Forskningsartikler

Sammendrag

Seksuelle relasjoner mellom personer med demens som bor på sykehjem, kan skape utfordringer. Demenssykdommer kjennetegnes av kognitiv svikt og kan påvirke personers evne til å ta beslutninger og forstå konsekvenser. Mye tyder på at helselovgivningen ikke gir helse- og omsorgspersonell god nok veiledning når utfordringer oppstår.

I artikkelen drøftes ulike helserettslige utfordringer med utgangspunkt i et empirisk eksempel. Utfordringene omhandler de sykehjemansattes vurdering av plikt og anledning til å gripe inn i en seksuell relasjon, vurdering av frivillighet, vurdering av samtykkekompetanse og involvering av pårørende. Disse komplekse problemstillingene der ulike verdier, faglig kompetanse, menneskerettigheter, helselovgivning og straffebestemmelser må veies opp mot hverandre og ses i sammenheng, ofte av ansatte uten juridisk kompetanse, krever tiltak for å sikre en mer enhetlig tilnærming og likebehandling av personer med demenssykdom på sykehjem. Det økende antallet personer med demens i Norge krever at disse utfordringene får større juridisk oppmerksomhet, og dagens regelsett må ses i sammenheng og lovforståelsen tydeliggjøres i for eksempel faglige veiledere.

Kjersti Wilson, Anne-Lene Egeland Arnesen, Kariann Krohne and Siren Eriksen

Background: Healthcare workers (HCWs) are central and serve in the frontlines when epidemics threaten public health. Thus, certain communities may be hardest hit by these challenges. Interventions supporting HCWs are important, and to develop these, understanding their experiences is essential.

Aim: To explore how HCWs in Norwegian public in-home services experienced work during the COVID-19 pandemic over time.

Method: A longitudinal qualitative study with two data collections approximately one year apart (2021 and 2022) was performed. Individual interviews were conducted with HCWs.

Results: The analysis resulted in six main themes: Changing everything, Redefining ‘necessary tasks’, Distancing and loneliness, Cooperation and coordination, More infections and fewer worries and Lessons for the future. These indicate capabilities and processes, how they are evolving over time, and outcomes. The first two themes focus on the first period of the pandemic, the next two on the ongoing intermediate period, and the final two cover the last period.
Conclusion: The HCWs’ narratives have demonstrated their collective coping based on adaptive and transformative capacities. Further, they have enlisted experienced social resilience in their strategies for coping with the COVID-19 challenges.

Aud Johannessen, Anne-Sofie Helvik, Kjerstin Elisabeth Tevik and Kirsten Thorsen

Objectives: This meta-aggregation aims to interpret and synthesize present knowledge on the lifeworld perspectives of people with dementia and develop a model for guidance in clinical practice.

Method: The data consist of four meta-syntheses describing different lifeworld perspectives in accordance with van Manen’s existentials: lived relations, lived space, lived time and lived body. The meta-aggregation summarizes a range of views expressed by people with dementia in qualitative, interview-based studies, with the aim of generating a reliable model based on the studies’ findings.

Results: In total, 88 studies among 1,191 persons with dementia were included. Sixteen areas of focus were found, representing four perspectives: (a) lived relations, consisting of connectedness, independence, equality and competence; (b) lived space, consisting of belonging, meaningfulness, safety and security, and autonomy; (c) lived time, consisting of being rooted in the past, being in the present, viewing the future and being in process; and (d) lived body, consisting of being functional, trustworthy, adaptable and presentable. A model shaped as a tree trunk captures the lifeworld perspectives of people with dementia.

Conclusion: Sixteen areas were revealed from this meta-aggregation and form the basis of a model. This model may be used as a guide for health care personnel to ensure the overall lifeworld-perspectives of people with dementia in care for the target group and conduct lifeworld-preserving care with a person-centred approach.

Siren Eriksen, Knut Engedal and Ellen Karine Grov

I denne artikkelen viser vi hvordan en gruppe forskere ved Lovisenberg diakonale høgskole og Karlstads universitet i Sverige tar strukturerte grep for å unngå forskningssløseri.

Gunilla Borglin, Siren Eriksen, Cecilia Olsson og Edith Roth Gjevjon

Background: Genome-wide Association Studies (GWAS) have reshaped our understanding of the genetic bases of complex diseases in general and neurodegenerative diseases in particular. Despite being a common disorder, dementia with Lewy bodies (DLB), which, together with Parkinson’s disease dementia (PDD), comprise the umbrella term Lewy body dementias (LBD), is far from being well-characterized genetically. This is primarily due to a lack of familial cases and difficulty recruiting large, deeply characterized cohorts, given the high rate of misdiagnosis. By performing the largest GWAS in DLB, we aimed to identify novel risk loci to gain a better understanding of this disease’s pathobiology. Methods: Here, we conducted the largest meta-analysis of genome-wide association studies performed in LBD, using a total of 5,119 cases and 20,988 controls, from five independent datasets, aggregating all previously published DLB genome-wide association results to date, as well as two previously undescribed cohorts. Additionally, we performed a sex stratified GWAS using the discovery datasets. We updated the heritability estimates for DLB and, to fine map these estimates, we used local heritability analysis. We calculated genetic correlation estimates between DLB and a range of other diseases and traits to identify potential pleiotropy. We also performed gene-set analysis to identify genes with excess burden of rare variability and pathway analysis. Lastly, we used the UK Biobank data to perform a PheWas using individuals at the extremes of genetic risk for DLB. Findings: Between November 2018 and September 2022 we analyzed 8.6 million single nucleotide polymorphisms in 3293 DLB cases, 1826 LBD cases and 20,988 controls, as well as phenotypes from the UK Biobank dataset. Despite more than doubling the sample size from the previous GWAS in DLB, we did not identify significant loci in addition to those previously reported at GBA, SNCA, STX1B, and APOE. However, the sex-stratified analysis revealed that the GBA and SNCA signals are mainly driven by males, suggesting a sex-specific genetic architecture of disease. Using only clinical and neuropathologically diagnosed cases, we highlight four loci surpassing the significance threshold. Using the largest cohort of DLB we update our heritability estimates to 13% and fine map these results highlighting regions of the genome with high heritability but no genome-wide significant result so far. Interpretation: These data provide the most comprehensive analysis of genetic variability in DLB to date. The fact that no novel risk loci have been identified after doubling the cohort size indicates the potentially significant role of rare variants in the genetic architecture of DLB and stresses the urgent need for larger, well-characterized cohorts of this disease for genetic studies. The sex-stratified analysis shows that males and females have different signatures of genetic risk for DLB. These results have widespread implications for clinical practice and clinical trials’ design in DLB.

Elizabeth Gibbons, Arvid Rongve, Itziar de Rojas, Alexey Shadrin, Kaitlyn Westra, Allison Baumgartner, Levi Rosendall, Zachary Madaj, Dena G. Hernandez, Owen A. Ross, Valentina Escott-Price, Claire Shepherd, Laura Parkkinen, Sonja W. Scholz, Juan C. Troncoso, Olga Pletnikova, Ted Dawson, Liana Rosenthal, Olaf Ansorge,…Geir Selbæk…Jose Bras

Background:
The spread of the coronavirus in spring 2020 led to a lockdown of physical activity (PA) offers. The aim of this study was to investigate how PA, as well as general and mental health, in community-dwelling older adults were affected by the COVID-19 restrictions in Norway.

Methods:
Invitation to participate in the study was sent via Facebook and the Norwegian Pensioners’ Association. Inclusion criteria were being ≥ 65 years old and living at home. Participants completed a questionnaire either digitally or on paper in June–August 2020. The questionnaire included questions on PA, general health, and mental health both before (13th of March) and during lockdown.

Results:
We included 565 participants (mean age 74 ± 5.3 years, 60.4% female); almost 60% had a university degree, 84% reported performing PA more than once per week, and 20% reported a fall in the previous 12 months. The Wilcoxon signed-rank test indicated that the corona lockdown significantly reduced activity level (Z = -4.918, p < 0.001), general health (Z = -6,910, p < 0.001) and mental health (Z = -12.114, p < 0.001). Those who were less active during lockdown had higher odds of experiencing worse health than those who maintained their activity level, odds ratio: 9.36 (95% CI = 4.71–18.58, p < 0.001) for general health and 2.41 (95% CI = 1.52–3.83, p < 0.001) for mental health. Those who attended organized exercise offers before lockdown had higher odds of being less active during lockdown compared to those who did not exercise in an organized setting, odds ratio: 3.21 (95% CI = 2.17–5.76, p < 0.001).

Conclusion:
In a relatively highly educated and active group of older participants, COVID-19 restrictions still negatively affected level of activity as well as general and mental health. These short-term decreases in activity level and health suggest that preventive actions and increased focus on measures to support older adults in maintaining an active lifestyle are needed.

Arnhild J Nygård, Kristin Taraldsen, Randi Granbo, Geir Selbæk, Jorunn L Helbostad

Background:
Nursing home (NH) residents are in their last phase of life, and two aims of the NH’s medical care in Norway is to prevent unnecessary hospital admissions that would not benefit the resident and to facilitate a peaceful death in familiar surroundings when the time comes. However, little is known about the share of residents dying in NHs and the causes of death. We therefore evaluated the cause and place of death in a cohort of NH residents followed from the time of NH admission until death.

Methods:
NH residents were followed from admission to the NH and over the entire course of their NH stay. Demographic and clinical data were collected. Cause and place of death were retrieved from the Norwegian Cause of Death Registry.

Results:
Of 1283 residents, 6.2% died in hospital and 91.2% in a NH. Those who died in hospitals were more often male, died sooner after NH admission, had a less severe degree of dementia and had poorer general health. Dementia was the most common underlying cause of death, followed by cardiovascular disease.

Conclusions:
Dementia is one of the main causes of death in NH residents. In addition, our findings indicate a low number of inappropriate referrals to hospital during the last stage of life. However, further research should explore whether the terminal phase of NH residents is formed in accordance with their preferences and whether appropriate palliative care is offered.

Corinna Vossius, Sverre Bergh, Geir Selbæk, Bjørn Lichtwarck and Janne Myhre

Background: The kynurenine pathway (KP) has been identified as a potential mediator linking acute illness to cognitive dysfunction by generating neuroactive metabolites in response to inflammation. Delirium (acute confusion) is a common complication of acute illness and is associated with increased risk of dementia and mortality. However, the molecular mechanism underlying delirium, particularly in relation to the KP, remain elusive.

Methods: We undertook a multi-center observational study with 586 hospitalized patients (248 with delirium) and investigated associations between delirium and KP metabolites measured in cerebrospinal fluid (CSF) and serum by targeted metabolomics. We also explored associations between KP metabolites and markers of neuronal damage and one-year mortality.

Results: In delirium, we found concentrations of the neurotoxic metabolite quinolinic acid in CSF (CSF-QA, OR 2.26 [1.78, 2.87], p<0.001) to be increased, as well as increases in several other KP metabolites in serum and CSF. In addition, CSF-QA was associated with the neuronal damage marker neurofilament light chain (NfL, β 0.43, p<0.001) and was a strong predictor of one-year mortality (HR 4.35 [2.93, 6.45] for CSF-QA ≥ 100 nmol/L, p<0.001). The associations between CSF-QA and delirium, neuronal damage, and mortality remained highly significant following adjustment for confounders and multiple comparisons.

Conclusion: Our data identified how systemic inflammation, neurotoxicity, and delirium are strongly linked via the KP, and should inform future delirium prevention and treatment clinical trials that target enzymes of the KP.

Leiv Otto Watne, Christian Thomas Pollmann, Bjorn Erik Neerland, Else Quist-Paulsen, Nathalie Bodd Halaas, Ane-Victoria Idland, Bjørnar Hassel, Kristi Henjum, Anne-Brita Knapskog, Frede Frihagen, Johan Raeder, Aasmund Godø, Per Magne Ueland, Adrian McCann, Wender Figved, Geir Selbæk, Henrik Zetterberg, Evandro Fei Fang, Marius Myrstad, Lasse M Giil

Background:
The CERAD Word List Memory Test (WLMT) is widely used in the assessment of older adults with suspected dementia. Although normative data of the WLMT exist in many different regions of the world, normative data based on large population-based cohorts from the Scandinavian countries are lacking.
Objective: To develop normative data for the WLMT based on a large population-based Norwegian sample of healthy older adults aged 70 years and above, stratified by age, gender, and education.
Methods: A total of 6,356 older adults from two population-based studies in Norway, HUNT4 70 + and HUNT4 Trondheim 70+, were administered the WLMT. Only persons with normal cognitive function were included. We excluded persons with a diagnosis of mild cognitive impairment (MCI) and dementia, and persons with a history of stroke and/or depression. This resulted in 3,951 persons aged between 70 and 90 years, of whom 56.2% were females. Regression-based normative data were developed for this sample.
Results: Age, gender, and education were significant predictors of performance on the WLMT list-learning subtests and the delayed recall subtest, i.e., participants of younger age, female sex, and higher education level attained higher scores compared to participants of older age, male sex, and lower level of education.
Conclusion: Regression-based normative data from the WMLT, stratified by age, gender, and education from a large population-based Norwegian sample of cognitively healthy older adults aged 70 to 90 years are presented. An online norm calculator is available to facilitate scoring of the subtests (in percentiles and z-scores).

Jørgen Wagle, Geir Selbæk, Jratėaltytė Benth, Linda Gjøra, Thale Kinne Rønqvist, Peter Bekkhus-Wetterberg, Karin Persson, Knut Engedal