Forskningsartikler

Sammendrag
Bakgrunn: Nærmere 90 % av norske kommuner har et hukommelsesteam eller en ressursperson for demens, men det er lite kunnskap om innholdet i tjenestene og hvordan teamene ivaretar sine oppgaver.

Metode: Hensikten med studien var å undersøke og beskrive ansatte i hukommelsesteams erfaringer med organisering, rammefaktorer og ivaretagelse av oppgaver. Vi gjennomførte fire fokusgruppeintervjuer med 18 ansatte i hukommelsesteam fra ulike deler av landet. Intervjuene ble analysert i tråd med prinsipper for innholdsanalyse.

Hovedresultater: Deltagerne beskrev ingen sammenheng mellom kommunestørrelse og hukommelsesteametsstørrelse. De opplevde et stort sprik mellom behov og ressurser. Hukommelsesteamene trakk frem at samarbeidetmed fastlegen er svært viktig, men samarbeidet er sårbart, og mange kommuner mangler arenaer og systematikk for samarbeid. Mangel på kommunale planer og prioriteringer gjør at det er opp til teamene selv å prioritere de knappe ressursene de har.

Konklusjon: Resultatene fra studien indikerer et behov for at kommunene gir hukommelsesteamene en tydelig posisjon i organiseringen av tilbudet til personer med demens og deres familier. Det synes å være behov for økte ressurser, tydeligere retning for prioritering og kvalitet, samt tilrettelegging av arenaer for samarbeid internt i kommunene, spesielt med fastleger.

Siren Eriksen, Mona Michelet, Klaus Amundsen, Hege Askestad, Thea Cathrine Bredholt, Torunn Edøy, Knut Engedal, Marianne Lingner, Kjersti Løkken Aakerholm, Trude Irene Solberg & Anne Marie Mork Rokstad

Abstract

Clarissa Giebel, Rabih Chattat, Iva Holmerova, Louise Hopper, Jurate
Macijauskiene, Megan Rose Readman, Oscar Ribeiro, Anne Marie Rokstad,
Anthony Scerri, Dorota Szczesniak, Catherine Talbot, Jochen Rene Thyrian,
Lindsay Groenvynck, Marco Brigiano, Gill Windle & on behalf of the
INTERDEM Taskforce on Inequalities in Dementia

Sara E. Stinson, Alexey A. Shadrin, Zillur Rahman, Linn Rødevand, Iris J. Broce, Geir Selbæk, Hreinn Stefansson, Jan Haavik, Nadine Parker, Elise Koch, Oleksandr Frei, Kevin S. O’Connell, Olav B. Smeland, Srdjan Djurovic, Anders M. Dale, Dennis van der Meer, Ole A. Andreassen

Abstract

Objectives: This study explores how healthcare professionals in Norwegian municipal memory teams experience working as case managers for people with dementia and their informal caregivers, and the approaches they employ to fulfil this role.

Method: A qualitative descriptive design was employed, using focus groups with 18 case managers from a range of municipalities. Data were analysed using thematic content analysis.

Results: Three overarching themes emerged: (1) tailoring support, (2) being committed and available, and (3) contributing to cooperation and competence development. Participants described how they adapted services to individual needs throughout the dementia trajectory, drawing on both professional expertise and personal resources. While the role was experienced as meaningful, it was also described as demanding, involving high levels of personal involvement and vulnerability due to limited resources. Case managers also played a key role in competence development and multidisciplinary collaboration.

Conclusion: The case manager role facilitates flexible, person-centred support, and continuity of care. However, its effectiveness is highly dependent on individual commitment and is vulnerable to resource constraints. Strengthening structural and professional conditions is essential to ensure the delivery of high-quality dementia care.

Mona Michelet, Siren Eriksen, Kariann Krohne, Thea C Bredholt, Knut Engedal, Hege Askestad, Trude Solberg, Anne Marie Mork Rokstad

Abstract:

Background: Neuropsychiatric symptoms (NPS) are highly prevalent in nursing home residents. The main aims of this study were to examine whether music-based care (MBC) had sustained effects on NPS in nursing home residents with dementia and chronic pain and to describe the distribution of NPS.

Methods: A secondary analysis of a cluster-randomised controlled trial with intervention and control groups was performed. The 8-week MBC intervention included daily individualised prerecorded music integration. A large sample of nursing home residents with dementia and chronic pain in 12 nursing homes in Norway were screened for pain and dementia by experts and included in the study. The Neuropsychiatric Inventory Nursing Home Edition (NPI-NH) was completed for the residents at pre-test and after the 8-week MBC intervention. Descriptive statistics were used to characterise the sample, and multilevel mixed model analysis assessed the difference in change in NPI-NH scores before and after the intervention between the groups.

Results: The sample (n = 232) had a mean age of 86 years (SD 8.8), with 71% being female. Overall, 41%, 38% and 21% had severe, moderate or mild dementia, respectively, while 77% had moderate pain and 23% severe pain. Over two-thirds (68%) of the sample had at least one clinically important (≥ 4) NPI-NH symptom at pre-test, with mean NPI-NH total score of 19 (range 0–89). The most commonly identified NPI-NH subcategories were agitation (44%), affective symptoms (34%) and psychosis (25%) at pre-test. There was no significant difference in changes either comparing the NPI-NH total score (p = 0.396) (confidence interval: CI [–2.6 to 6.6]) between the intervention group (n = 108) and the control group (n = 124) or comparing any of the three NPI subcategories: psychosis (p = 0.203) (CI [–0.5 to 2.3]), agitation (p = 0.830) (CI [–2.3 to 1.8]) or affective symptoms (p = 0.447) (CI [–0.9 to 2.1]).

Conclusions: No statistically significant sustained effect of the MBC intervention on NPI symptoms was found among residents with dementia and chronic pain. Future studies should include measurement points closer to the intervention to evaluate short-term effects of MBC.

Martin Elstad Myrenget, Reidun Sandvik, Petter Borchgrevink, Geir Selbæk, Milada Småstuen, Vegar Rangul, Odd Håpnes, Audun Myskja, Bettina Husebø, Tone Rustøen

Abstarct

Objective: To evaluate and compare the predictive value of eight dementia risk scores for late-life cognitive function and cognitive decline; ANU-ADRI, CAIDE, CogDrisk, LIBRA, LIBRA2, UKBDRS(-APOE), and a Lancet commission-based risk score.

Methods: Using Norwegian Trøndelag Health Study (HUNT) data, we calculated risk scores from lifestyle and health data of 7221 dementia-free participants (mean age: 76.8 years, 54.1% female) collected in HUNT3 (2006–2008). Cognitive function was assessed using the Montreal Cognitive Assessment scale (MoCA) 11 years later in HUNT4 70+, and reassessed in 4716 participants 4 years thereafter. Associations between continuous risk scores or risk score tertiles, cognition and cognitive decline were examined using linear mixed-effects models. Logistic regression models were used to test associations between risk scores and a ≥ 3-point decline in MoCA scores.

Results: All risk scores were significantly associated with cognitive function and cognitive decline. Associations with cognitive function ranged from UKBDRS β per 1SD=-1.61(95%CI:-1.72,-1.51) to CAIDE (β=-0.74;95%CI:-0.82,-0.67), and with yearly cognitive decline from Lancet (β=-0.23;95%CI:-0.27,-0.18) to CAIDE (β=-0.04;95%CI:-0.07,-0.02). High-low risk group differences in cognitive function were largest for CogDrisk (β=-3.04;95%CI:-3.27,-2.81), LIBRA (β=-3.04;95%CI:-3.27,-2.80) and lowest for CAIDE (β=-1.65;95%CI:-1.86,-1.44). High-risk groups showed the steepest decline for UKBDRS-APOE (β=-0.43;95%CI:-0.52,-0.34), Lancet (β=-0.39;95%CI:-0.48,-0.30), and LIBRA (β=-0.38;95%CI:-0.47,-0.28). All scores predicted ≥3-point decline modestly: AUCs were highest for UKBDRS (AUC=0.61;95%CI:0.60,0.63), UKBDRS-APOE (0.61;95%CI:0.60,0.63), CogDrisk (0.60;95%CI:0.58,0.62), and Lancet (0.60;95%CI:0.58,0.61), but none outperformed a model including age and education alone (0.61;95%CI:0.60,0.63).

Conclusion: Risk scores captured meaningful gradients in cognition and decline but offered limited discriminatory accuracy beyond demographics, supporting their use for prevention-oriented risk profiling rather than prediction.

Josephine Stuebs, Geir Selbæk, Bjørn Heine Strand, Gill Livingston, Kaarin J. Anstey, Kay Deckers, Mika Kivimäki, Steinar Krokstad, Fiona E. Mathews & Ellen Melbye Langballe

Abstract

Background: Cardiovascular disease (CVD) risk factors are associated with the risk of cognitive decline and dementia. Composite CVD risk scores integrate multiple risk factors and may capture the cumulative burden of CVD risk relevant to cognitive outcomes. However, the long-term association between established CVD risk scores and subsequent dementia and mild cognitive impairment (MCI), and potential differences in these associations between males and females, remains insufficiently studied. This study examined the association between NORRISK 2, a CVD risk model estimating 10-year risk of fatal- and non-fatal CVD, and the presence of dementia and mild cognitive impairment (MCI) in males and females, after 22 years of follow-up.

Methods: Participants from The Trøndelag Health Study (HUNT), a longitudinal, population-based health study, were included. NORRISK 2 scores were based on data from HUNT2 (1995-1997). Cognitive status was assessed in the sub-study HUNT4 70+ (2017–2019) and categorized as cognitively unimpaired (CU), MCI, or dementia. We used multinomial logistic regression with NORRISK 2 as the predictor and cognitive status 22 years later as the main covariate.

Results: The study sample consisted of 6,971 participants (57.6% females, mean age at HUNT2 56.1 years). At HUNT4 70+, 14.0% of the participants had developed dementia, and 34.6% had developed MCI. Per one percent increase in NORRISK 2 score, the relative risk of developing dementia increased by 14% for males (relative risk ratio (RRR) = 1.14; 95% CI 1.12–1.17) and 28% for females (RRR = 1.28; 95% CI 1.25–1.31). The relative risk of developing MCI increased by 4% for men (RRR = 1.04; 95% CI 1.02–1.05) and 10% for women (RRR = 1.10; 95% CI 1.08–1.12).

Conclusion: A higher NORRISK 2 score was associated with an increased risk of dementia and MCI in both males and females, with the strongest associations observed in females.

Silje Kleven, Linda Ernstsen, Marte Kvello-Alme, Stian Lydersen, Geir Selbæk, Rannveig Sakshaug Eldholm

Abstract

Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults-many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues-and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population.Lay AbstractAutistic adults who develop dementia often experience challenges that are not well addressed by current dementia care systems. After a dementia diagnosis, people may need help with memory, communication, behavior changes, and daily living. For autistic adults, these supports must be adapted to their individual sensory sensitivities, communication styles, and social differences. This article reports on the work of an international group of researchers, clinicians, and advocates who met during the Second International Summit on Intellectual Disability and Dementia. The group examined how post-diagnostic support for autistic adults with dementia could be improved. They reviewed existing evidence, identified key barriers to care, and proposed strategies to strengthen services in areas such as medication use, environmental design, caregiver training, and personalized care planning. The report emphasizes that many autistic adults also have intellectual disabilities, mental health conditions, or long-term physical health issues, which can make care more complex. Current dementia care frameworks often overlook these overlapping needs, resulting in limited or unsuitable supports. The authors call for more research, workforce training, and autism-informed policy changes to ensure that post-diagnostic care is equitable, individualized, and responsive. Enhancing understanding and adapting support can help autistic adults with dementia maintain dignity, comfort, and quality of life.

Matthew P Janicki, Philip McCallion, Nancy Jokinen, Frode Kibsgaard Larsen, Dawna T Mughal, Kathryn P Service, Tiziano Gomiero, Christina N Marsack-Topolewski, Karen Watchman, Flavia H Santos, Seth M Keller, Shahin Shooshtari, Anupam Thakur, Vikram Palanisamy

Abstract:

Purpose: To document use and impact of potentially inappropriate medications on two-year progression of dementia in individuals with cognitive declines.

Methods: A retrospective study of 397 patients with Mild Cognitive Impairment (MCI) or dementia diagnosed and followed-up in outpatient memory clinics in Norway during 2009 − 18. Beers (2019)- and STOPP-2 criteria were used to identify Potentially Inappropriate Medications (PIMcogs) in individuals with cognitive impairments at baseline and two-year-follow-up. PIMcog use in terms of dementia severity, cognitive function, and neuropsychiatric and depressive symptoms were analyzed in regression models.

Results: The prevalence of PIMcogs increased from 16% at baseline to 23% at follow-up. PIMcog users were more likely to be women (63.5%), and they used more drugs, with a median of 5 drugs at baseline and 4 drugs at follow-up, compared to non-users who had a median of 3 used drugs at both time points. PIMcog users had higher median Neuropsychiatric Inventory severity sum scores (6 [3.0–11.0] versus 4.0 [2.0–7.0]) and median Cornell Scale for Depression in Dementia scores (6.5 [3.0–11.0] versus 4.0 [1.0–7.0]) compared to non-users at follow-up (p ≤ 0.002). PIMcog users exhibited more severe dementia, with a Clinical Dementia Rate-Sum of Boxes (CDR-SB) score of 7.0 (4.0–13.0) compared to 6.0 (3.5–10.0) in non-users. The median annual increase in CDR-SB was one unit, and PIMcog use at follow-up was significantly associated with more rapid progression of dementia severity.

Conclusion: Faster dementia progression was documented among PIMcog users although, the prevalence of PIMcogs was generally low in Norwegian memory clinic patients with cognitive impairments.

Hege Kersten, Maria L. Barca, Rannveig Sakshaug Eldholm, Karin Persson, Lara Thomasgaard, Keson Jaioun, Ingvild Saltvedt, Geir Selbæk & Knut Engedal