Profiles of Met and Unmet Needs in People with Dementia According to Caregivers’ Perspective: Results from a European Multicenter Study
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.
BMC Public Health, 2020
Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers (SHAPE): study protocol for a multi-centre randomised controlled trial
Background: With an increasing number of people with dementia worldwide and limited advancement in medical treatments, the call for new and cost-effective approaches is crucial. The utility of self-management has been proven in certain chronic conditions. However, very little work has been undertaken regarding self-management in people with dementia.
Methods: The SHAPE trial will include 372 people with mild to moderate dementia to evaluate the effectiveness and cost-effectiveness of an educational programme combining approaches of self-management, health promotion, and e-learning for care partners. The study is a multi-site, single-randomised, controlled, single-blinded trial with parallel arms. The intervention arm is compared with treatment as usual. The intervention comprises a 10-week course delivered as group sessions for the participants with dementia. The sessions are designed to develop self-management skills and to provide information on the nature of the condition and the development of healthy behaviours in a supportive learning environment. An e-learning course will be provided for care partners which covers similar and complementary material to that discussed in the group sessions for the participant with dementia.
Discussion: This trial will explore the effect of the SHAPE group intervention on people with mild to moderate dementia in terms of self-efficacy and improvement in key health and mental health outcomes and cost-effectiveness, along with carer stress and knowledge of dementia.
Journal of the American Medical Directors Association, 2020
Does Psychotropic Drug Prescription Change in Nursing Home Patients the First 6 Months After Admission?
Objectives: To explore the course of psychotropic drug (PTD) prescription from admission (BL) to 6-month follow-up (6m) in Norwegian nursing homes (NHs). To examine how clinical variables, such as neuropsychiatric symptoms (NPS), cognition, physical health, and NH characteristics at BL are associated with prescription rates at 6 months.
Design: An observational longitudinal cohort study (data from the Resource Use and Disease Course in Dementia–Nursing Home study) designed to examine the course of dementia, psychiatric and somatic diseases, and drug prescriptions in NH patients during the first 6 months after admission.
Setting and participants: We included 696 patients at admission to 47 representative Norwegian NHs.
Methods: Demographic and clinical characteristics at BL and 6m are presented. Dementia severity was assessed by the Clinical Dementia Rating scale and the Functional Assessment Staging of Alzheimer’s Disease scale. Final diagnosis was made by 2 of the authors (G.S. and S.B.) according to ICD-10 criteria. Prevalence, incidence, and persistence rates of PTD prescriptions for people with dementia are presented. Generalized mixed models were used to identify possible predictors for the course of PTD prescription from BL to 6m.
Prescription rates of antidepressants, antipsychotics, anxiolytics, sedatives, and hypnotics increased in people with dementia from BL (67.5% received at least 1 PTD) to 6m (74.0% received at least 1 PTD). Younger age and higher Neuropsychiatric Inventory–affective subsyndrome score at BL were associated with higher odds of antidepressant prescription, whereas patients with higher comorbidity at BL had lower odds of receiving antidepressants, both at BL and 6m. Higher Neuropsychiatric Inventory-affective subsyndrome scores at BL were associated with higher odds of sedative and hypnotic prescription at both assessment points.
Conclusions and implications:
PTD prescription rates increase from BL to 6m. Medication appropriateness should be frequently evaluated after admission to optimize PTD prescriptions.
Quality of Life Research, 2020
Obtaining EQ-5D-5L utilities from the disease specific quality of life Alzheimer’s disease scale: development and results from a mapping study
Purpose The Quality of Life Alzheimer’s Disease Scale (QoL-AD) is commonly used to assess disease specific health-related
quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available.
Methods Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error.
Results The response model using multinomial regressionincluding age and sex, performed best in both the estimation dataset and an independent dataset.
Conclusions The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoLAD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.
Aging and mental health, 2020
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.
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Nature, Scientific Reports 2020
Cerebrospinal fluid sTREM2 in Alzheimer’s disease: comparisons between clinical presentation and AT classification
Triggering receptor expressed on myeloid cells 2 (TREM2) is an innate immune receptor expressed by microglia. Its cleaved fragments, soluble TREM2 (sTREM2), can be measured in the cerebrospinal fluid (CSF). Previous studies indicate higher CSF sTREM2 in symptomatic AD; however most of these studies have included biomarker positive AD cases and biomarker negative controls. The aim of the study was to explore potential differences in the CSF level of sTREM2 and factors associated with an increased sTREM2 level in patients diagnosed with mild cognitive impairment (MCI) or dementia due to AD compared with cognitively unimpaired controls as judged by clinical symptoms and biomarker category (AT). We included 299 memory clinic patients, 62 (20.7%) with AD-MCI and 237 (79.3%) with AD dementia, and 113 cognitively unimpaired controls. CSF measures of the core biomarkers were applied to determine AT status. CSF sTREM2 was analyzed by ELISA. Patients presented with comparable CSF sTREM2 levels as the cognitively unimpaired (9.6 ng/ml [SD 4.7] versus 8.8 ng/ml [SD 3.6], p = 0.27). We found that CSF sTREM2 associated with age-related neuroinflammation and tauopathy irrespectively of amyloid β, APOE ε4 status or gender. The findings were similar in both symptomatic and non-symptomatic individuals.
Frontiers in Aging Neuroscience, 2020
Blood Pressure in Different Dementia Disorders, Mild Cognitive Impairment, and Subjective Cognitive Decline
The aim of the study was to investigate whether blood pressure (BP) differed among people with different dementia diagnoses, mild cognitive impairment, and subjective cognitive decline and whether BP differences were observed across age and sex. Our study population comprised clinical data from 6,236 patients (53.5% women) aged 45– 97 years (Mean = 73.9, SD = 9.6) referred to dementia assessment in 42 outpatient clinics across Norway during 2009–2019. Patients with the following diagnoses were included: Subjective cognitive decline (SCD), Mild cognitive impairment (MCI), dementia due to Alzheimer’s disease (AD), Vascular dementia (VaD), mixed AD and VaD, and dementia in Parkinson’s disease/Lewy body disease (PDD/LBD). For all diagnostic groups, SBP increased with age until about 80 years, after which it trended downward, whereas DBP declined after 60 years of age for all diagnostic groups. Patients aged 65 years and younger with SCD had lower SBP compared to AD patients at the same age, but SBP increased rapidly with increasing age, resulting in a substantially higher SBP at 80 + years compared with all other diagnostic groups. No other differences in SBP or diastolic blood pressure (DBP) were found among patients with the different dementia diagnosis. Neither SBP nor DBP differed between MCI and AD groups. An
interaction between age and gender was found for SBP at younger ages, as women started out with a lower pressure than men did but ended up with higher SBP. Conclusion: Among 80+ patients, blood pressure did not differ as a function of the various dementia disorders. The SBP for the SCD patients of various age groups differed from all other diagnostic groups, indicating either that internal regulation of BP in older people is a risk factor for dementia or that brain damage causing dementia or MCI may led to changes in blood pressure. Brain aging seems to influence SBP differently in men and women.
Socialmedicinsk tidskrift, 2020
How is Health Promotion Research Undertaken in a Nordic Context? A Scoping Review of Doctoral Dissertations from 2008–2018
This scoping review was commenced as a collaboration within the Nordic Health Promotion Research Network (NHPRN). The overall aim was to explore how research under the label ‘health promotion’ was undertaken in a Nordic context. The search for dissertations published in Denmark, Finland, Iceland, Norway and Sweden was limited to the years 2008 to 2018. Manual searches of university websites, as well as different databases in the Nordic countries, were required for collecting dissertations from all universities. The collection of dissertations was more difficult than expected. There were 56 published PhD dissertations from 6 universities in Denmark, 51 from 8 universities in Finland, 0 from Iceland, 53 from 7 universities in Norway and 193 from 22 universities in Sweden. Almost half of the analysed dissertations combined qualitative and quantitative methods. About one-third of the dissertations had a settings approach, followed by a societal approach and individual approach. Finland and Sweden presented more intervention studies than the other countries. A majority of the intervention studies included individual lifestyle issues. Based on the analysis of the research approaches, more dissertations embracing societal perspectives and broader determinants of health may be recommended for future Nordic dissertations.
Background: Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It also describes main providers of informal care and assesses the extent of informal care rendered by the extended social network.
Methods: In this cross-sectional study, we collected data about persons with dementia that were newly admitted to a nursing home in Norway. Information about the amount of formal and informal care during the last 4 weeks preceding nursing home admission was collected from the primary caregivers. Clinical data were collected by examining the patients, while sociodemographic data was collected from the patients’ files.
Results: A total of 395 persons with dementia were included. The amount of informal care provided by the family caregiver was 141.9 h per month SD = 227.4. Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD = 11.2) hours per month and represented 3.8% of the total informal care rendered to the patients. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD = 50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver’s working situation. Good/excellent general health was associated with less formal care.
Conclusion: Persons with dementia on the verge of admission to a nursing home are mainly supported by the family caregiver, and the use of informal care is particularly high among co-residents. In order to delay nursing home admission, future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients of formal care services.