The Journal of Prevention of Alzheimer’s Disease, 2025

Informal care for people with dementia in Europe

Abstract

Introduction
Informal care estimates for use in health-economic models are lacking. We aimed to estimate the association between informal care time and dementia symptoms across Europe.
Methods
A secondary analysis was performed on 13,529 observations in 5,369 persons from 9 European pooled cohort or trial studies in community-dwelling persons with dementia. A mixed regression model was fitted to time spent on instrumental or basic activities of daily living using disease severity and demographic characteristics.
Results
Daily informal care time was 0.5 hours higher in moderate compared to mild and 1.3h higher in severe compared to mild cognitive impairment. Likewise, this was 1.2h and 2.7h for functional disability and 0.3h and 0.6h for behavioral symptoms in the same directions.
Discussion
Estimates can be used in both single- and multi-domain health-economic models for dementia in European settings.

Forfattere

Ron Handels, Somboon Hataiyusuk, Anders Wimo, Anders Sköldunger, Christian Bakker, Anja Bieber, Alfonso Ciccone, Carlo Alberto Defanti, Andrea Fabbo, Sara Fascendini, Lutz Frölich, Chloé Gervès-Pinquié, Manuel Gonçalves-Pereira, Kate Irving, Raymond Koopmans, Patrizia Mecocci, Paola Merlo, Bernhard Michalowsky, Oliver Peters, Yolande Pijnenburg, Óscar Ribeiro, Geir Salbaek, Larissa Schwarzkopf, Hilde Verbeek, Marjolein de Vugt, Bob Woods, Orazio Zanetti, Bengt Winblad, Linus Jönsson; Actifcare consortium, ICTUS/DSA group, PLASA/DSA group, RECAGE consortium, RightTimePlaceCare consortium

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BMJ Open, 2025

Brain health in Norwegian female former top-level football players: a protocol for a longitudinal cohort study

Abstract

Abstract:
Introduction

Repetitive head impacts (RHI) in sports
may represent a risk factor for long-term
cognitive and neurological sequelae. Recent studies have identified an association between playing football at the top level and an elevated risk of cognitive impairment and neurodegenerative disease. However, these were conducted on men, and there is a knowledge gap
regarding these risks in female athletes. This study aims to investigate the effect of head impacts on brain health in female former top-level football players.

Methods and analysis This is a prospective cohort study, enroling female former football players and top-level athletes from sports without an inherent risk of RHI. All participants are born in 1980 or earlier. We plan to perform follow-up assessments at least three times over 20 years. The protocol includes neurocognitive assessments, self-reported
neurocognitive outcomes, neurological
examination, advanced brain MRI, and fluid biomarkers.
Ethics and dissemination
The study has been approved by the South-East Regional Ethics Committee
for Medical Research in Norway (2023/178330) and the Norwegian Agency for Shared Services in Education and
Research (SIKT). A Data Protection Impact Assessment was developed by the research group and approved by SIKT and the Norwegian School of Sport Sciences.
We will disseminate the results through peer-reviewed publications, academic conference presentations and webinars. We will communicate with the public and
key stakeholders in football worldwide to inform and promote the development and implementation of potential preventive measures based on our study findings.

Forfattere

Sara Christina Dahlén , John Bjørneboe, Stian Kirkerud Sandmo, Lena Bache-Mathisen, Peter Filipcik, Emilie Isager Howe, Einar August Høgestøl, Geir Selbæk , Truls Straume-Næsheim, Lars T Westlye, Roald Bahr & Thor Einar Andersen

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Patient Related Outcome Measures, 2025

“Time to Be Young?” – A Qualitative Study Exploring the Impact of Attending a Course for Young Carers Who Have a Parent with Dementia

Abstract

Abstract:

Purpose: Being a young carer of a parent with dementia can be challenging, with many carers undertaking various practical and caring tasks. The weekend course Time to be young? gathers young carers, aiming to support them to cope with their challenges in everyday life. The aim of this study was to explore their role as a caregiver and the experienced impact of the course on their strategies of coping in their everyday life.

Participants and Methods: The study had a qualitative descriptive design inspired by Lindseth and Norberg’s phenomenological hermeneutical method, using individual semi-structured interviews for data collection. The participants were recruited from former participants of the course Time to be young?, and the final sample included eight participants.
Results: Through the analysis, four main themes were identified: 1) Help to accept the situation, 2) A sense of community, 3) The need for information and 4) The need to live one’s own life. The study found that attendance at Time to be young? for young adults having a parent with dementia affected their coping strategies in their situation as a young care.
Conclusion: The study demonstrated the importance of courses like Time to be young?, and need for a meeting place, tailored information about dementia, and an opportunity to share and reflect upon their experiences as a young carer.

Forfattere

Celine Haaland-Johansen, Ingebjørg Haugen & Anne Marie Mork Rokstad

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European Urology Open Science, 2024

Physical Performance and Activity in Older Prostate Cancer Survivors in Comparison with Population-based Matched Controls

Abstract

Abstract:

Background and objective: Whether radical prostate cancer treatment affects long-term physical performance and physical activity in older men is not known. We aimed to compare physical performance and self-reported physical activity between relapse-free older prostate cancer survivors and population-based controls.

Methods: A single-centre, cross-sectional study including 109 men aged ≥70 yr receiving robotic-assisted radical prostatectomy (61.5%) or external beam radiotherapy (38.5%) between 2014 and 2018 was conducted. Population-based matched (age, gender, and education) controls (n = 327) were drawn from the Trøndelag Health Study. The primary (the Short Physical Performance Battery [SPPB] summary score) and secondary (gait speed, grip strength, one-legged balance, and the self-reported Physical Activity Index) outcomes were compared between survivors and controls by adjusted linear mixed models.

Key findings and limitations: The SPPB score, gait speed, and Physical Activity Index did not differ between survivors (mean age 78.3 yr, mean time since treatment 52.9 mo) and controls (mean age 78.2 yr). Survivors had slightly poorer grip strength (regression coefficient [RC] -5.81, p < 0.001, 95% confidence interval [CI] -7.46; -4.17) and one-legged balance (RC -4.36, p < 0.001, 95% CI -6.72; -2.00; adjusted models), but the clinical significance is uncertain. Small sample size and potential selection of the fittest survivors are limitations that may reduce the generalisability of our findings.

Conclusions and clinical implications: 3 to 8 yr after radical prostate cancer treatment, older men’s overall physical performance and physical activity level were comparable with those of matched controls. This suggests that the treatment had little impact on functional status.

Patient summary: In this study, we investigated physical function in older men several years after they had undergone curatively intended treatment for prostate cancer in comparison with men in a general population of the same age and education. We found that physical function was similar, except slightly poorer grip strength and balance on one leg in men treated for prostate cancer. We conclude that the overall physical function was comparable with that of the general population and believe that this indicates that prostate cancer treatment was well tolerated despite older age.

Forfattere

Reidun Sletten, Marit Slaaen, Line Merethe Oldervoll, Håvard Kjesbu Skjellegrind, Jūratė Šaltytė Benth, Lennart Åstrøm, Øyvind Kirkevold, Sverre Bergh, Bjørn Henning Grønberg, Siri Rostoft, Asta Bye, Paul Jarle Mork & Ola Berger Christiansen

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Journal of Affective Disorders, 2024

Sense of coherence, subjective burden, and anxiety and depression symptoms in caregivers of people with dementia: Causal dynamics unveiled by a longitudinal cohort study in Europe

Abstract

Online ahead of print.

Background: Sense of coherence (SOC) is a disposition to perceive things as comprehensible, manageable and meaningful. Lower SOC is associated with subjective burden and psychological morbidity in family caregivers, including in dementia. However, the evidence-base mainly comprises small-scale or cross-sectional studies. More should be known about SOC stability, causal relationships, and international contexts. We aimed to study longitudinal links between dementia caregivers’ SOC, subjective burden, and anxiety and depression symptoms in a multinational sample.

Methods: We analyzed the EU-Actifcare cohort (451 dyads of community-dwelling people with mild-moderate dementia and their caregivers). Caregivers’ assessments included: SOC scale, Relatives’ Stress Scale, Hospital Anxiety and Depression Scale. A cross-lagged panel model was used to investigate associations between these measures at baseline, 6 and 12-month follow-ups, controlling for covariates.

Results: Caregivers’ subjective burden, anxiety and depression symptoms increased over time, SOC remaining overall stable. Considering the first six-month follow-up, we found bidirectional relationships between SOC and subjective burden, and SOC and anxiety symptoms, while lower SOC predicted depression symptoms but not vice versa. For the remaining follow-up period, both anxiety and depression symptoms predicted lower SOC but not vice versa.

Limitations: Convenience sampling precludes full generalizability.

Conclusions: This large longitudinal study shed more light on interplays between SOC, subjective burden and mental health outcomes in dementia caregivers. Findings were consistent with SOC potential protective role against burden and psychological morbidity. However, they also supported reverse causality regarding part of the associations. Caregivers’ SOC levels may be directly influenced by subjective burden and psychological morbidity.

Forfattere

Manuel Gonçalves-Pereira, Maria J Marques, Regina F Alves, Hannah Jelley, Claire Wolfs, Gabriele Meyer, Anja Bieber, Kate Irving, Louise Hopper, Orazio Zanetti, Daniel M Portolani, Geir Selbaek, Janne Røsvik, Anders Sköldunger, Britt-Marie Sjölund, Marjolein de Vugt, Frans Verhey, Bob Woods

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medRxiv, 2024

Predicting Mental and Neurological Illnesses Based on Cerebellar Normative Features

Abstract

Preprint

Abstract:

Mental and neurological conditions have been linked to structural brain variations. However, aside from dementia, the value of brain structural characteristics derived from brain scans for prediction is relatively low. One reason for this limitation is the clinical and biological heterogeneity inherent to such conditions. Recent studies have implicated aberrations in the cerebellum, a relatively understudied brain region, in these clinical conditions. Here, we used machine learning to test the value of individual deviations from normative cerebellar development across the lifespan (based on trained data from >27k participants) for prediction of autism spectrum disorder (ASD) (n=317), bipolar disorder (BD) (n=238), schizophrenia (SZ) (n=195), mild cognitive impairment (MCI) (n=122), and Alzheimer’s disease (AD) (n=116). We applied several atlases and derived median, variance, and percentages of extreme deviations within each region of interest. Our results show that lobular and voxel-wise cerebellar data can be used to discriminate healthy controls from ASD and SZ with moderate accuracy (the area under the receiver operating characteristic curves ranged from 0.56 to 0.64), The strongest contributions to these predictive models were from posterior regions of the cerebellum, which are more strongly linked to higher cognitive functions than to motor control.

Forfattere

Milin Kim, Nitin Sharma, Esten H. Leonardsen, Saige Rutherford, Geir Selbæk, Karin Persson, Nils Eiel Steen, Olav B. Smeland, Torill Ueland, Geneviève Richard, Aikaterina Manoli, Sofie L. Valk, Dag Alnæs, Christian F. Beckman, Andre F. Marquand, Ole A. Andreassen, Lars T. Westlye, Thomas Wolfers, Torgeir Moberget

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Geriatrics, 2024

Falls in Persons with Cognitive Impairment—Incidence and Characteristics of the Fallers

Abstract

Background/Objectives: The annual incidence of falls is high in older adults with impaired cognitive function and dementia, and injuries have a detrimental effect on disability-adjusted life-years and public health spending. In this registry-based study, fall incidence and characteristics of the fallers were explored in a large population with cognitive impairment.
Methods: NorCog, “The Norwegian Registry of Persons Assessed for Cognitive Symptoms”, is a national research and quality registry with a biomaterial collection. This study included 9525 persons from the registry who had answered the question about falls. Fall incidence was studied, and the characteristics of fallers and non-fallers were compared.
Results: The annual fall incidence was 3774/9525 (39.6%). The incidence varied between types of dementia, from 22.4% in persons with the debut of Alzheimer’s disease before 65 years of age to 55.3% in persons with vascular dementia and with increasing degrees of cognitive impairment. A wide range of personal characteristics, symptoms, signs, laboratory tests, and physical, psychological, and cognitive tests differed between fallers and non-fallers, most in disfavour of the fallers. Age, reduced Personal Activities of Daily Living, reduced gait speed, delayed recall, use of a walking aid, and depression were independent predictors of falls.
Conclusions: Among cognitively impaired persons with a history of falls, frailty was an independent predictor of falls. Neither the type of dementia nor the degree of cognitive impairment were independent predictors of falls. Prevention of frailty by physical training and social activity may be important in mitigating fall risk among older adults with impaired cognition.

Forfattere

Per G. Farup, Knut Hestad and Knut Engedal

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Journal of the American Medical Directors Association, 2024

Clinical Predictors of Mortality in People With Severe Behavioral and Psychological Symptoms of Dementia

Abstract

Abstract

Objectives: Dementia significantly impacts quality of life, health care costs, and caregiver burden, being a leading cause of death among older adults. We investigated predictors of mortality in people with severe behavioral and psychological symptoms of dementia (BPSD).

Design: A multicentric longitudinal observational study was conducted, comprising clinical assessments at baseline and every 6 months for 3 years.

Setting and participants: People with severe BPSD (Neuropsychiatric Inventory, NPI ≥32) living at home.

Methods: Data on demographics and clinical characteristics were collected at baseline and during 6-monthly follow-ups over 3 years. The main outcome was mortality, documented over a total period of 4 years and analyzed using the Cox proportional hazards model.

Results: Of the 508 patients with dementia with severe BPSD, 165 (32.5%) died during the 4-year follow-up. Non-survivors were older (79.8 ± 7.7 vs 77.3 ± 8.0; P < .001), more likely to be male (58.8% vs 38.5%; P < .001), and had higher BPSD severity (NPI: 57.2 ± 20.2 vs 50.3 ± 17.9; P < .001), lower cognitive function according to the Mini-Mental State Examination (MMSE) (13.5 ± 6.6 vs 16.4 ± 5.9; P < .001), and worse functional status according to the Alzheimer’s Disease Cooperative Study – Activities of Daily Living Scale (ADCS) (28.8 ± 16.4 vs 36.3 ± 17.2; P < .001) at baseline. Significant predictors of mortality included male sex (hazard ratio [HR], 2.03; 95% confidence interval [95% CI], 1.46-2.82; P < .001), older age at diagnosis (HR, 1.05; 95% CI, 1.03-1.07; P < .001), higher NPI scores (HR, 1.01; 95% CI, 1.01-1.02; P = .002), lower MMSE (HR, 0.95; 95% CI, 0.93-0.98; P = .001), lower ADCS (HR, 0.98; 95% CI, 0.98-0.99; P = .015), and lower quality of life rated by proxy (HR, 0.97; 95% CI, 0.95-0.99; P = .021). The use of antidepressants (HR, 0.69; 95% CI, 0.48-0.98; P = .038) was associated with increased survival. Delusions (HR, 1.0; 95% CI, 1.03-1.12; P < .001), hallucinations (HR, 1.07; 95% CI, 1.02-1.11; P = .002), and agitation/aggression (HR, 1.05; 95% CI, 1.01-1.09; P = .021) were significantly linked to increased mortality.

Conclusions and implications: Older age, male sex, severe BPSD, and lower cognitive and quality of life scores significantly predict increased mortality in patients with severe BPSD.

Forfattere

Aline Mendes, François R Herrmann, Sverre Bergh, Bruno Mario Cesana, Ron Handels, Alfonso Ciccone, Emmanuel Cognat, Andrea Fabbo, Sara Fascendini, Giovanni B Frisoni, Lutz Froelich, Maria Cristina Jori, Patrizia Mecocci, Paola Merlo, Oliver Peters, Magdalini Tsolaki, Carlo Alberto Defanti

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Alzheimer's & Dementia, 2024

Associations between depression and anxiety in midlife and dementia more than 30 years later: The HUNT Study

Abstract

Abstract:
Introduction: It is unclear how midlife depression and anxiety affect dementia risk. We examined this in a Norwegian cohort followed for 30 years.

Methods: Dementia status at age 70+ in the fourth wave of the Trøndelag Health Study (HUNT4, 2017-2019, N = 9745) was linked with anxiety and depression from HUNT1 (1984-1985), HUNT2 (1995-1997), HUNT3 (2006-2008), and HUNT4. Longitudinal anxiety and depression score, and prevalence trajectories during 1984-2019 by dementia status at HUNT4 were fitted using mixed effects regression adjusting for age, sex, education, and lifestyle and health factors.

Results: Dementia at HUNT4 was associated with higher case prevalence at all waves, from 1.9 percentage points (pp) (95% CI: 0.1-3.7) higher at HUNT1 to 7.6 pp (95% CI: 5.7-9.6) higher at HUNT4.

Discussion: Our findings show that depression and anxiety was more common more than 30 years before dementia onset in those who later developed dementia.

Highlights: Older individuals with dementia had a higher prevalence of mixed anxiety- and depressive symptoms (A + D), both concurrently with and more than three decades prior to their dementia diagnosis. Older individuals with dementia had higher levels of anxiety, both concurrently and up to two decades prior to their dementia diagnosis. Depressive symptoms increased by time among those who developed dementia, but not among others. Results were similar for all cause dementia, Alzheimer’s disease, and other types of dementia; however, for vascular dementia, the difference was not significant until dementia was present.

Forfattere

Ragnhild Holmberg Aunsmo, Bjørn Heine Strand, Kaarin J. Anstey, Sverre Bergh, Mika Kivimäki, Sebastian Köhler, Steinar Krokstad, Gill Livingston, Fiona E. Matthews, Geir Selbæk

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