The RHAPSODY study Bridget Jones PhD, CPsychol, Health Psychologist on behalf The Rhapsody Study Group Key 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 Multidisciplinary research collaboration to 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 2
5 Workpackages Background Research Pilot study Programme development Carers‘ perspectives Policies and information Project management Disseminate Findings Future Focus: Revise, translate 3
WP3 Carers‘ Perspectives on requirements of programme Why and how to get help • Focus groups in all Early recognition • 6 countries Social, financial, legal issues • Understanding language and cognition • Responding to behavioural changes • 2 groups each country: Interpersonal problems Over 80 carers • Medical perspective • Looking after yourself • Causes of YOD • 4
WP4 Programme Development Carer‘s Guide for Young-Onset Dementia Prof of Psychiatry, Clinical Psychologists, Health Psychologist, Program Developers Introduction Flexible navigation • • What is YOD Talk: Introduce and lead • • Medical perspective Images: Visual prompts • • Problems and solutions Videos: Case examples • • Challenging behaviour Carers‘ comments • • Family issues Pages to print • • How to get help Links • • Looking after yourself Forum for sharing • • German, French, English Translate language, cultural relevance, regional information 5
WP5 Multi-site Randomised Controlled Pilot Study Design Germany, France, UK Base-line Evaluation (wk 0) Participants recruited N= 61 (E+G 20; • F 21); 1 lost each site N= 58 Randomisation Group A Group B Principle carer • Alheimer‘s / Frontotemporal • Immediate Access to Wait-list Control Diagnosis within 3 years • program (Standard care) (Intervention) Symptoms <65 years old • Randomised control design Mid-point Evaluation (wk 6) • Online programme intervention • Usual information waiting list Prolonged access Intervention • ( extension phase) Access to program Two 6-week phases • Open access phase • Three evaluation stages • Final Evaluation (wk 12) 6
WP5 Pilot Study Measures Measure B/line 6 wk 12 wk Tech Acceptance Model (TAM) Usefulness, Ease of User - A B Satisfaction use, Intention to use, Computer self-efficacy. and Semi-structured interviews - A B Acceptability User behaviour web metrics - A B Caregiver Revised Scale for Care-giving Self-Efficacy A+B A+B A+B Wellbeing (RSCSE) 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 7 onset dementia: a multi-site randomised controlled pilot study." Int J Geriatr Psychiatr 2019.
WP5 Participant Characteristics 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 61.3 Higher education [%] 46.7 41.9 Full/part time employment [%] 50.0 67.7 Retired [%] 23.3 22.6 Age, mean (SD) in years 61.6 (3.9) 61.9 (5.7) PwYOD Females [%] 43.3 54.8 Diagnosis AD / FTD [%] 56.7 / 43.3 64.5 / 35.5 Years since diagnosis 26.7 / 43.3 / 30 22.6/ 41.9 / 35.5 1-2 / 3-4 / 5+ [%] AD = Alzheimer’s FTD = Frontotemporal degeneration No statistical difference between Groups A and B 8
WP5 Quantitative Results 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 • 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. • 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. 9
WP5 Qualitative Findings: Thematic Map summarising Two Key Themes 10
Key Theme of Impact: On caregivers’ personal and practical responses The focus on younger population is a • Identified with content: sense of • strong point. (0204) belonging A lot of the ways I had developed to • Reduced isolation: less alone with YD • cope and handle the situation were in fact the ones being suggested in the Validated as opposed to • programme. (0107) misunderstood Behaviours that had shocked and • Better understanding and more • worried me before, they’re actually confidence normal. That was reassuring. (0207) Reassurance: knowledge; previous I received a lot of new information for • • example on the course of the disease. coping; symptoms relate to condition To some degree this was also Helpful for dealing with future information that I might have been • afraid to ask for. However, in some cases . . . Information for later on, because that’s • Concerned about future what most worrying, the future (0201) • 11
Key Theme of Impact: On the caregiving relationship Finding explanations for things has Better able to appreciate how the • • helped … I am less irritated by them PwYD may experience situations and him. Less irritable and annoyed when • [One of most helpful aspects was] • responding to PwYD, especially information about how to diffuse with challenging behaviour situations when someone gets agitated. (0108) Patience results in calmer • There is less conflict in our relationship • relationship. He is less anxious and I Improved shared time together 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) 12
Key Theme of Impact: Caregives’ emotional responses to programme Reduced general stress in response I thought I was going mad. Was it • • to condition me imagining the symptoms are really so bad? The behaviour? Phew! Sense of emotional support for • (0107) carer (that is not available from medical professionals) I am aware that my wife is there but • I also need a sympathetic ear (0118) Reduced guilt about own • responses; also when realising Relief and less guilt about the carer- • he/she is not causing adverse patient relationship. (0204) behaviour [Seeing] people who know what they • Professional programme are talking about [helps] … you are • addressed caregivers’ vulnerability very vulnerable and need reassurance. (0103) Shocked by examples of advanced • stages of condition Confrontation with future stage of • illness was stressful. (022) Do not want to know about this • horrible disease Shock at lack of curative treatment. • (0211) 13
Conclusions 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 the programme is acceptabile and effective. Results suggest that informal carers found online support and information acceptable and useful. It is also potentially inexpensive to deliver. Refine the video content and enhance technical features. 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. 14
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