Informal and formal care among persons with dementia immediately before nursing home admission


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.


Arnt Egil Ydstebø , Jurate Šaltytė Benth, Sverre Bergh, Geir Selbæk and Corinna Vossius

Open access til artikkelen

Dementia, 2020

The experience of attending a farm-based day care service from the perspective of people with dementia: A qualitative study


People with dementia have different needs, and it is important to have variation in the services that

are offered for this population. Farm-based day care aims to meet this diversity in need, but research

on such services is lacking. The present study provides knowledge about how people with dementia

experience attending farm-based day care services in Norway. Ten semi-structured interviews were

conducted for five different services, while the participants were at the farm. The interviews were

analysed in accordance with the content analysis of Graneheim, U., & Lundman, B. (2004) [Nurse

Education Today, 24(2), 105-112] and revealed three main categories that included (1) social relations,

(2) being occupied at the farm, and (3) individually tailored service. The findings were summarised in

the overall theme that attending day care at a farm makes me feel like a real participant. Our findings

indicate that the farm-based day cares in the present study provide person-centred care. The farm

setting facilitates services that are tailored to the individual, where the participants get to use their

remaining resources and spend time outdoors. Further, farm-based day care was described as being

suitable for people with or without farm experience and must be seen as an important supplement to

regular day care for those who could benefit from a more active service.

Tanja Ibsen, Siren Eriksen


JAMDA, 2020

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.


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.

Dementia and Geriatric Cognitive Disorders

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.


Knut Engedal, Maria Lage Barca, Peter Høgh, Birgitte Bo Andersen, Nanna Winther Dombernowsky, Mala Naik, Thorkell Eli Gudmundsson, Anne-Rita Øksengaard, Lars-Olof Wahlund, Jon Snaedal.

Journal of geriatric psychiatry and neurology, 2020

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


To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD).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.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.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.


Nathália R S Kimura, José Pedro Simões, Raquel Luiza Santos, Maria Alice Tourinho Baptista, Maria da Glória Portugal, Aud Johannessen, Maria Lage Barca , Knut Engedal , Jerson Laks , Valeska Marinho Rodrigues , Marcia C N Dourado

Journal of multidiciplinary healthcare, 2020

Community Health Care Workers’ Experiences on Enacting Policy on Technology with Citizens with Mild Cognitive Impairment and Dementia


Purpose: Assistive technologies and digitalization of services are promoted through health policy as key means to manage community care obligations efficiently, and to enable older community care recipients with mild cognitive impairment (MCI) and dementia (D) to remain at home for longer. The overall aim of this paper is to explore how community health care workers enacted current policy on technology with home-dwelling citizens with MCI/D.

Participants and Methods: Twenty-four community health care workers participated in one of five focus group discussions that explored their experiences and current practices with technologies for citizens with MCI/D. Five researchers took part in the focus groups, while six researchers collaboratively conducted an inductive, thematic analysis according to Braun & Clarke.

Results: Two main themes with sub-themes were identified: 1) Current and future potentials of technology; i) frequently used technology, ii) cost-effectiveness and iii) “be there” for social contact and 2) Barriers to implement technologies; i) unsystematic approaches and contested responsibility, ii) knowledge and training and iii) technology in relation to user-friendliness and citizen capacities.Conclusion: This study revealed the complexity of implementing policy aims regarding technology provision for citizens with MCI/D. By use of Lipsky’s theory on street-level bureaucracy, we shed light on how community health care workers were situated between policies and the everyday lives of citizens with MCI/D, and how their perceived lack of knowledge and practical experiences influenced their exercise of professional discretion in enacting policy on technology in community health care services. Overall, addressing systematic technology approaches was not part of routine care, which may contribute to inequities in provision of technologies to enhance occupational possibilities and meaningful activities in everyday lives of citizens with MCI/D.


Torhild Holthe, Liv Halvorsrud, Erik Thorstensen, Dag Karterud, Debbie Laliberte Rudman, Anne Lund

Journal of Alzheimer´s Disease, 2019

Toward a Sequential Strategy for Diagnosing Neurocognitive Disorders: A Consensus from the «Act On Dementia» European Joint Action


Neurocognitive disorders causing progressive cognitive, functional, and behavioral impairment remain underdiagnosed. The needs for a timely diagnosis are now widely acknowledged since person-centered care helps to preserve life quality and prevent crises. One powerful barrier to detection in primary care is the lack of an easy-to-follow stepwise approach, grounded in evidence and consistent with high-quality specialty practice. To help fill this gap, the current European Joint Action proposes a graduated diagnosis strategy tailored to the patients’ needs and wills, clarifying appropriate components for primary and specialty care. This strategy considers a first evaluation in primary care that may detect a neurocognitive disorder, that would lead to a second evaluation step allowing etiological diagnosis hypotheses performed mostly by the specialist. A third evaluation stage considering some biological, electrophysiological, or neuroimaging complementary techniques would be proposed to atypical cases or patients willing to consider access to research.