The Art Gallery Access Programme for People with Dementia: “You do it for the moment”

The Art Gallery Access Programme for People with Dementia:“You do it for the moment” Aged Care Evaluation Unit, NSW Greater Southern Area Health Service and DSDC, Bangor University Mike Bird, Katrina Anderson, Sarah MacPherson, Terri Davis, & Annaliese Blair

Rationale • Dementia is often associated with reduced independence and quality of life, reduced opportunity for social contact and activity. • There is a paucity of meaningful activity available to this population • Programmes which are available often underestimate the remaining abilities of people with dementia, and offer little intellectual stimulation or sense of achievement.

Aim • Take people with dementia to the National Gallery of Australia (NGA), and thereby provide a higher level sensory and intellectual level activity than is normally available • Evaluate the programme to determine whether participants with dementia could significantly engage with and enjoy the activity, and also benefit over the longer term • Include people with more severe dementia

The Art Gallery Programme • Training provided for NGA educators • Six visits to the NGA for four separate groups, at the same time each week • Groups run 45 - 60 minutes, and have around four participants per group, and the same two educators • Discussion each week on around four artworks from the Australian collection • Participants sit on a bench in front of the picture with staff out of line of sight, so participants only interact with the artwork and educator • NGA stays open

Participant Characteristics Some significant behaviour problems (e.g., aggression and social isolation) Carers report moderate to severe stress.

Measures of Programme Effectiveness Focus groups: Measure of experiences and perceptions of people involved in the project Behavioural analysis: Groups were filmed and participant behaviour analysed – examined for range of behaviours indicative of engagement and enjoyment

Analysing the DVDs Adapted ideas from standardised emotional rating scales, e.g. Affect Rating Scale (1996), Emotional Reactions in Care Scale (2005) Used discrete behaviours to infer emotional state and degree of engagement during 1st and last session Used time-sampling methods rather than watch entire DVD

Examples of observed behaviours Laughing Talking to Educator Listening to other participants (e.g. clearly turned towards them, nodding, actively listening Animation (e.g. Gesticulating when talking about artwork) Sustained discussion ‘Going into the picture’ Anxiety/agitation (e.g. looking worried, fidgeting) Affection – physical (e.g. Hand on another, embrace) Withdrawn (e.g. Looking away, turning away) Sad

Behavioural Categories Observational data was subsumed into 4 behavioural categories: • Very Engaged (e.g. laughing in discussion of artwork, gesticulating, leaning towards another participant to hear them better); • Engaged (e.g. showing interest in educator, looking at artwork); • Neutral (unclassifiable behaviour e.g. blowing nose); • Negative (e.g. fidgeting, looking away).

Mean proportion of behavioural observations (Community participants)

Mean proportion of behavioural observations (RACF participants)

Focus Groups: Residential care (n=7) • Sketchy, intermittent, or no memory of visiting the NGA, despite strong cues, including: • Presence of educators • Pictures of themselves at the gallery • Impoverished discussion However… • Somewhat able to discriminate between paintings they had seen and not seen • In future, use this as an evaluation technique, and have focus groups in the gallery

Focus Groups: Community participants All had conscious memory of the experience, (some requiring prompting) including specific events Main theme: enjoyment of the programme It was such a buzz! It just wasn’t long enough I wish it was going on you know – I enjoyed it so much

Normalisation A whole – just another world It made me feel a bit intelligent We did achieve something out of it. Isn’t it good? At least we can do something worthwhile. Facilitator: Do you mean the Educators were making allowances for the fact you had dementia? Participant: I don’t think so, not for me. Participant 2: I never felt that at all.

About the educators, having dementia, and the programme Lovely, lovely girls. They were great! They explained things or just let us tell them things Can’t get the words out, that’s my big big trouble. But they were the shepherd. Sometimes I would like to say what I would like to….and they would say: Was that..? People won’t speak for fear of…people think you’re a fool. You open your mouth and they’ll know We sort of think about the things we can’t do but [the programme] aims to show you can still do something

Social aspects It got me sort of getting out there, having to see more people.

Community carers It was really enjoyment and of course I think he just loved going. To be with the group and talking together We now go to the gallery often and I mean he would point out the things he’d seen…or know he’s seen it before and he would discuss it. That was a positive thing. That’s the first time she really stood out in a conversation and it surprised us. She took over. She took over for a couple of minutes. And what she said (about the picture) was all sensible – it made a lot of sense.

Focus groups: Educators It was just a joy. Almost anything was possible What hit me was how diverse they all were.... They lit up when the bus pulled up. Once they came into the space and remembered where they were they resumed where they left off last week. They didn’t recognise me in the nursing home but when the bus came they did. All her art background came back. She started talking about the composition and perspective and colour.

Educators: Confidence and skill We became better at judging, the style of discussion that you carry on with one person compared with another. We became confident in how we spoke to them You lost trepidation and learnt to just play along – we could actually make it flow better by going with the flow …Just letting go of those inhibition in regular conversations and learning to relax with silence I think just slowing it down. We all learnt early on just to slow down. Allow sitting in silence. And knowing that something will come but, you know it feels quite uncomfortable initially but…

Educators: Changed professional practice And the most amazing sensitive comments that we’ve not heard before even though we work with the same paintings for years. For me it was very enlightening because I now approach things quite differently for many of the other age groups You know we’re concentrating on knowledge and intellectual rigour. Where this is a more sensual and experiential relationship to the painting ‘The control thing!...Yeah. When you’re giving facts you’re in control. But here, instead of this direct role up the front, you’re quieter. You are more a listener than a speaker.

Did the programme produce lasting change No evidence of enduring change (except, implicitly, in participants learning they can do more than they thought) No change in behaviour problems ‘You do it for the moment’ The problem of excess disability

Excess disability When people with impairment are more disabled than they need be Can be caused by: Illness, discomfort, unaddressed sensory deficits Too much care (‘over-protective care) Absence of care (e.g. limited social interaction) So … you’d be chatting along and forgetting that they have dementia

Excess disability I was amazed how flat they were (in the nursing home). When at the gallery they’re excited, hyped up. They respond, whereas it was impossible to get them to respond ‘When we had some carers there at the last programme, each of the participants tended to refer back to their carers and they weren’t as spontaneous. When [carers were absent] their confidence changed, people became more vocal.’ ‘When XX came in with his family…We had gone for tea with him and the group before and they had got their own tea and we didn’t take much notice…when his daughter was there she took over his feeding…’

Conclusion The programme went beyond many dementia activities No evidence for lasting effects Programme continues at the NGA and elsewhere in Australia

Acknowledgements The people with dementia and their carers who took part National Gallery of Australia, especially, Adriane, Arthur, Fran, Kate, Maria-Helena, Penny, Peter, Sally and Tess The Tudor Foundation, who funded the project Alzheimer’s Association Australia Marily Cintra and John Zeisel St Andrews Village and Eabrai Lodge

The Art Gallery Access Programme for People with Dementia: “You do it for the moment”