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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