Musician and Dementia An overview literature study on Music and Dementia from a musician’s point-of-view Krista Pyykönen NAIP European Master of Music The Royal College of Music in Stockholm

The Literature Zeisel, J. (2009) The Literature Zeisel, J. (2009). I’m still here: Creating a better life for a loved one living with Alzheimer’s. London: Piatkus. Kitwood, T. (1997). Dementia reconsidered: The person comes first. Berkshire: Open University Press. Garrett, P. (2009). Can Music for Life enhance the well-being of people with dementia and develop the person-centered care skills of care workers?. MSc Dissertation: University of Bradford.

Aim and Focus Collect data on a musician’s role in dementia-related music-workshops Find out how to apply the information to Music&Dementia-module My pre-understanding: flexible instrumental skills, inter-personal skills Values and ethics (VIPS): The absolute value of a human lives regardless of age or cognitive ability Individualized approach, recognising uniqueness Understanding the world from the perspective of the service user Providing a social environment that supports psychological needs

Central Themes following Garrett’s division Musical/Artistic Engagement Well-being Ill-being Person-centered care Applied themes: Dementia as an experience and phenomenon Communication & Interaction

What are we talking about? Putting it into numbers: In Europe, 5 million people are living with Alzheimer’s. Worldwide number of Alzheimer’s is 50 million. (Zeisel, 2010) A unique experience Psychological coping skills Steps: grief – denial – anger – depression – acceptance Sense memories, emotional memories, body memories, art memories, song memories and skill memories last the longest Positive effects: increased creativity and emotionality

Person-centered care Understanding and caring for people’s unique personhood Understanding that dementia doesn’t destroy personhood Building communication, relationships, identity and meeting psycho-sosio-cognitive needs Aiming to reduce agitation, anxiety, apathy or aggression Increasing the quality of life, joy Helping people to maintain their dignity, independence and self-respect

Musical/Artistic Engagement Music helps identifying emotions, telling stories, linking it to people’s own lives Music links together separate brain locations and activates the emotional memory The instinctual abilities of understanding music are not lost New relationships, quality of life, joy, increased self-esteem are found Music interventions ease depression, aggression, communication, irritability and interaction Zeisel: people with Alzheimer’s are freer, more honest and more expressive than most others  openess for musical engagement

Well-being Respecting the uniqueness of a personal history: culture, gender, temperament, lifestyle, outlook, beliefs, values, interests Appreciating the capabilities and abilities of the person and seeing the person through the illness Employing as many non-pharmacological treatments as pharmaceutical ones Maintaining personhood and individuality Living in the present moment - Being present Supporting the existential feeling of the present

LOVE Comfort Occupation Identity Attachment Inclusion Following Kitwood: Figure 5.2

Psychological Need for Love Gray-Davidson (Kitwood): “To give generous, forgiving, unconditional acceptance, a whole-hearted emotional giving without expectations” Comfort: tenderness, closeness, calming and soothing, security, warmth Attachment: responding to the instinct-like need of forming bonds Inclusion: understanding the need to be part of a group, understanding “attention-seeking behavior”, clinging, protests etc. Occupation: helping to be involved in a process in a way that is personally significant Identity: supporting the cognition and feeling of know who one is

Positive ways of interaction Hear and respond to the other person’s reality Be present Be honest Be calm Introduce yourself clearly Always address the person directly Use friendly body-language: smile, eye-contact Do as little as possible for a person Use all senses: also touch Find a person’s unique way of self-expression Involve all participants Negotiate: ask and listen Collaborate: involve the person’s abilities Play: encourage to self-expression Facilitate: enable to take part and try Validate: acknowledge the reality of a person’s feelings Positivity: create a positive experience Ease anxiety Ask one question at a time Speak slowly and give time Watch for non-verbal expressions Let the person decide the topic of conversation Avoid slang, but use words that relate Don’t test the person Don’t say ”don’t”, butredirect instead Don’t react, but respond Don’t approach the person in a child-like way Don’t jugde Don’t project your own feelings or insecurities

Ill-being Interaction promoting ill-being: Failing to recognize the attempts of interaction, being over-cognitive instead of sensitive, withdrawing too early from interaction, rushing the interaction Judging by symptoms Dementia-related ill-being: Feelings (situation-related): fear, sense of weirdness, panic, grief, anger, sadness, anxiety, sense of being excluded or imprisoned. Global States (general): terror, misery, rage, chaos “Burnt-out” States (permanent): despair, depression, vegetation, exhaustion, apathy The four A’s of Alzheimer’s: Apathy, Aggression, Agitation, Anxiety.

The Musician - Who? Motivation Attitudes Interaction skills Interpretation skills in non-verbal communication Empathy Psychological stability: no projections towards the person Garrett: Effects on the Musician (Music for Life)

Support Demands Musician’s Personal Resources Organizational Support Debriefing Counseling/Mentoring Two-way communication Stress management Psychological preparation Output Following Kitwood’s figure

The musician’s well-being applied from Kitwood’s organization manual Induction Teambuilding, the importance of team Supervision Training, psychological preparation Individual development Reward