"Wolken vor den Augen" : Leben mit altersbedingter Makuladegeneration

Die Ärzte versichern mir, dass ich nicht erblinden werde. Ich habe eine Krankheit namens Makuladegeneration – Wolken vor den Augen. Ich bin seit meinem achten Lebensjahr kurzsichtig. Verschwommene Wahrnehmung ist für mich also nichts Neues, aber mit Brille habe ich immer tadellos gesehen. Peripher sehe ich noch gut, doch direkt vor mir ist ein ständig ausgefranster grauer Fleck, der größer wird. Meine Bilder aus der Vergangenheit sind allerdings noch lebendig. Betroffen ist die Gegenwart, und die Menschen aus meiner Vergangenheit, mit denen ich noch zusammenkomme, haben sich in wolkenverhangene Wesen verwandelt. Anfangs beängstigte mich das, doch habe ich von Leidensgenossen und von meinen Ärzten erfahren, dass das, was ich erlebe, ganz normal ist.« So beschreibt der Protagonist in Siri Hustvedts Roman »Was ich liebte« die Symptome der altersbedingten Makuladegeneration. ..

Lernen im Lebenslauf : eine Einführung in die Altersbildung ; [Rezension]

Rezension zu: Sylvia Kade: Altern und Bildung. Eine Einführung, Reihe: Erwachsenenbildung und lebensbegleitendes Lernen, Band 7, W. Bertelsmann Verlag, Bielefeld 2007, ISBN 978-3-7639-3329-7, 253 Seiten, 24,90 Euro

Improving hearing and vision in dementia : Protocol for a field trial of a new intervention

IntroductionQuality of life and other key outcomes may be improved by optimising hearing and vision function in people living with dementia. To date, there is limited research assessing the efficacy of interventions aimed at improving hearing and vision in people with dementia. Here, we outline a protocol to field test a newly developed home-based intervention, designed to optimise sensory functioning in people with dementia in three European sites. The results of this study will inform the design and conduct of a full-scale randomised controlled trial (RCT) in five European sites.Methods and analysisIn this multisite, single arm, open label, feasibility study, participants with dementia (n=24) will be assessed for hearing and vision impairments and be prescribed a hearing aid and/or glasses. Each participant will have a study partner (‘dyads’). A subset of dyads will receive ‘sensory support’ from a ‘sensory support therapist’, comprising home visits over 12 weeks. The therapist will offer the following intervention: adherence support for corrective devices; adaptations to the home environment to facilitate sensory function; communication training; and referral to community-based support services. The primary outcomes will be process measures assessing the feasibility, tolerability and acceptability of: (1) the intervention components; (2) the method of implementation of the intervention and (3) the study procedures, including outcome assessment measures. Quantitative data will be collected at baseline and follow-up. Qualitative data using semistructured interviews will be collected postintervention and weekly, using participant diaries. Finally, we will explore a model of cost-effectiveness to apply in the subsequent full-scale trial. This feasibility study is a necessary step in the development of a complex, individualised, psychosocial intervention. The data gathered will allow logistical and theoretical processes to be refined in preparation for a full-scale RCT.Ethics and disseminationEthical approval was obtained in all three participating countries. Results of the field trial will be submitted for publication in a peer-reviewed journal.</jats:sec

Feasibility of an Intervention to Support Hearing and Vision in Dementia:The SENSE-Cog Field Trial

OBJECTIVES: People with dementia (PwD) frequently experience hearing and vision impairment that is underrecognized and undertreated, resulting in reduced quality of life. Managing these impairments may be an important strategy to improve outcomes in PwD. Our objective was to field-trial a multifaceted sensory intervention (SI) to enhance hearing and vision in PwD. DESIGN: An international single-arm open-label feasibility, acceptability, and tolerability study. SETTING: Home-based setting in the United Kingdom, France, and Cyprus. PARTICIPANTS: Adults aged 60 years and older with mild-to-moderate dementia and uncorrected or suboptimally corrected hearing and/or vision impairment, and their study partners (n = 19 dyads). INTERVENTION: A sensory intervention (SI), comprising assessment of hearing and vision, fitting of corrective devices (glasses, hearing aids), and home-based support from a sensory support therapist for device adherence and maintenance, communication training, referral to support services, environmental sensory modification, and optimization of social inclusion. MEASUREMENTS: Ratings of study procedure feasibility, and intervention acceptability/tolerability, ascertained through questionnaires, participant diaries, therapist logbooks, and semistructured interviews. RESULTS: We successfully delivered all intervention components, and these were received and enacted as intended in all those who completed the intervention. No serious adverse events were reported. Acceptability (ie, understanding, motivation, sense of achievement) and tolerability (ie, effort, fatigue) ratings of the intervention were within a priori target ranges. We met recruitment and retention (93.8%) targets in two of the three sites. Participants completed more than 95% of diary entries, representing minimal missing data. Delays in the logistics circuit for the assessment and delivery of hearing aids and glasses were identified, requiring modification. The need for minor modifications to some outcome measures and the inclusion criteria were identified. CONCLUSION: This is the first study combining home-based hearing and vision remediation in PwD. The positive feasibility, acceptability, and tolerability findings suggest that a full-scale efficacy trial, with certain modifications, is achievable

Individualised sensory intervention to improve quality of life in people with dementia and their companions (SENSE-Cog trial): study protocol for a randomised controlled trial

Background: Hearing and vision impairments are highly prevalent in people with dementia and may have a negative impact on quality of life and other dementia-related outcomes. Intervening to optimise sensory impairment and support sensory function may be a means of improving dementia-related outcomes. The SENSE-Cog trial will test whether a home-based multi-part sensory intervention is effective in improving quality of life and other key outcomes in people with dementia and hearing or vision problems (or both) and their companions. Methods: This is an European, multi-centre, observer-blind, pragmatic, randomised controlled trial. Three hundred fifty four people with dementia and hearing or vision impairment (or both) and their companions will be randomly assigned to receive either "care as usual" or a multi-component sensory intervention including assessment and correction of hearing or vision impairments (or both), home-based (maximum 10 visits over 18 weeks), therapist-delivered sensory support (that is, adherence to devices; improving the sensory environment (that is, lighting), communication training, and sign-posting to other support agencies). Change from baseline to intervention end (18 weeks) and post-intervention (36 weeks) will be compared between the two arms in the following outcomes: quality of life (primary endpoint), sensory and cognitive functional ability, relationships, mental well-being, health resource utilisation and cost-effectiveness. Discussion: This is one of two articles outlining the SENSE-Cog trial. Here, we describe the protocol for the effectiveness of the SENSE-Cog intervention. A parallel and complementary process evaluation will be described elsewhere. If the SENSE-Cog trial demonstrates that the sensory intervention improves outcomes in dementia, we will make a toolkit of training materials, resources and information available to health and social care providers to implement the intervention in routine practice. This will be a significant contribution to the therapeutic management of people with dementia and sensory impairment. Trial registration: ISRCTN (Trial ID: ISRCTN17056211) on 19 February 2018

Trials

Background Optimising hearing and vision function may be important in improving a range of outcomes for people living with dementia (PwD) and their companions. The SENSE-Cog cross-national randomised controlled trial (RCT) is evaluating the effectiveness of a sensory intervention (SI) to improve quality of life for PwD with concurrent hearing and/or vision impairment, in five European countries. To ascertain how or why the intervention will, or will not, achieve its outcomes, we have designed a process evaluation to explore potential discrepancies between expected and observed outcomes. This will also help us to understand how context may influence the outcomes. Here we describe the protocol for this process evaluation, which is embedded within the RCT. Methods/design We will use a mixed methods approach with a theoretical framework derived from the UK Medical Research Council’s’ guidance on process evaluations. It will include the following: (1) evaluating how key aspects of the intervention will be delivered, which will be important to scale the intervention in real world populations; (2) characterising the contextual issues, which may shape the delivery and the impact of the intervention in different countries; and (3) investigating possible causal mechanisms through analyses of potential moderators and mediators. To avoid bias, we will analyse the process data before the analysis of the main effectiveness outcomes. Discussion This evaluation will provide insight into how the complex SENSE-Cog SI will be tailored, enacted and received across the different European contexts, all of which have unique health and social care economies. The findings will provide insight into the causal mechanisms effecting change, and will determine whether we should implement the intervention, if effective, on a wider scale for PwD and concurrent sensory impairment

Education in late adulthood embedded in social worlds : dichotomies and beyond

In der erziehungswissenschaftlichen Diskussion um das Altern haben bislang Prozesse des Stillstands und des Verlusts wenig an Bedeutung erlangt. Im Vordergrund standen vielmehr Aktivierung und an Steigerung orientierte Entwicklung. Die vorgestellte empirische Studie nähert sich aus erziehungswissenschaftlicher Sicht der Frage des individuellen wie institutionellen Umgangs mit Verlusten und Grenzen im Alternsprozess (am Beispiel einer im Alter eintretenden Sehbehinderung, der Makuladegeneration). Die Beschäftigung mit diesem Gegenstand verlangt nach einem theoretischen Rahmen, der sowohl individuelle Lebenswelten in den Blick nimmt und gleichzeitig deren institutionell und sozial strukturierte Infrastrukturen. Dafür arbeitet die qualitativ angelegte Studie mit der Heuristik der "sozialen Welt". In diese ist eine Vielzahl pädagogischer Formen eingebettet, auf die von den Befragten jeweils unterschiedlich Bezug genommen wird. Die Relationierung von Akteursperspektiven innerhalb der untersuchten sozialen Welt zeigt dabei auf, dass man den Umgang mit einer altersbedingten Kompetenzeinbuße nicht angemessen begreifen kann, wenn man lineare Vorstellungen pädagogischen Handelns im Sinne einer Steigerung zugrunde legt. Zudem zeigt sich, dass das Pädagogische in sozialen Formen institutionalisiert ist, die eng mit nicht-pädagogischen Handlungsformen verschränkt sind.The debates on ageing in educational sciences have neglected processes of standstill and loss in the past. The focus was instead on development based on activation and progression. The study presented here approaches the question of individual and institutional treatment of loss and constraints during the ageing process from an educational perspective (using the example of age-related visual impairment). An investigation of this subject requires a theoretical concept, which considers the individual's life-worlds as well as the institutional and socially structured infrastructure they are embedded in. For this aim this study, working with a qualitative approach, uses the heuristic of "social worlds". These worlds encompass a multitude of pedagogic forms, to which the respondents relate differently. Considering such relations within the framework of social worlds from an actor-perspective demonstrates that it is not possible to deal with age-related loss of competences by linear conceptions of pedagogic action as progression. Furthermore, it can be shown that the pedagogic actions are institutionalized in social forms, which are closely linked to non-pedagogic forms of action

Cross-national and multi-language qualitative research: challenges and recommendations

Interest in cross-national partnership is increasing in Europe, a situation very much reflected in calls for funding. Multi-language qualitative research methodologies need to be strengthened in order to support this growing trend toward the promotion of cross-national collaboration. This practice analysis reports on our experience of carrying out cross-national and multi-language based qualitative research. Based on this, we recommend taking into account the potential challenges of language and national culture from the planning phase onwards, handling them in a structured, predefined way throughout the research process and using software to assist with the challenges brought about in a multi-language environment