Aideen Gibson

1. Facilitating People living with a dementia and Their Families to engage in personalised reminiscence supported by an iPad app – A quasi-experimental Study Dr Liz Laird, Ulster University

2. ProfAssumpta Ryan Chief Investigator Nursing Dr Liz laird Nursing Prof Maurice Mulvenna Computing Prof Kevin Curran Computing Dr Claire McCauley Prof Brendan Bunting Psychology Dr Finola Ferry Psychology Aideen Gibson

3. Reminiscence is a widely used therapeutic approach for people living with dementia. • No overall therapeutic effect from Group-based reminiscence, in three RCTs (Amieva et al., 2016; Charlesworth et al., 2016; Woods et al., 2016). • When reminiscence materials and memory prompts are individual specific, immediate and longer-term psychosocial benefits can result (Subramaniam & Woods, 2012). • Background

4. Aim: to investigate the impact of individual specific reminiscence facilitated through the use of a tablet device among people living with dementia and their family carers. • The InspireD Study • Individual Specific Reminiscence in Dementia

5. A feasibility study utilising a quasi-experimental design. • Participants (people living with a dementia and their family carers) received a programme of training in reminiscence and training in the use of a novel co-created iPad app to reminisce. The training was delivered in their own homes. • Following training, they engaged in reminiscence activity at home for a three month period. Data were collection at baseline, mid-point and end-point.Statistical analysis was used in an appraisal of outcomes • Design

6. Phase 1: Co-creation, refinement and testing of the software with a User Development Group of volunteers from the Alzheimer's Society Home Support Network Phase 2: Implementation of the intervention (Training and use of the InspireDApp) in the homes of people living with dementia, with comparison of outcomes at different time points using questionnaires and rating scales Phase 3: Individual interviews with a sample of participants (n=32). • Three phases:

7. Why? To develop an App to electronically collect and store personal memorabilia • Who? A User Development Group of people living with dementia and their family carers (n=12) • When? The app was developed, refined and tested in 4 workshops over a 3-month period • How? The InspireD App provides an interface for people to • view photographs • listen to music • record and watch video clips • Phase 1 - Co-creation and Design Process

8. Functionality determined by User Development Group • iPad chosen over other tablet devices - screen size and brightness • The colour of interface, font size, amount of text, position of icons, and choice of symbols to improve usability • IT support, carer involvement and convenience, all key factors • Standard IT Usability Testing was found to be inappropriate • Phase 1: Results

9. An App for iPad and android tablets. • Home based • Technology-facilitated reminsicence • Individual specific • Early to moderate dementia • Welcome to The InspireD App

10. Thirty dyads (n=60) recruited from Western Health and Social Care Trust: • Community Mental Health and Older People Team/Cognitive Rehabilitation Team OTs • Dementia Nurse Specialist • Alzheimer’s Society • Phase 2: Recruitment

11. Five reminiscence training sessions, with each dyad, by a Reminiscence Facilitator from Reminiscence Network NI. • Supported the identification, selection, and sharing of memories which had specific significancefor participants • Focused on relationshipse.g. occupations, family, shared interests and shared events Participants received an iPad with the InspireDApp. The IT Assistant guided them in uploading memorabilia and using InspireD (3 sessions) and provided ongoing support. Participants were guided to use ‘InspireD at least 3times/per week in the following 3 months. • Phase 2: Intervention

12. Thirty dyads were recruited as planned. • Age range of PLWD was 61 - 94 years, mean 79 years, median 80 years. • Age range of carers was significantly lower (31 - 91 years), mean 67 years and median 66 years (P < .001). • The majority of PLWD (n=20; 67%) were men. • The majority of carers (n=24; 80%) were women. • Phase 2: Results

13. Tracking data: Number of interactions in each of the multimedia reminiscence features

14. Primary outcome measure • The Mutuality Scale (Archbold et al. 1990) Secondary outcome measures • The WHO-5 Well-being index (Bach et al. 2003) • Quality of the Carer-Patient Relationship (QCPR) (Spruytte et al. 2002) • EQ-5D-cost effectiveness analysis • DEMQOL-dementia specific quality of life measure • Client Services Inventory Receipt (CSRI) • Phase 2: Outcome Measures

15. Primary Outcome Measure The Mutuality Scale (Archbold et al., 1990) Defined as the positive quality of the relationship between caregiver and care receiver (Archbold et al. 1990). 15 items that ask about the relationship between a caregiver and care receiver, to which respondents reply using a five-point scale ranging from 0 (not at all) to 4 (a great deal). Higher scores indicate higher mutuality, which may support relationships in difficult circumstances. High Cronbach’s alpha values in studies of family caregiving.

16. Secondary Outcome Measures WHO-5 Well-Being Index (Bech et al., 2003) Five questions that tap into the subjective well-being of participants Extensively tested for validity and reliability. Quality of the Carer Patient Relationship(Spruytte et al., 2002) 14-item scale measuring relationship quality, including level of warmth and level of criticism. Good internal consistency for carers and for people living with dementia, and concurrent validity with other measures of relationship quality and carer stress.

17. Results: Primary Outcome Measure • Mutuality scores across time

18. Results: ScondaryOutcome Measure (1) • WHO-5 scores across time

19. Results: Secondary Outcome Measure (2) • Quality of Care-giving relationship across time

20. Aim Explore participants’ views on the intervention Method Individual interviews with people living with dementia (n=15) and their family carers (n=17) Analysis Braun and Clarke’s (2006) Six-phased Method of Analysis • Phase 3 - Interviews

21. Usability- “It’s part of my life now” • Revisiting the Past - “Memories that are important to me” • Home Use - “It was homely” • Gains and Abilities – “There is still so much inside” • Impact on the Person Living with Dementia - “It helped me find myself again” • Impact on relationships - “It’s become very close” • Phase 3: Findings: • Six key themes

22. Usability- “It’s part of my life now” “It’s a part of my life now. It was something that I never thought that I could use” (Karen, wife) “I think it’s wonderful because it’s so small and so compact. It looks good and everything is stored in there, all the information that you want ...” (Peter, person living with dementia) Revisiting the Past - “Memories that are important to me” “What we’ve done, where we’ve been, where we’ve lived… Well, it’s nice to think that he could remember them.” (Molly, wife)

23. Home Use - “It was homely” “the fact that you’re just being where you normally are… In surroundings which was totally familiar to you” (Wesley, person living with dementia) Gains and Abilities – “There is still so much inside” “The training on the app was the turning point for me” (Joe, person living with dementia). “You feel you’re losing her completely and then during the project you’re thinking my God, you know, there's still so much inside that head still” (James, husband)

24. Impact on the Person Living with Dementia - “It helped me find myself again” ”It makes me feel that I have everything on it that I really need, and it makes me feel better in myself that I can lift it, and use. Since taking part, it has, kind of, levelled everything out, you know” (Margaret, person living with dementia) Impact on relationships - “It’s become very close” “I would be closer to my mother, not so anxious in some ways. You can actually stop and do a different type of thing instead of thinking of things like medication, what’s going to happen. It’s more an ‘in the moment’ type of experience” (Amanda, daughter) “it’s become very, very close because you don’t have to try and bring a subject up on your own, you just open the iPad and things happen” (Angela, wife)

25. The i-PAD enabled an easy way to photograph or video the present, to keep today’s memories alive • Using the iPad to Skype chat with family living abroad • The unanticipated

26. People living with dementia used the app more frequently than carers. Statistically significant increases in mutuality, quality of caregiving relationships, and emotional well-being from baseline to endpoint for people living with dementia (Laird et al., 2018). Among carers, increases in mutuality and quality of caregiving relationship from baseline to endpoint, and a decrease in emotional wellbeing scores were not statistically significant (Laird et al., 2018). The intervention was a positive experience which focused on gains rather than losses, in contexts of memory retention, learning new skills and developing closer relationships (Ryan et al., 2018). • Summary

27. People living with mild to moderate dementia and their carers can be supported to engage with digital technology. • Age is no barrier to acquisition of IT skills. • A programme of training and individual specific reminiscence supported by an iPad app may be able to deliver positive impacts in the context of early to moderate dementia, without significant negative impact on carers. • A randomised controlled trial of home delivered individual specific reminiscence is warranted. • Conclusions

28. Amieva H, Robert PH, Grandoulier A-S, Meillon C, DeRotrou J et al. (2016) Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial. International Psychogeriatrics, 28 (5); 707-717. • Archbold PG, Stewart BJ, Greenlick MR, Harvath T (1990) Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health. 13, 375-84. • Bech P, Olsen L, Kjoller M, Rasmussen NK (2003) Measuring well-being rather than the absence of distress symptoms: a comparison of the SF-36 Mental Health subscale and the WHO-Five Well-Being Scale. Methods Psychiat Res. 12, 85-91. • Charlesworth G, Burnell K, Crellin N, Hoare Z, Hoe J, Knapp M, Russell I, Wenborn J, Woods B, Orrell M (2016) Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial. J Neurol, Neurosurg Psychiatry, doi:10.1136/jnnp-2016-313736. • Laird EA, Ryan AA, McCauley C, Bond RB, Mulvenna MD, Curran KJ, Bunting B, Ferry F, Gibson A (2018) Using Mobile Technology to Provide Personalized Reminiscence for People living with Dementia and Their Carers: Appraisal of Outcomes From a Quasi-Experimental Study. JMIR Ment Health 2018;5(3):e57. • References

29. Ryan AA, McCauley C, Laird EA, Gibson A, Mulvenna MD, Bond RB, Bunting B, Curran KJ, Ferry F, (2018) There is still so much inside’: The impact of personalised reminiscence, facilitated by a tablet device, on people living with mild to moderate dementia and their family carers. Dementia, doi.org/10.1177/1471301218795242 • Spruytte N1, Van Audenhove C, Lammertyn F, Storms G. (2002) The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients. PsycholPsychother. 2002 Sep;75(Pt 3):295-311. • SubramaniamP, Woods B (2012) The impact of individual reminiscence therapy for people with dementia: systematic review. Expert Review of Neurotherapeutics, 12 (5); 545-555. • Woods RT, OrrellM, Bruce E, et al (2016) REMCARE: pragmatic multi-centre randomised trial of reminiscence groups for people with dementia and their family carers: effectiveness and economic analysis. PLoSOne;11:e0152843. • References

30. The Participants • Reminiscence Network Northern Ireland and Reminiscence Facilitators • The Community Mental Health Team for Older People and Cognitive Rehabilitation Team • Foyle Branch of the Alzheimer’s Society Home Support Network and Alzheimer’s Society Dementia Cafes • PHA R&D Division and Atlantic Philanthropies for funding the study and Gail Johnston, Programme Manager for ongoing support. • Project Steering Group • Acknowledgements

31. Thank You & Questions ea.laird@ulster.ac.uk School of Nursing Ulster University