Forskningsartikler

Abstract

Background: Pain is common among people living with dementia (PLWD) in the community and is associated with substantial negative consequences for both individuals and caregivers; however, knowledge regarding its prevalence and assessment in a community living population with dementia remains limited. The aim of this systematic review was to examine the prevalence of pain and the pain assessment inventories used among PLWD at home.

Method: This systematic review was registered in PROSPERO (CRD420251136436) and was conducted in accordance with the PRISMA 2020 statement. The searched databases include PubMed, MEDLINE, CINAHL, APA PsycInfo, AgeLine, the Cochrane Library, and Idunn, covering articles published from January 2000 to February 2026. Quantitative observational studies that reported pain through self-report questionnaires, staff- and/or caregiver- assessments were included to define the prevalence of pain in samples or subsamples of PLWD at home. The database search identified 1,296 records, of which 25 articles from 22 studies were included in the final review.

Results: Sample sizes ranged from 36 to 1,379 PLWD at home. Pain was reported as any pain occurring within a defined timeframe, pain present on the day of assessment, pain meeting predefined severity criteria, or pain interfering with daily activities. The prevalence of pain among PLWD at home was consistently high, with higher prevalence estimates reported in studies assessing any pain compared with those applying severity or consequence-based criteria. The prevalence of any pain during the past month was found to vary between 36 and 76%. Considerable methodological heterogeneity was observed in terms of pain definitions, assessment methods, and inclusion criteria, which makes comparisons across studies difficult.
Conclusion: The overall high prevalence of pain identified in this review underscores the need for systematic and standardized pain assessment for PLWD at home.

Anne-S. Helvik, Büşra Nur Temür, Sverre Bergh and Kjerstin Tevik

Abstract

Dementia care across Europe is characterized by substantial regional disparities in research participation, funding, and care practices, which challenge the development of equitable and inclusive research agendas. The PANEUCARE consortium adopted a pan-European, co-produced approach that integrates professional expertise with the perspectives of people living with dementia and caregivers to identify priorities for a more equitable dementia research landscape. Insights were generated through two workshops with dementia professionals and consultation groups involving people living with dementia and caregivers, followed by deliberative synthesis to explore common challenges, regional barriers, and shared research priorities. Participants highlighted persistent issues including workforce shortages, delayed diagnosis, fragmented care pathways, caregiver burden, and the underrepresentation of Southern and Eastern European contexts in research. At the same time, examples of local innovation, such as community-based services, cross-sector collaboration, and the use of digital tools, demonstrated context-specific resilience and opportunities for cross-regional learning. Priority areas for future research included strengthening cross-regional collaboration, addressing workforce development, improving culturally sensitive and post-diagnostic care, enhancing support for caregivers, and promoting more inclusive participation in research. These insights informed the development of the EQUITABLE framework (Equity, Quality, Urgency, Involvement, Transdisciplinary collaboration, Adaptability, Budget-consciousness, Linguistic and cultural sensitivity, and Engagement), which provides actionable guidance for designing inclusive and context-sensitive dementia research across Europe. By bringing together professional expertise and lived experience, PANEUCARE highlights how Europe’s diversity in dementia care can be leveraged as a resource for shared learning and policy development, supporting a more equitable, sustainable, and responsive European dementia research landscape.

Maria Isabel Cardona, Clarissa Giebel, Anthony Scerri, Anthea Innes, Ninoslav Mimica, Osman Kučuk, T. Rune Nielsen, Jūratė Macijauskienė, Carolien Smits, Carmel Geoghegan, Soraya Moradi-Bachiller, Anne Marie Rokstad, Iva Holmerova, Elżbieta Trypka, Ágnes Egervári, Raluca Sfetcu, Marija Taneska, Péter Hegedűs, Iryna Shevchenko, Svetlana Iloski, Thanos Chatzikostopoulos, Jochen René Thyrian

Abstract

Purpose: To describe intrinsic capacity (IC) distribution across age and sex and investigate its subdomains’ association with self-perceived health in home-dwelling older adults.

Methods: This cross-sectional study used population-based data from the Trøndelag Health Study (HUNT). Self-perceived health was assessed by a 4-point Likert scale and dichotomized into good or poor health. IC consists of five subdomains (vitality, locomotion, cognition, psychological, and sensory capacity), assessed in line with the WHO recommendations. Capacity in locomotion and cognition was assessed by the SPPB and MoCA, while the remaining subdomains were assessed through questionnaires. Associations between subdomains and self-perceived health were examined using simple and multiple regression models, adjusting for age and education.

Results: We included 8718 home-dwelling older adults (aged 70-101 years; 52.5% women). Good health was reported by 69.8% among those < 85 years and by 48.6% among those ≥ 85 years. High capacity in ≥ 3 subdomains was observed in 79.3% and 40.9% among individuals < 85 years and ≥ 85 years, respectively. High locomotor capacity showed the strongest association with good self-perceived health. The probability of poor self-perceived health increased with lower IC, but among women, significantly less by older age and more by higher education.

Conclusion: We observed a strong association between IC and self-perceived health, suggesting that IC is closely linked to individuals’ self-perceived health. Our findings support IC as a relevant tool in the shift toward preventive, health-promoting care, and we believe the use of IC can help tailor interventions to optimize functional ability and well-being.

Kjerstin Næss Melsæter, Turid Follestad, Gro Gujord Tangen, Beatrix Vereijken, Pernille Thingstad

Abstract:
Background: New knowledge about the process leading to crises among community-dwelling frail patients, such as acute hospital admissions, may contribute to improved understanding, prevention, and new approaches to future crises. The aim of this study was to explore the development of crises among frail patients as documented in the patient records by home care services and general practitioners.

Methods: This study comprised a qualitative process analysis of documents from electronic patient records systems retrieved from home care services and general practitioners in ten municipalities in Norway for 20 patients.

Findings: The analysis showed that the structure of the examined patient records influences the ability to disclose the processes leading to crises. Events within the crisis process were often described without addressing the underlying reasons for their occurrence. Furthermore, the development of a crisis was found to follow individual and complex pathways for each patient.

Janne Myhre, Sverre Bergh, Ingvild Hjorth Feiring, Lisbeth Dyrendal Høgset Lisbeth, Øyvind Kirkevold og Bjørn Lichtwarck

Abstract: 

Background: Idiopathic normal pressure hydrocephalus (iNPH) and Alzheimer’s disease (AD) are neurodegenerative disorders with partly overlapping clinical features. Since the treatment is different, we need better knowledge about how the cognitive profile differs between these conditions.

Objective: We aimed to compare the cognitive profile of iNPH patients with that of a large cohort of confirmed AD patients.

Methods: Patients diagnosed with iNPH and accepted for shunt surgery were compared with patients with biomarker verified Alzheimer’s disease in The Norwegian Register of Persons Assessed for Cognitive symptoms (NorCog). All patients underwent a standardized cognitive assessment with age and education adjusted z-scores. We used the Clinical Dementia Rating Scale (CDR) to adjust for disease severity. Since the cognitive score distributions were highly skewed, we used nonparametric analyses stratified by CDR stage combined with multinomial logistic regression.

Results: In total, 276 iNPH patients were compared to 1113 AD patients. iNPH patients performed significantly poorer on phonemic fluency [median z-score difference (AD-iNPH) 0.30, 95% confidence interval (CI) 0.20 to 0.50], but significantly better on other cognitive tests, in particular immediate (median difference -0.35, 95% CI -0.49 to -0.20) and delayed recall (median difference -0.46, 95% CI -0.59 to -0.34). The differences persisted after adjustment for CDR and were most pronounced in early stages of the disease.

Conclusions: iNPH seems to affect phonemic fluency more and memory less than AD. As the disease progresses, the cognitive profiles become more similar, and the conditions cannot be distinguished by cognitive tests.

Magnhild S Dejgaard, Per Kristian Eide, Gro Gujord Tangen, Eva Skovlund, Geir Selbæk, Torgeir Bruun Wyller

Abstract

Introduction: Most people with dementia in Norway live at home, and maintaining physical, social and spiritual activity remains a basic need. Yet research has focused on women as caregivers rather than women living with dementia. Consequently, more knowledge is needed into what women receiving home care service consider important in daily life to tailor health care services and to understand how these women experience participating in activities.

Objective: The aim of this study was to describe what women with dementia who receive home care service consider important in their daily lives.

Methods: This study employed an exploratory-descriptive design. Data were collected using individual semi-structured interviews with eight older women with dementia with mild to moderate cognitive impairment who received home care service. Data were analysed using manifest qualitative content analysis.

Results: The data analysis identified three categories: The need to be physically active and spend time outdoors, The need to staying socially connected and The need for meaningful activities.

Conclusion: This study provides insight into what women with dementia who receive home care service consider important in their daily lives. The need for meaning in daily life can be met in different ways, and it is important to tailor activities for women with dementia.

Simen A Steindal, Ingebjørg Haugen, Orla Brady, Knut Engedal, Benedicte Sørensen Strøm