MND: The Psychological Journey Dr. Stephen Evans Neuropsychologist stephen.evans@stees.nhs.uk
Aims To discuss what psychology can offer individuals, family members and carers living with MND. The discuss the psychological process I follow when working with people affected by MND. To draw on a case example to highlight the process. To describe my vision for improved psychological practice in MND care.
To discuss what psychology can offer individuals, family members and carers living with MND What is psychology? Scientific understanding of the mind, cognition and behaviour. In clinical setting aim is typically to help individuals manage and improve mental health difficulties. Neuropsychology specifically focuses on helping individuals live with neurological problems (assessment and intervention).
Challenges MND is not a mental health condition. No well established models for working with MND. Little nationwide expertise in understanding the psychology of MND. Life limiting, highly distressing, significantly physically disabling. Cognitive sequalae improving but how is it useful in clinical practice? Uncertainty of outcome.
So what can we offer? Assessment (Neuro & general emotional wellbeing). Formulation (Shared understanding). Intervention (Focused on improving/tolerating distress). Evaluation (Has it worked?). The patient is always at the centre of our work
But what is the added value of psychology? Psychologists are highly trained to integrate different models of human behaviour to understand an individuals difficulties and we treat using different therapeutic models not a one size fits all approach. Our training focuses on whole life assessment, using individual and systemic approaches to improve patient quality of life. Our model is often called a scientific practitioner model this emphasises the use of research to drive knowledge and enact positive clinical change.
The psychological process As stated earlier there is no model per se for working with MND have to adapt other models (or create my own). Models of grief (Kubler Ross, 1969; Stroebe & Schut, 1999; Rubin, 1999). Question of stage models vs non-linear.
Acceptance and commitment Therapy (ACT) Third wave model of cognitively orientated therapies. Does not focus on fixing a faulty way of thinking, ACT is a non pathologizing way of conceptualising emotional distress. Complex to explain in detail but basic principles of the model focus on the following..
ACT (made simple.ish!) Acceptance Cognitive Defusion Being present Self as context Values Committed action
The psychological therapy process (or at least my perspective of it - assessment) Assess individual s perspective of their MND when, why, how, initial reactions, current feelings etc Assess the system in which the individual lives family support, work, history (medical, psychological). Consider cognitive issues. Family member/carer support or is the carer the patient? Look at personal resources & vulnerabilities. Anxiety/depression/normal reaction to an abnormal experience?
Formulation Develop a shared understanding of the individual s issues based on the assessment. Can be diagrammatic. Often verbal (to save time). Formulation drives intervention throughout this process it is important to consider which intervention will be best suited to the individual s situation. Chosen intervention can vary significantly. Can be model specific or generic.
Example non model specific verbal formulation Individual has stopped communicating with family following MND diagnosis (protecting self). Family are becoming worried and change the way they interact with the individual (support attempt). Individual picks up on this, which further causes reduced communication and increases frustration (rejecting/self protection). Family anxiety worsens (coping mechanism fails). Individual cuts off further (systemic cycle of distress).
Intervention ACT mindfulness, value compass, defusion exercises, commitment to value based goals (short term). Relaxation. Medication? Reflective space. Existential discussions. Behavioural activation. Cognitive rehabilitation? Family/systemic intervention.
Assessment Very difficult to assess outcome. Often hard to see how we have helped particularly if individual passes away. Family feedback helpful. Sometimes takes longer to see how psychology benefited individual.
Case example YD was a woman recently diagnosed with MND. Worked with children previously (was retired). Very pleasant woman. Full control of body, speech at start of therapy. Rapid deterioration over 6 months by the end had to use eye tracking technology to communicate.
Assessment Revealed strong social support from husband, good friendship group, closeness to extended family. Had previously enjoyed traveling, particularly by train, found it relaxing. Worried about symptom progression. Fears around death and dying. Found the loss of physical abilities very painful to comprehend. Had stopped engaging with activities for fear of worsening symptoms.
Formulation Understood difficulties in relation to grief and anxiety Vicious cycle of anxiety emerged, leading to reduced engagement with life, reduced confidence, playing it safe leading to increased anxiety. Lack of activities worsening mood and other symptoms reducing energy levels (counter-intuitive). Lost sense of values no value based committed actions. Lack of cognitive flexibility fixed on thoughts and fears around death and loss of physical ability.
Intervention Existential discussions metaphors (traveling, life s journeys). Encouraged to > activity levels. Identified values: travel, family, socialising linked this to activity levels; looked at ways to live a value congruent life despite physical limitations of the condition. Mindfulness exercises for YD and her husband both reported finding them useful. Encouraged to connect with family while still well enough to do so.
Outcome/evaluatioin YD became physically unable to talk and we were unable to have traditional therapy we started to try to use eye tracking technology but this proved difficult as the technology was slow, and therefore natural back and forth communication was reduced. We agreed to taker a short break in therapy and while I was waiting fore her to practice with the kit before resuming our work together she sadly passed away. How does one evaluate the success of the work when this is the outcome?
Reflections/response to case Grief we cannot avoid this as practitioners we develop a bond with our patients. Frustration could I have done more?, if only the technology was better Uncertainly was the intervention useful how will I ever know? But some time later YD s husband sent a message stating that YD had greatly appreciated and benefitted from our work together and had found it comforting at a dark time.
Future work for psychology Help others stare at the sun working with MND inevitable means facing our own mortality this is very difficult for some people and needs specialist support and guidance high levels of distress (can lead to burnout and depressions). Develop specific MND related psychosocial interventions that are evidence based. Develop a useful way of implementing cognitive testing as a means to educate and intervene not just for research purposes. Develop evidence based family and systemic interventions.
Support staff, carers and volunteers to improve working practice within MND help others learn psychological approaches. Develop a psychological care pathway that can be applied nationally (needs evidence base and expertise). Develop meaningful outcome measures (not just anxiety/grief measures). Integrate psychological care with other disciplines (silo working is almost always less useful than MDT approach).
Current research Have a doctoral trainee looking at coping style and quality of life in individuals and carers with MND specifically interested in the interaction between carer coping and the individual diagnosed with MND. Putting forward a qualitative study looking at the lived exercise of caring for an individual with FTD-MND. More research is needed and I am always open to collaboration.
Thanks for listening Any questions?