Umbrella review and Delphi study on modifiable factors for dementia risk reduction.

A 2013 systematic review and Delphi consensus study identified 12 modifiable risk and protective factors for dementia, which were subsequently merged into the "LIfestyle for BRAin health" (LIBRA) score. We systematically evaluated whether LIBRA requires revision based on new evidence. To identify modifiable risk and protective factors suitable for dementia risk reduction, we combined an umbrella review of systematic reviews and meta-analyses with a two-round Delphi consensus study. The review of 608 unique primary studies and opinions of 18 experts prioritized six modifiable factors: hearing impairment, social contact, sleep, life course inequalities, atrial fibrillation, and psychological stress. Based on expert ranking, hearing impairment, social contact, and sleep were considered the most suitable candidates for inclusion in updated dementia risk scores. As such, the current study shows that dementia risk scores need systematic updates based on emerging evidence. Future studies will validate the updated LIBRA score in different cohorts. HIGHLIGHTS: An umbrella review was combined with opinions of 18 dementia experts. Various candidate targets for dementia risk reduction were identified. Experts prioritized hearing impairment, social contact, and sleep. Re-assessment of dementia risk scores is encouraged. Future work should evaluate the predictive validity of updated risk scores.

Dementia and mild cognitive impairment in older people in Trøndelag. / Demens og mild kognitiv svikt hos eldre personer i Trøndelag.

BACKGROUND: The number of people with dementia is expected to triple by 2050. We present figures showing the prevalence of dementia and mild cognitive impairment in Trondheim, and show how weighting for non-response and nursing home residency affects these figures when comparing Trondheim with Nord-Trøndelag. MATERIAL AND METHOD: In the fourth data collection in the Trøndelag Health Study (HUNT4) in the Norwegian county of Trøndelag, people aged 70 and over in Trondheim were invited to participate in HUNT4 Trondheim 70+. The participants were interviewed and underwent cognitive testing. A diagnostic team diagnosed dementia and mild cognitive impairment. Weights adjusting for non-response bias were used in the comparison of Trondheim and Nord-Trøndelag. RESULTS: The prevalence of dementia in Trondheim was estimated at 16.2 % for the age group 70 years and over, after weighting for non-response bias with regard to age, sex, education and proportion of nursing home residents. Unadjusted dementia prevalence was 21.0 % in Trondheim and 15.7 % in Nord-Trøndelag. After weighting, the prevalence was almost identical in the two samples. INTERPRETATION: Weighting for non-response is crucial for obtaining representative figures in prevalence studies of dementia.

Hippocampal Atrophy Subtypes of Alzheimer's Disease Using Automatic MRI in a Memory Clinic Cohort: Clinical Implications.

INTRODUCTION: One pathological hallmark of Alzheimer's disease (AD) is atrophy of medial temporal brain regions that can be visualized on magnetic resonance imaging (MRI), but not all patients will have atrophy. The aim was to use MRI to categorize patients according to their hippocampal atrophy status and to present prevalence of the subtypes, difference in clinical symptomatology and progression, and factors associated with hippocampal subtypes. METHODS: We included 215 patients with AD who had been assessed with the clinically available MRI software NeuroQuant (NQ; CorTechs labs/University of California, San Diego, CA, USA). NQ measures the hippocampus volume and calculates a normative percentile. Atrophy was regarded to be present if the percentile was ≤5. Demographics, cognitive measurements, AD phenotypes, apolipoprotein E status, and results from cerebrospinal fluid and amyloid positron emission tomography analyses were included as explanatory variables of the hippocampal subtypes. RESULTS: Of all, 60% had no hippocampal atrophy. These patients were younger and less cognitively impaired concerning global measures, memory function, and abstraction but impaired concerning executive, visuospatial, and semantic fluency, and more of them had nonamnestic AD, compared to those with hippocampal atrophy. No difference in progression rate was observed between the two groups. In mild cognitive impairment patients, amyloid pathology was associated with the no hippocampal atrophy group. CONCLUSION: The results have clinical implications. Clinicians should be aware of the large proportion of AD patients presenting without atrophy of the hippocampus as measured with this clinical MRI method in the diagnostic set up and that nonamnestic phenotypes are more common in this group as compared to those with atrophy. Furthermore, the findings are relevant in clinical trials.

Lifeworld perspectives of people with dementia: a meta-aggregation of qualitative studies.

OBJECTIVES: This meta-aggregation aims to interpret and synthesize present knowledge on the lifeworld perspectives of people with dementia and develop a model for guidance in clinical practice. METHOD: The data consist of four meta-syntheses describing different lifeworld perspectives in accordance with van Manen's existentials: lived relations, lived space, lived time and lived body. The meta-aggregation summarizes a range of views expressed by people with dementia in qualitative, interview-based studies, with the aim of generating a reliable model based on the studies' findings. RESULTS: In total, 88 studies among 1,191 persons with dementia were included. Sixteen areas of focus were found, representing four perspectives: (a) lived relations, consisting of connectedness, independence, equality and competence; (b) lived space, consisting of belonging, meaningfulness, safety and security, and autonomy; (c) lived time, consisting of being rooted in the past, being in the present, viewing the future and being in process; and (d) lived body, consisting of being functional, trustworthy, adaptable and presentable. A model shaped as a tree trunk captures the lifeworld perspectives of people with dementia. CONCLUSION: Sixteen areas were revealed from this meta-aggregation and form the basis of a model. This model may be used as a guide for health care personnel to ensure the overall lifeworld-perspectives of people with dementia in care for the target group and conduct lifeworld-preserving care with a person-centred approach.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

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.

Control Beliefs among People with Dementia: A Systematic Review.

INTRODUCTION: Dementia diseases are still incurable, and in order to assist in living well with the disease, researchers are increasing their attention to the value of control beliefs. Control beliefs are associated with coping and psychological well-being; however, knowledge on how they relate to well-being outcomes in people with dementia is limited. This review aimed to synthesize knowledge about control beliefs in this group to guide future interventions and research. METHOD: A systematic search of 6 databases (MEDLINE, CINAHL, PsychINFO, AgeLine, Embase, and the Cochrane Library) with broad search terms related to dementia, control, and coping was conducted. Studies that investigated people with a confirmed dementia diagnosis and that used a questionnaire to measure control beliefs quantitatively were included. RESULTS: Eighteen studies were identified, examining self-efficacy, personal control/mastery, or locus of control. The studies varied in aim and design, with fair to good methodological quality. However, 10 studies included <50 participants with dementia, leaving findings unreliable due to low power. Participants with dementia in the mild to moderate stages were included, with average age in the seventies. Except for one validation study, the control belief questionnaires had not been validated for people with dementia. CONCLUSION: There is a lack of knowledge about control beliefs among people with dementia, due to few and low-powered studies. Although we cannot conclude regarding control beliefs, our findings support the feasibility of quantitative research on control beliefs among people with dementia and we recommend that they be included in this type of research.

Locus of Control and Its Associations with Depressive Symptoms amongst People with Dementia.

INTRODUCTION: Depression is common amongst people with dementia. This study examines whether locus of control (LoC), a perceived control construct influential in the coping process, is related to depressive symptoms in this population. METHODS: In this prospective observational study, 257 community-dwelling older adults with a confirmed dementia diagnosis were included. At baseline, measures of depressive symptoms, LoC, cognition, independent functional ability, general health, dementia severity, and dementia disease insight were collected. At follow-up, measures of depressive symptoms and cognition were collected. Multiple linear regression using degree of depressive symptoms as measured with Montgomery-Asberg Depression Rating Scale as a dependent variable was applied to assess whether LoC was associated with depressive symptoms at baseline and follow-up while controlling for covariates. RESULTS: LoC (p < 0.001), general health (p = 0.003), and insight (p = 0.010) were associated with severity of depressive symptoms at baseline, accounting for 28% of the variance. LoC (p = 0.025) and depressive symptoms (p < 0.001) at baseline were associated with severity of depressive symptoms at follow-up, accounting for 56.3% of the variance. CONCLUSION: LoC was significantly associated with severity of depressive symptoms in people with dementia at baseline and at follow-up. Attention to LoC may be valuable for our understanding of depression in people with dementia, and interventions targeting depression could benefit from including a focus on internalizing perceived control. However, these findings are novel, and more research is needed.

Sex Differences on Montreal Cognitive Assessment and Mini-Mental State Examination Scores and the Value of Self-Report of Memory Problems among Community Dwelling People 70 Years and above: The HUNT Study.

INTRODUCTION: The aims were to examine if the total and item scores on the Montreal Cognitive Assessment (MoCA) and the Mini-Mental State Examination (MMSE) and self-reported memory problems differed between older women and men, and if self-reported memory problems were associated with scores on the 2 tests. METHODS: We included 309 home-dwelling people aged 70 years and older, 155 women, mean age 75.6 (SD 4.1) years, and 154 men, mean age 76.0 (SD 4.6) years. They were examined with MoCA and MMSE, and they answered 2 questions: "have you experienced any memory problems" and "have you experienced significant memory problems the last 5 years?" RESULTS: The participants scored significantly higher on the MMSE (women 28.0 [1.8], men 28.4 [1.4]) than on MoCA (women 24.6 [3.3], men 24.3 [3.1]). Spearman's rho was 0.36 between the tests. Women scored significantly higher than men on delayed recall of MoCA (3.0 [1.6] vs. 2.4 [1.6]), whereas men scored significantly higher on visuoconstruction (3.8 [1.2] vs. 3.5 [1.0]) and serial subtraction on MoCA (2.7 [0.6] vs. 2.5 [0.8]) and serial sevens on MMSE (4.5 [0.8] vs. 4.1 [1.1]). Multivariate linear regression analyses revealed that female sex, younger age, and higher education were associated with a higher score on MoCA, whereas age and education were associated with a higher score on MMSE. About half of the participants (no sex difference) had experienced significant memory problems the last 5 years, and they had significantly lower scores on both tests. CONCLUSIONS: The MoCA score was associated with sex, age, and education, whereas sex did not influence the MMSE score. The question "have you experienced significant memory problems the last 5 years?" may be useful to evaluate older people's cognition.

Young- and Late-Onset Dementia: A Comparative Study of Quality of Life, Burden, and Depressive Symptoms in Caregivers.

OBJECTIVE: To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD). METHODS: Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers' quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed. RESULTS: A significant difference was found in caregivers' burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers' quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers' perspective of quality of life of care recipient and caregivers' hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers' burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers' burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers' depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers' depressive symptoms in both the groups. CONCLUSION: Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.

Neuropsychiatric symptoms and comorbidity: Associations with dementia progression rate in a memory clinic cohort.

OBJECTIVES: Neuropsychiatric symptoms (NPS) are associated with dementia severity and progression rate. NPS clusters have different neurobiological underpinnings; therefore, their effect on dementia progression may differ. Furthermore, little is known about whether individual comorbidities affect progression rate. We investigated the effect of NPS clusters and individual comorbidities on dementia progression. METHODS: A memory clinic cohort with all-cause dementia (N = 442) was followed for up to 3 years from diagnosis. Previously, we found trajectory groups of dementia progression in this cohort: one with slow progression and two with rapid progression. In the present study, using principal component analysis, three symptom clusters of NPS were identified on the Neuropsychiatric Inventory Questionnaire (NPI-Q): agitation, affective and psychosis symptom clusters. Data regarding comorbidity were collected by linkage to the Norwegian Patient Registry. Multinomial logistic regression was applied to explore the association between NPS clusters and comorbidity with trajectory-group membership. RESULTS: Adjusted for demographics, dementia aetiology, comorbidity and cognition, we found that, at the time of dementia diagnosis, for every point within the psychosis symptom cluster of the NPI-Q, the risk of rapid progression increased by 53%; for every point within the affective symptom cluster, the risk of rapid progression increased by 29%. A previous diagnosis of mental and behavioural disorders (excluding dementia) decreased the risk of rapid dementia progression by 65%. CONCLUSIONS: Psychosis and affective symptom clusters at the time of diagnosis were associated with rapid progression of dementia. Previous diagnoses of mental and behavioural disorders (excluding dementia) were associated with slow progression.

Trajectories and risk factors of dementia progression: a memory clinic cohort followed up to 3 years from diagnosis.

OBJECTIVES: Patients with dementia follow different trajectories of progression. We aimed to investigate which factors at the time of diagnosis could predict trajectory group membership. DESIGN: Longitudinal observational study. SETTING: Specialized memory clinic, Oslo University Hospital in Norway. PARTICIPANTS: Patients assessed at the memory clinic, between 12 January 2009 and 31 July 2016, who were registered in the Norwegian Registry of persons assessed for cognitive symptoms (NorCog) and diagnosed with dementia after the baseline examination period (n = 442). The patients were followed up to 3 years, with an average of 3.5 examinations. MEASUREMENTS: Clinical Dementia Rating Scale Sum of Boxes (CDR-SB), Mini-Mental State Examination (MMSE), the Consortium to Establish a Registry of Alzheimer's disease (CERAD) 10-item word list delayed recall, the Clock Drawing Test, (CDT) Trail Making Test A (TMT-A), and Neuropsychiatric Inventory Questionnaire (NPI-Q). Based on changes in scores on the CDR-SB, we used group-based trajectory modeling (GBTM) to explore the presence of trajectory groups. Multinomial logistic regression was used to explore whether a set of baseline variables could predict trajectory group membership. RESULTS: Three trajectory groups were identified, one with a slow progression rate and two with more-rapid progression. Rapid progression was associated with older age, lower cognitive function (MMSE and TMT-A), and more-pronounced neuropsychiatric symptoms (NPI-Q) at the time of diagnosis. CONCLUSIONS: Our findings demonstrate the heterogeneity of dementia progression and describe risk factors for rapid progression, emphasizing the need for individual follow-up regimes. For future intervention studies, our results may guide the selection of patients.

Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project.

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.

Ethical aspects in dementia care - The use of psychosocial interventions.

The use of psychosocial interventions for people with dementia is common and recommended because they focus on the underlying problem and well-being of the person. The promotion of well-being is a relevant dimension in person-centred care, where the aim is to confirm the person's 'personhood'. Most literature about ethics in dementia care instructs us on how and when to include people with dementia in our research. Little is written about the ethical aspects regarding the use of psychosocial interventions in daily care. In clinical practise, several challenges arise about the use of psychosocial interventions. Those include questions about the person's ability to participate in decision-making and how we know what is best for them. Furthermore, we must consider what kinds of psychosocial interventions are best for everybody, or if intervention causes discomfort for the person. This article emphasizes the necessity to consider the ethical aspects of the implementation of psychosocial interventions while taking into consideration the persons individual needs. A particular ethical challenge arises when a person with dementia is unable to express themselves verbally. Therefore, it is essential that the staff know the history and preferences of each person with dementia. The ethical aspects of psychosocial interventions for people with dementia will be discussed using Beauchamp and Childress four ethical principles: respect for autonomy, beneficence, non-maleficence and justice. The person-centred approach proposed by Kitwood's and Brooker.

Alzheimer's disease ­ diagnosis and treatment. / Alzheimers sykdom ­ diagnostikk og behandling.

Alzheimer's disease is the most common cause of dementia globally. Its prevalence will increase considerably in the years to come, in pace with the increasing proportion of older people. No disease-modifying treatment is currently available. Measures to mitigate risk in mid-life may potentially prevent or postpone up to 40 % of dementia cases at group level.

The Power of EEG to Predict Conversion from Mild Cognitive Impairment and Subjective Cognitive Decline to Dementia.

INTRODUCTION: The aim of this study was to examine if quantitative electroencephalography (qEEG) using the statistical pattern recognition (SPR) method could predict conversion to dementia in patients with subjective cognitive decline (SCD) and mild cognitive impairment (MCI). METHODS: From 5 Nordic memory clinics, we included 47 SCD patients, 99 MCI patients, and 67 healthy controls. EEGs analyzed with the SPR method together with clinical data recorded at baseline were evaluated. The patients were followed up for a mean of 62.5 (SD 17.6) months and reexamined. RESULTS: Of 200 participants with valid clinical information, 70 had converted to dementia, and 52 had developed Alzheimer's disease. Receiver-operating characteristic analysis of the EEG results as defined by a dementia index (DI) ranging from 0 to 100 revealed that the area under the curve was 0.78 (95% CI 0.70-0.85), corresponding to a sensitivity of 71%, specificity of 69%, and accuracy of 69%. A logistic regression analysis showed that by adding results of a cognitive test at baseline to the EEG DI, accuracy could improve. CONCLUSION: We conclude that applying qEEG using the automated SPR method can be helpful in identifying patients with SCD and MCI that have a high risk of converting to dementia over a 5-year period. As the discriminant power of the method is of moderate degree, it should be used in addition to routine diagnostic methods.

The Association Between Circulating Inflammatory Markers and the Progression of Alzheimer Disease in Norwegian Memory Clinic Patients With Mild Cognitive Impairment or Dementia.

OBJECTIVE: Neuroinflammation may play an important role in the pathogenesis and progression of Alzheimer disease (AD). The aim of the present study was to detect whether increased inflammatory activity at baseline could predict cognitive and functional decline in patients with amnestic mild cognitive impairment (aMCI) or AD dementia after 2 years. METHODS: Serum samples from 242 memory clinic patients with an aMCI (n=88) or AD dementia (n=154) were analyzed for C-reactive protein and for 14 other inflammatory markers [interleukin (IL)-1ß, interleukin-1 receptor antagonist, IL-6, IL-10, IL-12p40, IL-17a, IL-18, IL-22, IL-33, tumor necrosis factor, cluster of differentiation 40 ligand, interferon-γ, chemokine ligand (CCL) 2, and CCL4] by bead-based multiplex immunoassay. Disease progression was measured by the annual increase in the Clinical Dementia Rating Scale Sum of Boxes (CDR-SB) and annual decrease in the score on the Mini-Mental State Examination (MMSE). RESULTS: No association between increased levels of the inflammatory markers and change on the CDR-SB or MMSE score was found, but there was a significant difference in baseline IL-6 and interleukin-1 receptor antagonist levels between aMCI and AD dementia groups. CONCLUSION: Increased levels of inflammatory markers were not associated with faster progression as measured by the annual change on the CDR-SB or MMSE score.

Is Strength Training as Effective as Aerobic Training for Depression in Older Adults? A Randomized Controlled Trial.

BACKGROUND: This study aimed to compare the effects of aerobic training (AT), strength training (ST) and low-intensity exercise in a control group (CG) as adjunct treatments to pharmacotherapy for major depressive disorder (MDD) in older persons. METHODS: Older persons clinically diagnosed with MDD (n = 27) and treated with antidepressants were blindly randomized into three groups: AT, ST and a CG. All patients were evaluated prior to and 12 weeks after the intervention. RESULTS: Compared with the CG, the AT and ST groups showed significant reductions in depressive symptoms (treatment -response = 50% decrease in the pre- to postintervention assessment) through the Hamilton Depression Rating Scale (AT group: χ2, p = 0.044) and Beck Depression Inventory (ST group: χ2, p = 0.044). CONCLUSION: Adding AT or ST with moderate intensity to the usual treatment promoted a greater reduction of MDD symptoms.

Variation between nursing homes in drug use and in drug-related problems.

BACKGROUND: Residents at nursing homes (NHs) are at particular risk for drug related harm. Regular medication reviews using explicit criteria for pharmacological inappropriateness and classification of drug related problems (DRPs) have recently been introduced as measures to improve the quality of medication use and for making the treatment more uniform across different institutions. Knowledge about variation in DRPs between NHs is scarce. To explore if increased attention towards more appropriate drug treatment in NHs have led to more uniform treatment, we have analyzed variations between different nursing homes' drug use and DRPs. METHODS: Cross-sectional medication review study including 2465 long-term care residents at 41 NHs in Oslo, Norway. Regular drug use was retrieved from the patients' medical records. DRPs were identified by using STOPP/START and NORGEP criteria and a drug-drug interactions database. NHs were grouped in quartiles based on average levels of drug use. The upper and lower quartiles were compared using independent samples t-test and associations between drug use and DRPs were tested by logistic regression. RESULTS: Patients' mean age was 85.9 years, 74.2% were women. Mean numbers of regular drugs per patient was 6.8 and varied between NHs from 4.8 to 9.3. The proportion of patients within each NH using psychotropic and analgesic drugs varied largely: antipsychotics from three to 50%, benzodiazepines from 24 to 99%, antidepressants from nine to 75%, anti-dementia drugs from no use to 42%, opioids from no use to 65% and paracetamol from 16 to 74%. Mean DRPs per patient was 2.0 and varied between NHs from 0.5 to 3.4. The quartiles of NHs with highest and lowest mean drugs per patient (7.7 vs. 5.7, p < 0.001) had comparable mean number of DRPs per patient (2.2 vs. 1.8, p = 0.2). Using more drugs and the use of opioids, antipsychotics, benzodiazepines and antidepressants were associated with more DRPs. CONCLUSIONS: The use of psychotropic and analgesic drugs was high and varied substantially between different NHs. Even if the use of more drugs, opioids and psychotropic drugs was associated with DRPs, no difference was found in DRPs between the NHs with highest vs. lowest drug use.

Characteristics of patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare.

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.

Quality of life of family carers of persons with young-onset compared to late-onset dementia.

Objectives: To compare quality of life (QOL) of family carers of persons with young- (YOD) to late-onset dementia (LOD).Methods: This was a cross-sectional comparison of 88 carers of persons with YOD and 100 carers of persons with LOD. The Quality of Life - Alzheimer's Disease questionnaire (QOL-AD) was used to measure QOL of both carers and persons with dementia. Depressive symptoms were measured by the Geriatric Depression Scale (GDS) for carers and the Cornell Scale for Depression in Dementia for persons with dementia. Care burden was measured by the Relatives' Stress Scale. Activities of Daily Living (ADL) of the persons with dementia were assessed using the total score from the Lawton & Brody Instrumental-ADL scale and the Physical Self-Maintenance Scale. Multiple linear regression models with interactions between covariates and group (YOD versus LOD) were estimated.Results: The QOL-AD scores of YOD-carers were significantly poorer compared to LOD-carers (mean difference 2.5 (95% CI 0.7; 4.3), p = 0.006). Poorer QOL of carers was associated with more depressive symptoms (mean QOL-AD change -0.5 (-0.6; -0.3), p < 0.001), but with no difference between the two groups. In contrast to LOD, QOL of carers of people with YOD was also significantly associated with symptom duration (p = 0.002), depressive symptoms of the persons with dementia (p = 0.030), ADL (p = 0.001), and carer burden (p = 0.002).Conclusion: YOD-carers reported significantly poorer QOL compared to LOD-carers. QOL was significantly associated with depressive symptoms in carers of both groups.