Forskningsartikler

Background: Persons living with aphasia have unique needs and challenges that would benefit from greater understanding among all health professionals.

Aim: To explore which factors influence social dignity in persons with aphasia in their contact with healthcare professionals.

Methods: A literature search was conducted in CINAHL, MEDLINE, Embase, PSYCINFO, ProQuest, Web of Science, ERIC and Epistemonikos. A total of 317 studies were read and eight were finally included. Qualitative content analysis methods were applied for data extraction and interpretation.

Results: One overarching theme emerged: enabling person-centred communication among healthcare professionals. This covered two main themes – the experiences of empathy and of empowerment. The first of these is based on the subthemes of openness and awareness of feelings, and being acknowledged as a unique person. The second covers three subthemes: involvement in care and rehabilitation; capacity building to gain control and confidence in communication; and enabling communication in community aphasia groups.

Conclusions: Healthcare professionals’ ability to safeguard the social dignity of persons with aphasia is contingent on enabling them to communicate in a person-centred manner. Without such communication, persons with aphasia may perceive that their feelings, uniqueness, involvement and confidence are being disregarded.

Signe Vallumrød, Aud Johannessen and Anne Lyberg.

Vitenskapelig artikkel.
Hensikt: Kartlegge og sammenligne fysisk funksjon hos eldre personer som får fysioterapi hos avtalefysioterapeuter og fastlønnede fysioterapeuter. Beskrive karakteristika av behandlingen som blir gitt.
Design: Tverrsnittsundersøkelse.
Materiale: 250 pasienter fra fysioterapitjenesten i Kongsberg kommune, 179 deltagere ble inkludert fra avtalefysioterapeuter og 71 fra fastlønnede fysioterapeuter.
Metode: Spørreskjema og fysiske tester (Short Physical Performance Battery og ganghastighet).
Resultat: Pasientene som mottar fysioterapi fra de fastlønnede fysioterapeutene har et lavere funksjonsnivå enn de de som mottar fysioterapi fra avtaleterapeutene. De er også eldre, har flere sykdommer og bruker flere offentlige tjenester.
Konklusjon: Kartleggingen av pasienter over 70 år som mottar fysioterapi i Kongsberg kommune viser at avtaleterapeuter og fastlønnede terapeuter følger opp ulike pasientgrupper, men at det hos begge grupper er en stor andel sårbare eldre med begrenset reservekapasitet.

Gro Gujord Tangen, Jon-Håvard Hurum, Ragnhild Karlsen, Kjersti Haugan, Einar Frogh, Anne Kari Skarbekk, Hilde Stendal Robinson.

Introduction:  For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia.
Method: This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis.
Results: Four categories were revealed: (1) rooted in the past – “I am the same as before”; (2) focussing on the present – “Nobody has tomorrow”; (3) thinking about the future – “What is going to happen to me?”; and (4) changes in the experience of self over time – “I used to….” The latent overall meaning was expressed as “being engaged with the dimensions of time.”
Discussion/conclusion: The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.

Siren Eriksen, Ruth Louise Bartlett, Ellen Karine Grov, Tanja Louise Ibsen, Elisabeth Wiken Telenius, Anne Marie Mork Rokstad.

Background: Awareness of functional status may underlie specific profiles and differences related to stage severity in
individuals with Alzheimer’s disease (AD).
Objective: This study aimed to assess self-reported experiences of awareness of functional activity in people with mild and
moderate AD.
Methods: This is a mixed methods approach. The qualitative part was conducted through semi-structured interviews concerning the experiences and awareness of deficits in 38 older adults with mild or moderate AD. The quantitative approach
included a comparison between groups with regard to concerns of awareness and clinic and demographic data.
Results: Impairment on awareness of disease and awareness of functional deficits was observed even in the mild stages of
AD. There was also a noticeable progression of impairments of both kinds of awareness from mild to moderate stage of
disease. The majority of participants with mild and moderate AD were partially aware of their functional deficits. Both groups
of participants reported some negative impact; however, they were not able to entirely describe their functional status. Also,
deficits to recognize the need for help with hygiene and general tasks were observed. Significant differences were found in
awareness of need for help with general tasks and awareness of need for help with hygiene tasks.
Conclusion: People with mild and moderate AD may describe their aware of the disease better than specific functional
deficits, and most of them can provide some reports concerning to the impact of the disease.

Paula Gasparini Emery Trindade, Raquel Luiza Santos, Aud Johannessen, Jose Pedro Simoes Neto, Marcia Cristina Nascimento Dourado.

Purpose: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia.

Methods: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman’s correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries.
Results: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect.
Conclusion:
This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Daphne C. Voormolen, Job van Exel, Werner Brouwer, Anders Sköldunger, Manuel Goncalves‑Pereira, Kate Irving, Anja Bieber, Geir Selbaek, Bob Woods, Orazio Zanetti, Frans Verhey, Anders Wimo, Ron L. H. Handels, the Actifcare Consortium

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.

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

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.

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

Journal of the American Medical Directors Association

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.

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.

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