The RHAPSODY studyBridget Jones PhD, CPsychol, Health Psychologist

on behalf

The Rhapsody Study GroupKey Reference: Metcalfe, A., et al. "Online information and support for carers of people with young onset dementia: a multi-site randomised controlled pilot study." Int J Geriatr Psychiatr 2019.

Aims and Objectives

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Multidisciplinary research collaborationto improve support for family carers of people diagnosed with YOD

- England, France, Germany, Netherlands, Portugal, Sweden -

Explore carers‘ information and support needs

Evaluated policies, guidelines and information environment

Develop an online programme

Pilot study: Assess feasibility, acceptability and effectiveness

5 Workpackages

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Project management

Policies and information

Carers‘ perspectives

Programme development

Pilot studyBackground Research

Disseminate Findings

Future Focus: Revise, translate

WP3 Carers‘ Perspectives on requirements of programme

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• Why and how to get help• Early recognition• Social, financial, legal issues• Understanding language and cognition• Responding to behavioural changes• Interpersonal problems• Medical perspective• Looking after yourself• Causes of YOD

2 groups each country: Over 80 carers

Focus groups in all 6 countries

WP4 Programme Development

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Carer‘s Guide for Young-Onset DementiaProf of Psychiatry, Clinical Psychologists, Health Psychologist, Program Developers

• Introduction• What is YOD• Medical perspective• Problems and solutions• Challenging behaviour• Family issues• How to get help• Looking after yourself

• Flexible navigation• Talk: Introduce and lead• Images: Visual prompts• Videos: Case examples• Carers‘ comments• Pages to print• Links• Forum for sharing

German, French, EnglishTranslate language, cultural relevance, regional information

WP5 Multi-site Randomised Controlled Pilot Study Design

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Germany, France, UK

• Participants recruited N= 61 (E+G 20; F 21); 1 lost each site N= 58

• Principle carer• Alheimer‘s / Frontotemporal• Diagnosis within 3 years• Symptoms <65 years old

• Randomised control design• Online programme intervention• Usual information waiting list• Two 6-week phases• Open access phase• Three evaluation stages

Randomisation

Immediate Access to program

(Intervention)

Base-line Evaluation (wk 0)

Mid-point Evaluation (wk 6)

Final Evaluation (wk 12)

Wait-list Control (Standard care)

Prolonged access (extension phase)

Intervention Access to program

Group A Group B

WP5 Pilot Study Measures

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Measure B/line 6 wk 12 wk

User Satisfaction and Acceptability

Tech Acceptance Model (TAM) Usefulness, Ease of use, Intention to use, Computer self-efficacy.

- A B

Semi-structured interviews - A B

User behaviour web metrics - A B

Caregiver Wellbeing

Revised Scale for Care-giving Self-Efficacy (RSCSE)

A+B A+B A+B

Perceived Stress Scale (PSS) A+B A+B A+B

Burden Scale for Family Caregivers (BSFC) A+B A+B A+B

Revised Memory and Behaviour Checklist (RMBC) A+B A+B A+B

EQ-5D-5L A+B A+B A+B

Ref: Metcalfe, A., et al. "Online information and support for carers of people with young onset dementia: a multi-site randomised controlled pilot study." Int J Geriatr Psychiatr 2019.

WP5 Participant Characteristics

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Group A Group B

Caregiver Age, mean (SD) 57.6 (10.5) 57.2 (9.9)Caregiving years, mean (SD) 1.8 (1.1) 2.6 (1.7)Females [%] 60.0 61.3Higher education [%] 46.7 41.9Full/part time employment [%] 50.0 67.7Retired [%] 23.3 22.6

PwYOD Age, mean (SD) in years 61.6 (3.9) 61.9 (5.7)Females [%] 43.3 54.8Diagnosis AD / FTD [%] 56.7 / 43.3 64.5 / 35.5Years since diagnosis 1-2 / 3-4 / 5+ [%]

26.7 / 43.3 / 30 22.6/ 41.9 / 35.5

AD = Alzheimer’s FTD = Frontotemporal degeneration No statistical difference between Groups A and B

WP5 Quantitative Results

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Satisfaction / Acceptability Ratings (n=55)• 39 (70.9%) = v good/excellent; 51 (92.7%) = good/v good/excellent• 38 (69.1%) = info just right; 12 (21.8%) = too general; 5 (9.1%) too detailed

Quantitative measures (feasibility study, not powered for significance)The following reached statistical significance (with small effect size).• Perceived stress reduced: potentially relevant measure for future use.• Revised memory and behaviour checklist sub-scales: caregivers‘ reaction to

PwYODs‘ memory problems improved; also PwYODs‘ behavioural symptoms and total symptoms reduced (as reported by carer).

Delivery costs: minimum cost involved when there is no forum moderation.

Backend data analysis on program use • On average, participants accessed programme just over once a week (average of 7.5

visits over 6-week period).• Participants consulted about a third (31%) of overall content.• Approximately 60% of Group A logged on at least once during the extended period.

WP5 Qualitative Findings: Thematic Map summarising Two Key Themes

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Key Theme of Impact: On caregivers’ personal and practical responses

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• Identified with content: sense of belonging

• Reduced isolation: less alone with YD• Validated as opposed to

misunderstood• Better understanding and more

confidence• Reassurance: knowledge; previous

coping; symptoms relate to condition• Helpful for dealing with futureHowever, in some cases . . . • Concerned about future

• The focus on younger population is a strong point. (0204)

• A lot of the ways I had developed to cope and handle the situation were in fact the ones being suggested in the programme. (0107)

• Behaviours that had shocked and worried me before, they’re actuallynormal. That was reassuring. (0207)

• I received a lot of new information for example on the course of the disease. To some degree this was also information that I might have been afraid to ask for.

• Information for later on, because that’swhat most worrying, the future (0201)

Key Theme of Impact: On the caregivingrelationship

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• Better able to appreciate how the PwYD may experience situations

• Less irritable and annoyed whenresponding to PwYD, especiallywith challenging behaviour

• Patience results in calmer relationship

• Improved shared time together

• Finding explanations for things has helped … I am less irritated by themand him.

• [One of most helpful aspects was] information about how to diffuse situations when someone getsagitated. (0108)

• There is less conflict in ourrelationship. He is less anxious and I am less angry. (0207)

• I really liked the videos, for example the one with the dress. These improved my understanding of situations and can help to ensure situations do not escalate. (0310)

Key Theme of Impact: Caregives’ emotional responses to programme

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• Reduced general stress in responseto condition

• Sense of emotional support for carer (that is not available frommedical professionals)

• Reduced guilt about ownresponses; also when realisinghe/she is not causing adverse behaviour

• Professional programme addressed caregivers’ vulnerability

• Shocked by examples of advancedstages of condition

• Do not want to know about thishorrible disease

• I thought I was going mad. Was itme imagining the symptoms are really so bad? The behaviour? Phew! (0107)

• I am aware that my wife is there but I also need a sympathetic ear (0118)

• Relief and less guilt about the carer-patient relationship. (0204)

• [Seeing] people who know what theyare talking about [helps] … you are very vulnerable and needreassurance. (0103)

• Confrontation with future stage of illness was stressful. (022)

• Shock at lack of curative treatment. (0211)

Conclusions

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Limitations include small sample size and confounding variables, such as condition progression and changing circumstances over the trial period.

The study demonstrated that it is possible to evaluate the programme and that some instruments (measures) are relevant and easy to administer.

Results suggest that informal carers found online support and information acceptable and useful. It is also potentially inexpensive to deliver.

Qualitative data and feedback offer valuable guidance on refining the programme. The study highlights a need for implementation evaluation.

Consider implemtation options and relevance in care pathways.

Refine the video content and enhance technical features.

Results suggest that the programme is acceptabile and effective.

The RHAPSODY study group

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England: Heather Gage, Bridget Jones, Jan Oyebode, Wendy Parker; France: Sarah Boucault, Bruno Dubois, Thierry Hergueta, Anna Metcalfe; Germany: Markus Böhm, Sabine Jansen, Edith Keims, Alexander Komar, Alexander Kurz, Johannes Mayer, Katrina Milecka, Susanna Saxl, Helga Schneider-Schelte, Uta Schwertel, Albert Zollner; The Netherlands: Christian Bakker, Marjolein de Vugt, Raymond Koopmans, Joany Millenaar; Portugal: Helena Barrios, Catarina Ferreira, Maria Graça Melo, Tiago Mendes, Alexandre de Mendonça; Sweden: Petra Lilja Anderson, Anna-Karin Edberg, Caroline Graff, Anneli Orrung Wallin. Instituational affiliationsEngland: University of Surrey, School of Economics, Guldford, Surrey, United Kingdom; France: Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France; Germany: Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany; Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany; Information Multimedia Communication GmbH (IM-C), Saarbrücken, Germany; The Netherlands: School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands; Portugal: Institute opf Molecular Medicine and Faculty of Medicine, University of Lisbon, Portugal; Sweden: Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden; Department of Health and Society, Kristianstad University, Kristianstad, Sweden.The project is supported by following organisations under the aegis of JPND (www.jpnd.eu). France: National Research Agency; Germany: Ministry of Education and Research; The Netherlands: The Netherlands Organisation for Health Research and Development; Portugal: Foundation for Science and Technology; Sweden: The Swedish Research Council; United Kingdom: Economic and Social Research Council.

Thank you very much for your attention!

www.rhapsody-project.euinfo@rhapsody-project.eu

Project coordinator:Prof. Dr. Alexander Kurz (TUM)

RHAPSODY is an EU Joint Programme – Neurodegenerative Disease Research (JPND) project – www.jpnd.eu.

Dr Bridget Jones, Surrey Health Economics Centre, Dept of Clinical and Experimental Medicine, Leggett Building, Daphne Jackson Road, University of Surrey, Guildford GU2 7WG

b.e.jones@surrey.ac.uk

Reference: Metcalfe, A., et al. "Online information and support for carers of people with young onset dementia: a multi-site randomised controlled pilot study." Int J Geriatr Psychiatr 2019.