Singing (and other arts/cultural activities) across the Dementias Paul Camic Professor of psychology & public health Salomons Centre, Canterbury Christ Church University Tunbridge Wells campus and Co-director, Created Out of Mind, Wellcome Collection, London

Why the arts and Health? Evolutionary importance Ethological evidence Culturally relevant across all societies Everyone can participate

My fantasied headline from the Daily Mail : The arts exposed as Key part of EU plot to take over dementia care for families

And from the BBC… Breaking News: Scientific discovery—the arts are a good thing for the dementias!

The arts across dementia care Singing and music Making and viewing visual art Writing poetry Handling museum and other material objects Dancing

How might the arts impact the dementias? And why? Emotionally connecting: Stimulating and relaxing activities Allows learning to occur (even in later stage dementias) Focuses attention on a sound, movement, texture, colour, word, action Increases verbal and visual fluency ‘in the moment’ of the activity Memory associations (but let’s not make reminiscence the focus) Solo & Social: Individual, dyad and group possibilities

And why? more than a feel good experience… Moderators Mediators For whom and in what circumstances are X arts effective? Stage and type of dementia Art form Affects direction or strength between Independent & Dependent variables Mechanisms of change: what occurs between input and output within the individual? What causes/creates change? What type of change are we looking for?

Singing and Music making Later stages of dementias (residential) Earlier-Middle stages of dementias (home & day care) Community, charity and NHS venues Age range: 40-90, 45/50% M/F Groups (some with caregivers) Mostly time limited (one offs-8 sessions) A range of music styles from sea shanties to classical and everything in between Mostly choruses, some with rounders, a few volunteer solos Private, charity and authority based Age range: 64-92; 60% F Groups and one on one Time limited (4-10 sessions) More likely to involve musical instruments Range of music styles, tends to be easy listening and classical Some conducting/leading

An international forum United Kingdom Canada Australia Finland Sweden USA France Germany Israel Belgium The Netherlands

Data collection (1 of 3) Psychological measures: Quality of Life (e.g. QoL-AD, Dem-QoL-4, Dem-QoL-proxy, WHOQoL) Wellbeing (e.g. Canterbury Wellbeing Scales, CWS) Activities of daily living (e.g. Bristol ADLS) Mood, including depression and anxiety (e.g. DASS) Caregiver burden (e.g. Zarit Burden Interview, ZBI) Remote episodic memory, short-term memory (e.g. usual neuropsych tests)

Data collection (2 of 3) Physiological measures Stress hormones (e.g. cortisol, cortisone, testosterone, progesterone, DHEA) for pre-post measurement using saliva assays Variable heart rate (HRV), body temperature, physical movement, skin conductance) for process (ongoing measurement) using Empatica-4 wrist monitors

Data collection (3 of 3) Qualitative approaches Thematic analysis Grounded theory (including visual grounded theory) Visual analysis (particularly useful with more impaired people) Conversational and discourse analyses Participatory action research (PAR) Situational analysis (in progress)

Ingredients for success: What we know so far… Community-based Residential-based Trained facilitator/conductor Supportive, welcoming, kind Volunteers to help out Live music whenever possible Ongoing is ideal (no one offs); if not possible, sessional groups (e.g. 8-10 sessions) 60-90 minutes; include refreshments and time to socialise A range of music from easier to challenging over time Consider public performances Groups: trained facilitator/conductor Supportive, welcoming, kind and understanding of more impaired singers Live music if possible; Involve care staff in the sessions (beneficial for them too) 6-8 weeks, 45-60 minutes per week Groups: musical instruments for all (percussion, simple stings) Individuals: one-on-one live singing; iPods; roaming musicians

What might be achieved? Community-based Residential-based Increases in subjective wellbeing for both PWD and caregivers Increased QoL for caregivers Feeling socially included Having a ‘normalising’ experience Experience of learning and being supportively challenged Improved mood, short term memory Reduced stigma Music for Life (group approach) Joint resident-staff participation in a non-caregiving activity Engaging residents and staff in a co- creative experience (e.g. Music for Life approach) Engagement of residents via attunement and direct interaction One-on-one approach Reduce challenging behaviours Increase desirable behaviours Provide different ways to interact for staff

Going forward…community-based Consider the importance of ‘in the moment’ subjective wellbeing and subjective stress variables as session-to-session outcome measures Easily measured with visual analogue scales (VAS) Measure longer term outcome in public health rather than customary psychological variables (reducing stigma and social isolation, producing community resources, cross-generational activities)

Going forward…residential settings A choir in every care home for those with and without a dementia Involve but do not require staff, from the manager to the cleaners to be part of the singing group Encourage and train staff who already like to sing to use singing as part of routine care Partner with local colleges and universities for internships Music, social work, nursing and psychology departments Encourage families to participate from time to time in monthly community concerts, even for 15-20 minutes per concert

Resources Created Out of Mind, Wellcome Collection, London: www.createdoutofmind.org Free online 4 week course: Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives: https://www.futurelearn.com/courses/dementia-arts Open access journal article: Conceptualising and Understanding Artistic Creativity in the Dementias: Interdisciplinary Approaches to Research and Practise: https://www.frontiersin.org/articles/10.3389/fpsyg.2018.018 42/full