Forskningsartikler

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.

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

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.

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

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.

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

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.

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

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.

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

Abstract:

Objective: What are the core capabilities physiotherapists need to deliver quality care when working with people with dementia and their families/caregivers?

Design: A three-round modified e-Delphi study.

Participants: Panel members were physiotherapists experienced in working with people with dementia and/or educating and/or researching in the dementia field.

Methods: A steering group (16 international physiotherapists and a consumer) developed a draft framework including 129 core capabilities across 5 domains for panel members to rate their appropriateness for inclusion as a core capability to provide high quality care to people with dementia and their caregivers/families. The RAND/UCLA method was used to assess consensus.

Results: Thirty-five physiotherapists from 11 countries participated in Round 1, 31 (89%) in Round 2 and 28 (80% of Round 1) in Round 3. All core capabilities were rated appropriate for inclusion in each round. Panel members recommended wording refinements across the rounds and suggested 51 core capabilities for consideration. Three rounds were needed to reach consensus, resulting in 137 core capabilities rated appropriate for inclusion across 5 domains: 1) Knowledge and understanding, n = 36; 2) Assessment, n = 39; 3) Management, interventions and prevention n = 40; 4) Communication, therapeutic relationship and person-centred care, n = 17; and 5) Physiotherapists self-management and improvement, n = 5.

Conclusions: This e-Delphi study outlines the core capabilities physiotherapists need to provide high quality care to people with dementia and their families/caregivers. These core capabilities can be used by physiotherapists to help identify knowledge/skill gaps, as well as by educators to improve their training of undergraduate and postgraduate students, and clinicians.

Morag E Taylor, Karen Sverdrup, Julie Ries, Erik Rosendahl, Gro Gujord Tangen, Elisabeth Telenius, Katherine Lawler, Keith Hill, Annika Toots, Hans Hobbelen, Vanina Dal Bello-Haas, Abi Hall, Susan W Hunter, Victoria A Goodwin, Julie Whitney, Michele L Callisaya

Accepted: 08 Aug 2024. Provisionally accepted

Objective: The quality of the relationship between persons with dementia and family carers influences health and quality of life outcomes. Little is known regarding those at higher risk of experiencing a decline in relationship quality, who could potentially benefit the most from interventions. We aimed to identify these risk profiles and explore the underlying factors.

Methods: We applied a latent profile analysis to relationship quality data from a 1-year follow-up of 350 dyads of persons with dementia and their informal carers from the Actifcare cohort in eight European countries. Assessments included sociodemographic, clinical, functional, psychosocial and quality of life measures. Relationship quality was assessed with the Positive Affect Index. A discriminant analysis explored factors influencing the risk profiles.

Results: There were two relationship quality profiles among persons with dementia (gradually decreasing, 74.0%; low but improving, 24.6%) and two among carers (steadily poor, 57.7%; consistently positive, 42.3%). The ‘gradually decreasing’ profile (persons with dementia) was related to their levels of dependence and unmet needs, along with carers’ social distress and negative feelings, lower baseline RQ and sense of coherence. The ‘steadily poor’ profile (carers) was influenced by their social distress and negative feelings, lower sense of coherence and perceived social support. These two predominant profiles showed significant decreases in quality-of-life over one year.

Conclusions: Specific profiles of persons with dementia and their carers are at risk of worse relationship quality trajectories. By considering modifiable related factors (e.g., carers’ stress), our findings can help develop tailored, effective interventions.

Maria J. Marques, Bob Woods, Hannah Jelley, Liselot Kerpershoek, Louise Hopper, Kate Irving, Anja Bieber, Astrid Stephan, Anders Sköldunger, Britt‐Marie Sjölund, Geir Selbæk, Janne Røsvik, Orazio Zanetti, Daniel M. Portolani, João Marôco, Niels Janssen, Eva Y.L. Tan, Marjolein de Vugt, Frans Verhey og Manuel Gonçalves-Pereira

Abstract

Background: The Clock Drawing Test (CDT) is used to screen for Alzheimer’s disease and other dementia disorders. Normative scores on the version from the Montreal Cognitive Assessment (MoCA) do not exist in the Nordic countries.

Objective: To examine the normative scores of the CDT among adults aged 70 years and older.

Methods: We included 4,023 cognitively healthy persons aged 70-97 years from a population survey in Norway. They were examined with the CDT, which has a total score between zero and three. A multiple multinominal regression model was applied with a CDT score as the dependent categorical variable and estimated the probabilities of scoring a particular score, stratified by age, sex, and education. These probabilities correspond to an expected proportion of the normative population scoring at, or below a given percentile.

Results: None scored zero, 2.1% scored one, 14.9% scored two, and 83% scored three. Higher age, female sex and fewer years of schooling were associated with poorer performance. Scores of zero and one deviated from the normative score regardless of age, sex and education. A score of two was within the norm for a female older than 81 and a male older than 85.

Conclusions: The majority (83%) of people 70 years and older had a score of three on the CDT. Lower age, male sex, and higher education were associated with a better performance. Scores of zero and one were below the normative score. Except for the very old, a score of two was also well below the normative score.

Knut Engedal, Jūratė Šaltytė Benth, Jørgen Wagle, Linda Gjøra, Geir Selbæk, Karin Persson

Abstarct:

The cerebellum is linked to motor coordination, cognitive and affective processing, in addition to a wide range of clinical illnesses. To enable robust quantification of individual cerebellar anatomy relative to population norms, we mapped the normative development and aging of the cerebellum across the lifespan using brain scans of >54,000 participants. We estimated normative models at voxel-wise spatial precision, enabling integration with cerebellar atlases. Applying the normative models in independent samples revealed substantial heterogeneity within five clinical illnesses: autism spectrum disorder, mild cognitive impairment, Alzheimer disease, bipolar disorder, and schizophrenia. Notably, individuals with autism spectrum disorder and mild cognitive impairment exhibited increased positive and negative extreme deviations in cerebellar anatomy, while those with schizophrenia and Alzheimer disease showed predominantly negative deviations. Finally, extreme deviations were associated with cognitive scores. Our results provide a voxel-wise mapping of cerebellar anatomy across the human lifespan demonstrating the cerebellum’s nuanced role in different clinical illnesses.

Milin Kim, Esten Leonardsen, Saige Rutherford, Geir Selbæk, Karin Persson, Nils Eiel Steen, Olav B. Smeland, Torill Ueland, Geneviève Richard, Christian F. Beckmann, Andre F. Marquand, Ole A. Andreassen, Lars T. Westlye, Thomas Wolfers & Torgeir Moberget