Journal of Multidisciplinary Healthcare, 2020

Characteristics, Burden of Care and Quality of Life of Next of Kin of People with Dementia Attending Farm-Based Day Care in Norway: A Descriptive Cross-Sectional Study

Abstract

Purpose:
Caring for people with dementia is often associated with burden of care and may influence the quality of life of the next of kin. The aim of this study was to describe the characteristics of the next of kin to people with dementia attending farm-based day care service (FDC) and identify characteristics associated with burden of care and quality of life (QoL) of next of kin.

Participants and Methods:
Ninety-four dyads of people with dementia and their next of kin were included from 25 FDCs in Norway in this descriptive cross-sectional study. The Relative Stress Scale (RSS) and the QoL–Alzheimer’s Disease Scale (QoL-AD) were used as outcomes measures.

Results:
The participants consisted of those who lived with a person with dementia (spouse/partner, 62%) and those who did not (children), with significant differences in age, education level, work employment, perceived social support, depression symptoms, burden of care, and QoL. In multiple regression models, RSS and QoL were associated with living with the person with dementia, anxiety symptoms and perceived social support. In addition, RSS was associated with neuropsychiatric symptoms (NPS) in the people with dementia.

Conclusion:
Our findings underline the importance of obtaining knowledge about the next of kin’s burden of care and QoL, of people with dementia attending an FDC. This knowledge is essential for those responsible for providing the best possible services for the next of kin and for developing targeted interventions to support the next of kin.

Forfattere

Liv Bjerknes Taranrød, Siren Eriksen, Ingeborg Pedersen, Øyvind Kirkevold

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BMC Geriatrics, 2020

Dropout from farm-based day care for people with dementia in Norway: a follow-up study

Abstract

Backgroud: Farm-based day care services (FDCs) for people with dementia are intending to provide social relationships and meaningful activities in an agricultural landscape and offer respite for next of kin. As this requires a certain cognitive and physical functioning, it is of interest to investigate how this service contribute during the course of dementia. In this study we aim to explore the individual characteristics predicting dropout from FDC. Furthermore, we investigate whether the participants who drop out of the service continue to live at home with another day care service or if they move to a residential care facility.
Methods:
The study includes 92 people with dementia attending FDCs in Norway, assessed with standardized instruments at baseline between January 2017 and January 2018. They were followed for 1 year, and dropouts from FDC during this period were mapped. The association between individual characteristics and dropout was assessed using a Cox proportional hazards regression analysis.
Results: Thirty-eight people stopped attending FDCs during the study. Twenty-six moved to residential care. Among the 12 who continued to live in their own homes, 9 people started in a regular day care service. Higher score on educational level and more severe dementia, as well as lower scores on social support, increased the probability of stopping FDC.
Conclusion: FDCs appeared as a service that is stable over time for most participants, as more than two-third could use the care facility until the need of residential care. The transfers within care services and levels of care seemed to be characterized by continuity. More research on the growing population of educated older adults with dementia are warranted, to facilitate for their course of care needs. Finally, extended knowledge is needed to improve the collaboration between private and public networks, such as day care services, to improve the experience of social support for people with dementia.

Forfattere

Tanja L. Ibsen, Øyvind Kirkevold, Grete G. Patil and Siren Eriksen

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Profiles of Met and Unmet Needs in People with Dementia According to Caregivers’ Perspective: Results from a European Multicenter Study

Abstract

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.

 

Journal of the American Medical Directors Association

Forfattere

Niels Janssen , Ron L Handels , Sebastian Köhler , Manuel Gonçalves-Pereira , Maria J Marques , Kate Irving , Louise Hopper , Anja Bieber , Martin Orrell , Geir Selbæk, Mona Michelet , Anders Wimo , Orazio Zanetti , Daniel M Portolani , Bob Woods , Hannah Jelley , Silvia M A A Evers , Frans R J Verhey , Actifcare Consortium.

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

Abstract

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.

Forfattere

Ingelin Testad, Linda Clare, Kaarin Anstey, Geir Selbæk, Guro Hanevold Bjørkløf, Catherine Henderson, Ingvild Dalen, Martha Therese Gjestsen, Shelley Rhodes, Janne Røsvik, Jessica Bollen, Jessica Amos, Martine Marie Kajander, Lynne Quinn and Martin Knapp

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Journal of the American Medical Directors Association, 2020

Does Psychotropic Drug Prescription Change in Nursing Home Patients the First 6 Months After Admission?

Abstract

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.
Results:
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.

 

 

Forfattere

Enrico Callegari, Jūratė Šaltytė Benth, Geir Selbæk, Cato Grønnerød Lic, Sverre Bergh

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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

Abstract

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.

Forfattere

Ines Rombach, Marvi Iftikhar, Gurleen S. Jhuti, Anders Gustavsson, Pascal Lecomte, Mark Belger, Ron Handels, Amparo Y. Castro Sanchez, Jan Kors, Louise Hopper, Marcel Olde Rikkert, Geir Selbæk, Astrid Stephan, Sietske A. M. Sikkes, Bob Woods, Manuel Gonçalves‑Pereira, Orazio Zanetti, Inez H. G. B. Ramakers, Frans R. J. Verhey, John Gallacher, Actifcare Consortium, LeARN Consortium, Filipa Landeiro on behalf of ROADMAP Consortium, Alastair M. Gray.

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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

Abstract

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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Forfattere

Janne Røsvik , Mona Michelet , Knut Engedal , Sverre Bergh , Anja Bieber ,
Manuel Gonçalves-Pereira , Daniel Michael Portolani , Louise Hopper ,
Kate Irving , Hannah Jelley , Liselot Kerpershoek , Gabriele Meyer , Maria J.
Marques , Britt-Marie Sjølund , Anders Sköldunger , Astrid Stephan , Frans
Verhey , Marjolein de Vugt , Bob Woods , Claire Wolfs , Orazio Zanetti & Geir
Selbaek

Nature, Scientific Reports 2020

Cerebrospinal fluid sTREM2 in Alzheimer’s disease: comparisons between clinical presentation and AT classification

Abstract

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.

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Frontiers in Aging Neuroscience, 2020

Blood Pressure in Different Dementia Disorders, Mild Cognitive Impairment, and Subjective Cognitive Decline

Abstract

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.

Forfattere

Knut Hestad, Knut Engedal, Peter Horndalsveen and Bjørn Heine Strand

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