Forskningsartikler

Objectives: Patients with dementia follow different trajectories of progression. We aimed to investigate which factors at the time of diagnosis could predict trajectory group membership.
Design: Longitudinal observational study.
Setting: Specialized memory clinic, Oslo University Hospital in Norway.
Participants: Patients assessed at the memory clinic, between 12 January 2009 and 31 July 2016, who were registered in the Norwegian Registry of persons assessed for cognitive symptoms (NorCog) and diagnosed with dementia after the baseline examination period (n = 442). The patients were followed up to 3 years, with an average of 3.5 examinations.
Measurements: Clinical Dementia Rating Scale Sum of Boxes (CDR-SB), Mini-Mental State Examination (MMSE), the Consortium to Establish a Registry of Alzheimer’s disease (CERAD) 10-item word list delayed recall, the Clock Drawing Test, (CDT) Trail Making Test A (TMT-A), and Neuropsychiatric Inventory Questionnaire (NPI-Q). Based on changes in scores on the CDR-SB, we used group-based trajectory modeling (GBTM) to explore the presence of trajectory groups. Multinomial logistic regression was used to explore whether a set of baseline variables could predict trajectory group membership.
Results: Three trajectory groups were identified, one with a slow progression rate and two with more-rapid progression. Rapid progression was associated with older age, lower cognitive function (MMSE and TMT-A), and more-pronounced neuropsychiatric symptoms (NPI-Q) at the time of diagnosis.
Conclusions: Our findings demonstrate the heterogeneity of dementia progression and describe risk factors for rapid progression, emphasizing the need for individual follow-up regimes. For future intervention studies, our results may guide the selection of patients.

Trine Holt Edwin, Bjørn Heine Strand, Karin Persson, Knut Engedal, Geir Selbæk and Anne-Brita Knapskog.

Background: Dementia is affecting both the person with the disease and the family members. It is associated with nursing home admission, and a reduced ability to perform personal activities of daily living (P-ADL). The aim of this study was to examine the association between the severity of dementia and P-ADL function, and to study if additional factors such as neuropsychiatric symptoms, type of nursing home unit, and use of medication were associated with P-ADL function.
Methods: A total of 582 nursing home residents with dementia, included at admission to the nursing home, were followed with biannual assessments for 36 months. P-ADL was assessed using the Physical Self-Maintenance scale, and severity of dementia was measured with the Clinical Dementia Rating scale. In addition, neuropsychiatric symptoms, general physical health, and use of medications were assessed at the same time points. Demographic information was collected at baseline. Linear mixed models were estimated.
Results: There was a significant (p < 0.05) non-linear decline in P-ADL function over time in analysis not adjusting for any characteristics. More severe dementia at baseline and at the follow-up assessments was associated with lower P-ADL function (p < 0.001), with the association being stable over time. A higher level of neuropsychiatric symptoms, not using anti-dementia medication, being in a regular care unit as compared to a special care unit and having poor/fair general physical health as compared to good/excellent, were associated with a lower P-ADL function.
Conclusion: The association between more severe dementia and lower P-ADL function was stable over a 36-month follow-up period of nursing home residents with dementia. Health care planners and clinicians should be aware of this when planning for and treating nursing home residents.

Reidun Haarr Johansen, Karoline Olsen, Sverre Bergh, Jūratė Šaltytė Benth, Geir Selbæk and Anne-Sofie Helvik

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