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Objectives: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia., Methods: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates., Results: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 ( p  < 0.001), 0.76 ( p  < 0.001) and 0.78 ( p  = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p  = 0.007) and at six months follow-up (mean 0.31 points, p  = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 ( p  = 0.033), 0.67 ( p  < 0.001) and 0.91 ( p  < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p  = 0.005) and at six months (mean 0.35 points, p  = 0.002) follow-up., Conclusion: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services., Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion., Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access . Coordination and flexibility in setting and type of services were among the Recommendations to enhance use . Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly ., Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Objectives: This exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles., Design: A longitudinal international cohort study., Setting and Participants: The baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis., Methods: A latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles., Results: Four distinct need profiles were identified through latent class analysis. These comprised a "no need" profile (41% of the sample), a "met psychological needs" profile (25%), a "met social needs" profile (19%), and an "unmet social needs" profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the "unmet social needs" profile., Conclusions and Implications: In this large European sample, there was a subgroup of persons with dementia with high "unmet social needs" whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The aim of this study was to describe patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare and to examine factors associated with depression. Design: This was an observational study. Setting: Fourteen outpatient clinics and 33 general practitioners and municipality memory teams across Norway. Subjects: A total of 226 patients assessed in primary healthcare and 1595 patients assessed in specialist healthcare outpatient clinics. Main outcome measures: Cornell scale for depression in dementia (CSDD), Mini-Mental Status Examination (MMSE), Clock drawing test, Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Instrumental Activities of Daily Living, Personal Self-Maintenance Scale, Relatives' stress scale (RSS), and Neuropsychiatric Inventory Questionnaire (NPI-Q) Results: Patients assessed in primary healthcare were older (mean age 81.3 vs 73.0 years), less educated, had poorer cognition (MMSE median 22 vs 25), more limitations in activities of daily living (ADL), more behavioural and psychological symptoms of dementia (BPSD), more depressive symptoms (CSDD median 7 vs 5), more often lived alone (60% vs 41%) and were more often diagnosed with dementia (86% vs 47%) compared to patients diagnosed in specialist healthcare. Depression was associated with female gender, older age, more severe decline in cognitive functioning (IQCODE, OR 1.65), higher caregiver burden (RSS, OR 1.10) and with being assessed in primary healthcare (OR 1.53). Conclusion: Post-diagnostic support tailored to patients diagnosed with dementia in primary healthcare should consider their poor cognitive function and limitations in ADL and that these people often live alone, have BPSD and depression.Key pointsPeople diagnosed in Norwegian primary healthcare had more needs than people diagnosed in specialist healthcare.  • They were older, less educated, had poorer cognitive functioning and activity limitations, more often lived alone, and had more BPSD and depression.  • Depression was associated with being female, older, having cognitive decline, being assessed in primary care and the caregiver experiencing burden  • Post diagnostic support for people with dementia should be tailored to the individual's symptoms and needs.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development. Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up. Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor. Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.

Objectives: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access., Methods: A total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks., Results: The most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender., Conclusion: The Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care., (© 2019 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Background/aims: A timely diagnosis of dementia is important, and the Cognitive Function Instrument (CFI) is a newly developed instrument to screen for cognitive decline. The aim of this study was to evaluate the validity and internal consistency of the Norwegian version of the CFI., Methods: We included 265 participants with dementia, mild cognitive impairment (MCI), subjective cognitive impairment (SCI), and a reference group without subjective or assessed cognitive decline. The participants and their relatives answered the self- and proxy-rated versions of the CFI., Results: The Norwegian CFI had power to discriminate between people with dementia and with MCI, SCI, and the reference group. The proxy version had better power than the self-rated version in our participants (area under the curve [AUC] proxy-rated varying from 0.79 to 0.99, AUC self-rated varying from 0.56 to 0.85)., Conclusion: The Norwegian CFI was found to be a useful, valid, and robust instrument., (© 2018 S. Karger AG, Basel.)

Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care., Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs., Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression., Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL., Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.