Dialectical behaviour Therapy for People with a Learning Disability: An overview Dr Lesley Leeds Senior Clinical Psychologist Learning Disability Services Betsi Cadwaladr University Health Board

Plan The problem How did we get a service going? What is DBT How can DBT be useful for people with learning disabilities? Adapting and using DBT Experiential teaching – some adapted skills on managing affect – just say CHEESE

The Problem & Context Historically: Who actually gets any treatment? People with learning disabilities (and those working in services) excluded from research and practice Limited evidence base for psychological interventions Limited access to psychological therapies Who actually gets any treatment? Can these treatments really work?

There is a clinical problem out there…. Placement breakdown Out of county placements Complex case list Staff burnout Competence issues Cost to organisation Cost to individual and their family

Every CLDT has people with complex emotional and behavioural problems Some will end up with PD diagnosis or have traits of PD What do we do to help them (and those around them)? Doubly untreatable? (double jeopardy problems) Revolving door individuals (social workers, nurses, doctors, therapists)

Who has heard this? People with PD are: Untreatable Manipulative Attention-seeking Selfish Draining “There’s not much we can do to help” “I don’t know how to help that person” “These PD people are nothing but a drain on resources” “I don’t like to work with people like that” “It’s not within my skill base”

There are often assumptions that PWLD should somehow be more skilful And wouldn’t be behaving like this if they didn’t have a learning disability!! Not true! It is their learning and life experience that has led to the problems…

The first day of the psychology career… OMG!!! Rapid intro to PD and heavy duty problems Marsha Linehan became my bedtime reading.. Desire to work ‘psychologically’ Long and winding road…

A chance to do something proper.. Opportunities for DBT training in 2011 A small team formed (n = 4) Audit across BCUHB – yes the cases are out there Management approval (no mean feat) Adapted materials (no mean feat either) Started delivering skills training in Jan 2012 The start of a small but strong service……

Current position Competence and confidence One established DBT team Delivering DBT in one community setting ‘Seeding out’ of other teams

The near future Current Ongoing service development in BCUHB to bring equity in services Further staff training in 2014 Increasing access to Psychological Therapies in North Wales for people with learning disabilities

UK Position There are only 3 other community DBT teams in UK specific to LD (British Isles DBT data)

So, what’s the big deal about DBT?

Dialectical Behaviour Therapy: in a nutshell... Designed to address severe and persistent problem behaviours; that arise due to emotional and behavioural difficulties experienced by an individual. DBT focuses on the acceptance and changing of problematic thoughts, feelings and behaviours. The person is encouraged to believe and make changes to build a life a worth living. DBT can help treat self harm, suicide, violence, non compliance, substance abuse, food issues, severe emotional difficulties and post traumatic stress.

Where does this treatment come from? DBT was originally used for the treatment of women diagnosed with Borderline Personality Disorder, that engaged in self harming and suicidal behaviours. DBT was initially used in community settings, now is being implemented in inpatient and forensic settings. DBT originated from the Bio-Social Theory of personality functioning Building evidence base in LD 10 DBT treatment teams in LD services in UK (in and outpatient)

A note on the biosocial theory Biological propensity some… Temperament Invalidation or Abuse all? Emotional layer of skin missing – everything little thing burns - sensitivity

Philosophy of DBT DBT is: Dialectical Supportive Cognitive Behavioural Skill orientated Balances acceptance and change Requires a collaborative relationship All the features of a therapy well suited to people with learning disabilities

Aims of DBT Behaviours to decrease Behaviours to increase DBT aims to decrease extreme emotions, thinking and behaviours into more balanced responses to current situations. DBT teaches clients to develop and refine skills in order to change problematic behavioural, emotional and thinking patterns that are causing misery and distress. Behaviours to decrease Behaviours to increase Self dysregulation Core mindfulness skills Interpersonal dysregulation Interpersonal effectiveness skills Emotional dysregulation Emotional regulation skills Behavioural and cognitive dysregulation Distress tolerance skills Facilitator to highlight that DBT has more specific goals: DBT aims to decrease ineffective behaviours and increase more effective behaviours by focusing on four main skills. DBT aims to reduce impulsive and mood dependant behaviours, by increasing patients core mindfulness skills. This involves the patient’s participating in every day life with awareness and attention. DBT aims to decrease problems that arise in interactions with others by increasing the patient’s interpersonal effectiveness skills. This involves the patients developing skills to effectively develop and maintain relationships with others and achieve their objectives in situations more effectively. DBT aims to reduce problems that result from emotional mismanagement by increasing the patient’s emotional regulation skills. This involves the patients developing skills so that they can manage their emotions more effectively. DBT aims to reduce problematic thinking and behaviour which arises due to the patient’s difficulty of tolerating current emotional distress. Patients are encouraged to develop distress tolerance skills. This involves the patient developing skills that enable them to accept life as it is at the moment and tolerate emotional pain or distress associated with life crises. 18

Four Main DBT Skills Core Mindfulness: Teaches attention to the present moment and self awareness. Helps people be in control of their mind, be aware of their thoughts and feelings at any one time, and think things through properly before acting. Interpersonal Effectiveness: Teaches interpersonal skills, to help deal with conflict situations and to get on with others, get what you want in a way that maintains self respect and build and keep effective relationships with others. Emotional Regulation: Teaches how to identify and describe emotions, how to reduce vulnerability to negative emotions and how to increase positive emotions. Distress Tolerance: Teaches strategies of how to tolerate distress, without engaging in impulsive and self destructive behaviours. Focuses on distraction and self soothing techniques, and strategies to radically accept traumatic events in their lives.

How is our DBT programme made up? Individual Therapy Focus on analysis of (and decrease) problem behaviours, increase effective coping skills, focus on motivational issues and work towards defined treatment goals. Weekly hourly sessions Skills Training Group Teaching of behavioural skills to increase capability Weekly sessions for two hours for one year Consultation Meeting Supervision for therapists to support their practice A community of therapists treating a group of individuals Support Worker skill strengthening Support workers attend group and reinforce and praise skill use out of sessions In lieu of telephone out of hours service Facilitator to highlight the DBT programme is made up with a number of treatment components and in order for a DBT programme to exist it must include all these things. Individual therapy: Therapist also focuses on personal and environmental factors which inhibit the use of effective behaviours and reinforce maladaptive behaviours. Skills training group: All patients are to attend individual sessions with their DBT therapist before starting skills training group. Patients are expected to attend the group as soon as possible, and at the same time continue having weekly individual sessions. The structure of the sessions is delivered in adherence with the DBT skills training manual. Ward based skills coaching: This involves ward staff being trained in order to provide DBT patients with instructions and feedback on the implementation of all DBT skills. Training will be offered to allow staff to fulfil this role. Consultation meeting: All therapists that either deliver skills group or individual therapy sessions attend the meeting. DBT Awareness training will also be shortly provided on the wards. 20

Why is DBT useful for people with learning disabilities? On an individual level: A life saving and life enhancement treatment Validates the person’s difficulties Teaches people skills to cope with and change a range of problem behaviours Enhances capability Teaches people to accept things that cannot be changed

Why is DBT useful for people with learning disabilities? On a team level: Teaches the staff on the ground to model, encourage and praise appropriate skills Gives a framework for professionals to cope with problem behaviours Change in attitude about treatability

Why is DBT useful for people with learning disabilities? On a strategic level: Costs the organisation less money Keeps people in their community placement (and often out of hospital) Increases workforce capability

Adapting this treatment for our clients DBT is a complex model for therapists and clients alike Essential to make it accessible for those with learning disabilities For more information, contact me directly on Lesley.Leeds@wales.nhs.uk

Doesn’t this just dilute the treatment? The core model and principals are the same What good is any therapy if the client has no idea what you are talking about?!! No matter how fancy it seems

Using and adapting DBT for people with Learning Disabilities The experiential bit

Core DBT skills Emotional regulation Mindfulness Interpersonal effectiveness Emotional regulation Distress tolerance Reducing vulnerability to emotion mind

Reducing vulnerability to emotion mind Sounds easy…..but we all fail at this from time to time

How many of us have: Shouted at someone else when tired? Been grumpy because you missed lunch? Not functioned well because you were ill? Got hacked off because you were bored? Felt that you were no good at something?

We are all vulnerable to emotion mind When you have emotional sensitivity and problems coping, this happens a lot more to you

Cool Mind Calm Mind Hot Mind So, what is emotion mind (or what we call Hot Mind?) Cool Mind Calm Mind Hot Mind

Hot Mind/Emotion Mind Hot Mind – this is when your emotions take control – when your emotions are in charge of your thinking and how you behave. This is the problem bit for all of us!!

When you feel the emotion, but it does not take over In an ideal world…we would be here When you feel the emotion, but it does not take over Cool Mind Calm Mind Hot Mind

Reducing vulnerability to emotion mind Staying out of ‘Hot Mind’ Remember: say CHEESE The annoying thing is that it’s easy for things to send us into hot mind. Who here feels that they are more emotional than other people or feel their emotions more strongly or react more quickly? When we are stressed (explain) we are more likely to be emotionally reactive. Use this session for people to plan what changes they will make day-to-day?? Things that we can do across the week to reduce out vulnerability. CHEESE – each letter is like a clue to help you remember all the different things that might help you. Give everyone a workbook so that they can develop an individualised plan. 34

This comes from PLEASE MASTER emotional regulation skills (Linehan, 1993) Treat PhysicaL illness Balance Eating Avoid mood-Altering drugs Balance Sleep Get Exercise Build mastery – try to do one thing a day to make yourself feel competent and in control

For people with intellectual issues …not user friendly Even we could not remember this easily!

Staying out of ‘Hot Mind’ C = ‘Can Do’ Every day do something you ‘can do’ - something you’re good at Does it ever feel like there are lots of things that you can’t do? If get to the end of a day and feel like we’ve not done anything well how do we feel? – link to self-esteem stuff (confidence, sense of purpose, other people praising us – link to depression). Also thoughts about ourselves and others – positive or negative. Ask everyone for something they’re good at. 37

Staying out of ‘Hot Mind’ H = Health Take care of your body See a doctor if you are ill Take your medication Avoid drugs and alcohol Why do we think that being healthy helps us not to get into hot mind? – pain, tiredness, worry, when our body and brain are healthy can cope better with stress. How do we take care of our body? – food, sleep, rest, exercise, right clothing (temperature), being kind to our bodies and not hurting them – if busy healing then can’t be dealing with other stress. Impact of drugs and alcohol (government guidelines – check bottles and cans for alcohol units) 38

Staying out of ‘Hot Mind’ E = Eating Eat the right amount of food Avoid ‘emotion’ foods See next slide 39

Staying out of ‘Hot Mind’ Impact of a restricted diet, poor diet, impact of different foods, government guidelines for food intake…what our body needs to stay healthy and stress-resistant. 40

Staying out of ‘Hot Mind’ E = Exercise Do some exercise everyday. Who loves exercise? If yes – what do you do? If no – why not? Exercise releases feel good chemicals in the body, helps fight depression, feel fit and strong, can do more things, feel better in your clothes, builds self-esteem. Look at solutions, e.g. If boring/don’t like it/can’t do it – discuss choosing something that you enjoy or you won’t stick to it (watch for judgements about performance/ability/being observed) If too hard/ache afterwards – discuss intensity of exercise (not training to be Olympic athletes) – need mild to moderate exercise – exercise that makes you a bit warm or sweaty and slightly out of breath, e.g. a brisk walk where you could still hold a conversation. If takes too long/don’t have time – government recommendations = 30 minutes of exercise 5 times per week (doesn’t have to be 30 minutes all in one go – can be 3 x 10 minutes – it all adds up) Generate a list of exercise (inc. work, chores, running up and down stairs, a walk round the block) What’s a good way of making sure you do enough? (link to self-management difficulties) – planning (weekly diary) 41

Staying out of ‘Hot Mind’ S = Sleep Get the right amount of sleep. Who has trouble with sleeping? Who feels great the next day if they’ve not slept all night? (more irritable, less patience with others, can’t concentrate, get angry more easily, make more mistakes). Can be different types of problems – getting off to sleep, staying asleep all through the night, or waking up too early. Discuss sleep hygiene (worksheet in workbook). 42

Staying out of ‘Hot Mind’ E = Enjoy Do something everyday that you enjoy Link to after effects of emotions, if have fun, laugh, etc feel good for a while afterwards, fights depression, And be mindful of experiences. Might have to plan fun things to do – sometimes want things to be fun and then feel that they’re not – watch expectations – be right here right now otherwise might not get enjoyment from an enjoyable event. 43

Staying out of ‘Hot Mind’ Remember: say CHEESE Ask what each letter stands for. 44

Of all the DBT skills taught.. This is the one the clients remember and use the most Such basic, yet important skills

DBT has been a valid and useful intervention for people with mild LD in North Wales Reductions in: Self harm/suicidal behaviours Aggression/threatening behaviours Over-eating Seriously destabilising behaviours Hospital admissions Increase in: Client capability Staff capability Placement duration Availability of psychological therapies for PWLD

The long and winding road

Thanks for listening Questions?