Forskningsartikler

Objective Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers’ assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services.

Methods An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis.

Results Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am.

Conclusions People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.

Elisabeth Wiken Telenius, Siren Eriksen, Anne Marie Mork Rokstad

Although a clear relationship has been established between elevated alcohol consumption and psychiatric problems in old age, there are few descriptions of the prevalence of elevated alcohol consumption in older adults who have been referred to geriatric psychiatric treatment.

To describe the prevalence of self-reported elevated alcohol consumption in men and women referred to geriatric psychiatry wards in Norway, and to explore factors associated with elevated alcohol consumption.

This cross-sectional study includes data from a registry of geriatric psychiatry patients aged ≥ 65 years from December 2016 until December 2018. The outcome measure was reported elevated alcohol consumption assessed with the short version of the Alcohol Use Disorders Identification Test (AUDIT-C). The analyses used demographic data as well as a measure of cognitive function, psychiatric diagnosis and use of psychotropic drugs.

In total, 367 patients (131, 35.7% men) with a mean (SD) age of 74.7 (7.6) years were included. Of these patients, 27% scored above the pre-set cut-off for elevated alcohol consumption according to AUDIT-C (≥ 3 and 4 for women and men, respectively). The prevalence of elevated alcohol did not differ by gender. In adjusted logistic regression analysis, older age, living with someone and use of antidepressants were associated with reduced odds for reporting elevated alcohol consumption (OR 0.93, 95% CI 0.89–0.96; OR 0.54, 95% CI 0.31–0.97; and 0.54, 95% CI 0.32–0.92, respectively).

A relatively high proportion of psychiatric patients aged 65 years or older reported elevated alcohol consumption, regardless of diagnosis. Older age, living with someone and use of antidepressants were associated with lower odds for elevated alcohol consumption.

Anne-Sofie Helvik, Knut Engedal, Aud Johannessen

Purpose

To examine how people (<65 years) with young-onset dementia (YOD) express awareness of dementia and how they seem to handle awareness as a strategy to preserve quality of life over time.

Method

A longitudinal qualitative study with individuals with YOD was performed with interviews every 6 months over 5 years for a maximum of 10 interviews. The interviews were analysed by modified grounded theory adapted to narrative inquiry.

Results

Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles during dementia—live in the moment, ignore the dementia, and make the best of it—seem to be rather consistent throughout disease progression. Transitions in the life situation may change the individual’s awareness of dementia.

Conclusion

Unawareness of dementia may have an important adaptive function for preserving quality of life. Increasing awareness of dementia must be approached with reflexivity and great sensitivity.

Kirsten Thorsen, Marcia C.N. Dourado, Aud Johannessen

The number of older people, including those living with dementia, is rising, as younger age mortality declines. However, the age-specific incidence of dementia has fallen in many countries, probably because of improvements in education, nutrition, health care, and lifestyle changes. Overall, a growing body of evidence supports the nine potentially modifiable risk factors for dementia modelled by the 2017 Lancet Commission on dementia prevention, intervention, and care: less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact. We now add three more risk factors for dementia with newer, convincing evidence. These factors are excessive alcohol consumption, traumatic brain injury, and air pollution. We have completed new reviews and meta-analyses and incorporated these into an updated 12 risk factor life-course model of dementia prevention. Together the 12 modifiable risk factors account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed. The potential for prevention is high and might be higher in low-income and middle-income countries (LMIC) where more dementias occur.

Our new life-course model and evidence synthesis has paramount worldwide policy implications. It is never too early and never too late in the life course for dementia prevention. Early-life (younger than 45 years) risks, such as less education, affect cognitive reserve; midlife (45–65 years), and later-life (older than 65 years) risk factors influence reserve and triggering of neuropathological developments. Culture, poverty, and inequality are key drivers of the need for change. Individuals who are most deprived need these changes the most and will derive the highest benefit.

Gill Livingston, Jonathan Huntley, Andrew Sommerlad, David Ames, Clive Ballard, Sube Banerjee, Carol Brayne, Alistair Burns, Jiska Cohen-Mansfield, Claudia Cooper, Sergi G Costafreda, Amit Dias, Nick Fox, Laura N Gitlin, Robert Howard, Helen C Kales, Mika Kivimäki, Eric B Larson, Adesola Ogunniyi, Vasiliki Orgeta, Karen Ritchie, Kenneth Rockwood, Elizabeth L Sampson, Quincy Samus, Lon S Schneider, Geir Selbæk, Linda Teri, Naaheed Mukadam

Background

Research aiming to improve the hospital experience for patients with dementia and their informal carers is strongly recommended. The present review aimed to describe the research on interventions to meet the needs of people with dementia in acute hospital settings regarding physical environment, organization of care, and staff knowledge of dementia and competence in person-centred care. An integrative review design was applied. We searched for studies in PubMed, Ovid Medline, Cinahl, Embase, Swemed+, and Cochrane databases using the Mixed Methods Appraisal Tool (MMAT) for quality evaluation. Twenty-seven articles were included, describing the perspectives of people with dementia, informal carers, and professional carers. The MMAT score ranged from two to four. Twelve studies described needs and experiences, mostly using a qualitative design. Common themes and results were synthesized. The studies identified a need to enhance staff competence regarding dementia and person-centred care. Fifteen studies described interventions: two were qualitative; three used mixed method, and 10 were quantitative, of which two were randomized controlled trials and eight were observational studies. Five types of interventions were identified. Three types could positively impact staff knowledge about dementia and person-centred care. One type was experienced as positive regarding organisation of care for patients with dementia. None of the intervention studies found evidence for effects on the identified needs regarding physical environment.

Conclusion

The included studies suggest that staff need more knowledge regarding dementia and person-centred dementia care and that training interventions implemented to enhance staff competence had promising results. However, there is a need for research on the needs of patients with dementia in acute hospital settings regarding physical environment and effect of design elements. There is also a scarcity of intervention studies focusing on the effect of models of care that support the psychosocial needs of patients with dementia.

Janne Røsvik, Anne Marie Mork Rokstad

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

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.

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.

Dignified care is a central issue in the nursing care of older adults. Nurses are expected to treat older adultswith dignity, and older adults wish to be treated in a dignified manner. Researchers have recommendedinvestigating the concept of dignity based on specific contexts and population groups. This meta-synthesisstudy aims to explore the understandings of dignity from the perspective of older adults in the Nordiccountries. Synthesising findings from qualitative studies on older adults’ experiences of dignity has providedimportant insight into what can be essential for dignified care in a Nordic context. The importance ofvisibility and recognition for the experience of dignity is an overarching theme in all the studies. Theparticipants’ descriptions mostly implicated an existence dominated by a lack of recognition. The olderadults do not feel valued as people or for their contribution to society and strive to tone down theirillnesses in an attempt to become more visible and acknowledged as people. Toning down their illnesses andmasking their needs can protect their independence. At the same time, becoming less visible can leave themwithout a voice. The metaphorical phrase protected and exposed by a cloak of invisibility is used to express theauthors’ overall interpretation of the findings. Lack of recognition and being socially invisible is a genuinethreat to older adults’ dignity.

Anne Clancy, Nina Simonsen, Johanne Lind, Anne Liveng, Aud Johannessen