBJECTIVE: To investigate patients' contacts with GPs, GPs' interdisciplinary collaboration, out-of-hours services and hospitalizations in the last 13 weeks of life and associations with dying at home. Second, investigate whether GP contacts were associated with fewer out-of-hours contacts or days hospitalized. METHODS: Individually linked data from the Norwegian Cause of Death Registry, Norwegian Patient Registry, Statistics Norway and Control and Payment of Reimbursement to Health Service Providers database for all 80 813 deceased people in Norway within 2012-13. Outcomes were analyzed with logistic regression and negative binomial multilevel mixed-effect models. RESULTS: Overall, 1% of people received GP home visits in Week 13 and 4.6% in the last week before death. During the last 4 weeks of life, 9.2% received one or more GP home visits. Altogether, 6.6% received one or more home visits when the GP had one or more interdisciplinary collaborations during the last 4 weeks, of which <3% died at home. GP office consultations decreased towards the end of life. The likelihood of home death versus another location increased in relation to GP home visits [one home visit odds ratio (OR) 1.92, confidence interval (CI) 1.71-2.15; two or more OR 3.49, CI 3.08-3.96] and GP interdisciplinary collaboration (one contact OR 1.76, CI 1.59-1.96; two or more OR 2.52, CI 2.32-2.74). CONCLUSIONS: GPs play a role in enabling people to die at home by performing home visits and collaborating with other health care personnel. Only a minority received such services in Norway.

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study.

BACKGROUND: As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS: Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS: We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION: We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home.

In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women's dignity included having a sense of control, making one's own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.

Home-dwelling persons with dementia's perception on care support: Qualitative study.

BACKGROUND: Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. RESEARCH OBJECTIVE: This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. RESEARCH DESIGN: A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations. PARTICIPANTS AND RESEARCH CONTEXT: Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. ETHICAL CONSIDERATIONS: Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants' integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. FINDINGS: The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants' assessments of daycare centers relied on specific aspects, with high individual variety. DISCUSSION AND CONCLUSION: The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons' everyday life. This indicates that patient participation in decision-making processes for this group is-in addition to be a judicial and ethical requirement-crucial to ensure adequate care and support.

Psychosis symptoms in nursing home residents with and without dementia-Cross-sectional analyses from the COSMOS study.

OBJECTIVE: To investigate the characteristics of nursing home residents with psychosis and the association with potential underlying factors, such as pain, sleep disturbances, and antipsychotic medication. METHOD: Five hundred forty-five residents with and without dementia from 67 Norwegian nursing home units were included in the cross-sectional analyses. Psychosis was the main outcome measure in our study; other outcome measures include quality of life (QoL), activities of daily living (ADL) function, cognitive function, pain, and antipsychotic medication. RESULTS: One hundred twelve residents had one or more symptoms of psychosis, and compared with residents without psychosis, they had lower QoL (p < 0.001), ADL function (p = 0.003), and cognitive functioning (p = 0.001). Adjusted logistic regression analyses showed that psychosis was associated with the prevalence of pain (OR: 3.19; 95% CI, 1.94-5.24), sleep disturbances (OR: 4.51; 95% CI, 2.91-6.99), and total number of medication (OR: 1.10; 95% CI, 1.03-1.17). Residents with psychosis but without antipsychotic medication had better QoL (p = 0.005) compared with residents receiving any antipsychotics. CONCLUSION: Psychosis in NH residents is associated with pain, sleep disturbances, and number of medications. Residents with psychosis have poor QoL, although better QoL was observed among those who did not use antipsychotic medication.