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Acceptance and Commitment
Therapy for People with MS
MS Trust Annual Conference 4th November 2013
Dr Sarah Gillanders

Dr David Gillanders

MS Specialist Clinical
Neuropsychologist

Doctoral Programme in Clinical
Psychology

NHS Lothian (Edinburgh)

University of Edinburgh
What do people struggle with
when they have MS?
• At the beginning…
• During a relapse
• During remission
• Transition…
• End of life and
afterwards for loved
ones
And what do they tend to do in
response to these struggles?
• Figure it out /
problem solve
• Control / get rid /
reduce
• Fight it

• Avoid it / hide
What‟s the cost?
• These are the natural logical things to do
and sometimes they are helpful
• But sometimes these efforts can make life
harder
• A real alternative…
Acceptance
• Not – resigned, tolerating, giving in,
defeated, not a state or a stage
• Acceptare “To take in what is offered”
• A choice.
• A behaviour, moment to moment….
Values
• Compass metaphor
• Directions versus destinations
• Qualities of action

• Available now….
When to use your mind and
when to lose your mind…
• Amazing problem solvers
• A really useful tool
• Who‟s using who?

• Noticing being hooked into ineffective
problem solving
Mindfulness
• Bringing flexible attention to the here and
now
• Noticing the ebb and
flow of experience
• Giving greater capacity
to choose actions
Acceptance and Commitment
Therapy
• ACT is a form of cognitive behavioural
therapy that focuses on how we live with
difficult things

• Blends behaviourism, mindfulness, values,
compassion and perspective taking.
• Uses eyes closed exercises, meditation
strategies, metaphors
Goals of ACT
• The main goal of ACT is workability
• By increasing psychological flexibility
• The ability to be present to here and now
and to change or persist with behaviour
when doing so serves valued ends.
The ACT Model of Inflexibility
Dominance of
Past & Future

Lack of clarity or
contact with
Values

Experiential
avoidance

Psychological
inflexibility
Inaction,
impulsivity or
avoidant
persistence

Cognitive Fusion

Attachment to the
self „story‟
The Positive Psychological Processes ACT Seeks
to Strengthen
Being in the
present moment
Acceptance /
Willingness
Psychological
Flexibility

Clarity &
Contact with
Values

Committed
Actions

Defusion

Flexible Self
MS and Families
• MS doesn‟t only affect the individual
• We can combine ACT with a couples
orientation
• This can help the couple / family to
respond more flexibly to the challenges of
MS
A Case example: Jane and Howard
• 62 year old female, transitioned to secondary
progressive MS ~12 months ago
Wheelchair dependent, no functional use of
upper limbs
Married to husband for 35 years
He has chronic health problems
He doesn‟t want additional carers in the house
Relationship strain
Outline of sessions
• Session 1 and 2: Jane alone
–
–
–
–
–
–
–
–
–

History of MS and current stage of illness
Main presenting symptoms: biopsychosocial understanding
Current stressors
Psychological history (childhood onwards)
Family structure
Typical day
Goals for intervention
Discussion about potential intervention
Measures: AAQ-II, HADS

–
–
–
–

What problem(s) would she like help with?
Thoughts, feelings, physiological sensations and urges
What has she tried to deal with these problems?
Did they work?
• Session 3: Howard alone
– How is Jane‟s MS is impacting on the family?
•
•
•
•

–
–
–
–
–

Typical day
Practical impact
Impact on each individual
Impact on relationship

What strategies do they use?
Workability
Current stressors
His well-being
His goals

– Discussed couples work
ACT Case Formulation Template
Self-reported complaints
Jane

Howard

Both

Frustrated by MS
Feels disempowered
Wants more involvement
with household tasks
Lack of intimacy with her
husband
Would like greater
connection with family
Lost role as a grandmother
Trauma from childhood
abuse

Feels overwhelmed by
caring
Wants to be supportive but
feels the need to keep on
top of things
Own chronic health
problems

Poor communication
What private events are they struggling with?
Thoughts/beliefs

Emotions/feelings

Physiological sensations

I ought to be able to cope
independently
I shouldn‟t need to depend
on others
I am a burden

Sad
Loss
Disempowered

Tension

I ought to be caring for my
husband

Disappointed
Loss of role as wife

Jane

Howard
I have to cope

Burden
Responsibility
Stress

Both

We are a patient and
carer, not a husband and
wife

Resignation
Disconnected
Lonely

Exacerbation of bowel
condition
What do they typically do (or have done in the past) when these private events
come up?
What they do

What they
hope will
happen

Actual shortterm
consequences

Actual longterm
consequences

Workability

Doesn't tell
people what she
wants or how
she feels

Feel less of a
burden
Avoid upsetting
others
Feels able to
cope alone

Avoids
emotional
conversations
Avoids feeling
like a burden

Feels alone and
isolated
Misunderstood
Needs not met
Disconnected
from those
around her

Low

Comments on
what husband is
doing around
the house

Become more
involved in
running the
house
Regain previous
role
Feel more
empowered

Husband feels
undermined
Irritated that
things aren‟t
done her way
Nipping at each
other

Friction in the
relationship
Communication
style that is
critical and
frustrating
Disconnection
between the
couple

Low
What do they typically do (or have done in the past) when these private events
come up?
What they do

What they
hope will
happen

Actual shortterm
consequences

Actual longterm
consequences

Workability

Focus on
practical tasks

Keep on top of
caring and
household tasks

Completes tasks
in his own way
Friction between
couple

Jane doesn‟t
feel involved
Allows them to
avoid dealing
with emotional
issues (health
problems,
relationship
strain)

Medium

Go about
individual
activities

Not add to each
others stress
Avoids
confronting
difficulties

Feel that not
burdening each
other
Avoids
confronting
difficulties

Lonely
Disconnected
Problems
continue
unaddressed

Low
If this wasn’t such a struggle for them how would life be different, what could they
do?
Valued life area

Specific goals

What gets in the way

Better communication

To sit together after breakfast
Make joint decisions

Prior communication style
Feeling too busy
Feeling that a burden

Greater intimacy

To sit together
To listen, be patient and to care
To hold hands

Furniture
Feeling disconnected
Time

To feel more connected
to children

To speak to children about MS
To answer their questions openly
in the future

Belief that ought to deal
with problems alone
Private person

Shared roles as
housekeepers

To discuss household tasks each
week
To read through correspondence
and answer jointly

Time – the need for
Howard to do a lot
Cognitive slowing and
memory problems
What ACT processes underpin or drive the unworkable strategies?
Experiental
avoidance

Cognitive
fusion

Dominance of
conceptualised
past or future

Attachment
to the
conceptual
self

Lack of
contact
with values

Avoidance /
Inaction

Withdraw

I am to
I am not the
blame for my person I used to
symptoms
be

This is how
relationships
turn out
I must deal
with things
alone
I must hold
everything
together
I am
vulnerable
You need
deal with
things alone

Focus is on
practical
tasks

Doesn‟t ask
for things or
share
thoughts

Tell self „this
is just how it
is‟
I just need to „you make your
do the
bed you lie in it‟
practical
stuff
I will do what
I think is
best
I am not in
control
Other people
don‟t want to
know about
your
problems

Just does
tasks without
asking
Busy self with
practical
tasks
How much creative hopelessness needs to be emphasised with this couple?
Both aware that there are problems with their current strategies, but Howard in particular
finds it difficult to generate alternative solutions
A sense that „we need to hold it together‟, that they are vulnerable and fearful of change

What aspects of their context may undermine or support the work?
Small care package contributing to carer strain
Both have chronic health problems and mild cognitive impairments
Jane: childhood abuse and a sense of needing to cope alone
• Sessions 4-6: Jane and Howard
–
–
–
–

Better communication
Examined current communication style
Considered workability
Discussed what was driving their communication style (history, a
desire to be effective, frustration etc)
Metaphor: Passengers on the bus
• Metaphor: Leaves on the stream

• Exercise: mindfulness
– We spoke about their values: how they would like to
communicate with one another and what qualities
they would like to bring to their relationship. They both
said to listen more, to be attentive and to be calm
– Used this interactional style through the sessions
Both pragmatic and there was evidence of mild cognitive
difficulties. We made some practical recommendations, which
linked with Jane‟s goal of feeling more involved with household
tasks:
•To sit together after breakfast
•To sit with Jane at her bedside
•To discuss correspondence each week and to jointly plan
what to address and how
•To avoiding nipping
•To meal plan together
•To be more open about what they need and how they feel

Exercise: Sailing boat metaphor
Outcome
• Communication had improved
• Jane less frustrated by MS
• Felt that their relationship was much stronger

• Both felt happier
• Both remain quite private people
• Better insight into relationship dynamics
• More able to pause and step back from conflict
and stress and chose a direction and behaviour

• Intimacy hadn‟t changed but they were happy
with their relationship and neither wanted to
address this at this time
• Scores on AAQ-II hadn‟t changed significantly. Although
Jane reported a number of improvements, she still felt
troubled and controlled by memories from her childhood
June 2013

October 2013

AAQ-II

34/49

39/49

HADS Anxiety

13 (moderate)

9 (mild)

HADS
Depression

9 (mild)

6 (normal)

• Conclusion: remains at risk of mood deteriorating if
unaddressed

• Plan: individual sessions to help her live more flexibly
with the past
Ways you might begin to
incorporate ACT strategies
• Help clients examine what works and what
doesn‟t
• Help them let go of what is not working,
even if they think it should be working
• When setting goals – do it with a values
perspective
Ways you might begin to
incorporate ACT strategies
• Use the word willingness instead of
acceptance
• Think of willing as a choice in each
moment
• Notice „mental time travelling‟ and gently
come back to here and now.
Ways you might begin to
incorporate ACT strategies
• Cultivate the present moment
• Appreciation for small and simple things
• Develop a sense of when to use the mind
and when to lose the mind
Ways you might begin to
incorporate ACT strategies
• Instead of modifying thoughts, try
renegotiating „the deal‟ you have with
them.

• Flexible ways of living values in small
steps
• Slow down, get in the moment, make room
and lean in
ACT applies to all of us
• The same language traps apply to all of us
• We can use willingness, mindfulness,
values and commitment to be more
present in our work (and at home)…
• It can be transformative, if you want it to
be…..
Next steps
• Reading
• Other training
• Join ACBS: www.contextualscience.org

Check out my training page above – forms,
diaries, metaphors, audio exercises, slides
Thank you for listening
sarah.gillanders@nhslothian.scot.nhs.uk
david.gillanders@ed.ac.uk

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Acceptance and Commitment Therapy for People with MS

  • 1. Acceptance and Commitment Therapy for People with MS MS Trust Annual Conference 4th November 2013 Dr Sarah Gillanders Dr David Gillanders MS Specialist Clinical Neuropsychologist Doctoral Programme in Clinical Psychology NHS Lothian (Edinburgh) University of Edinburgh
  • 2. What do people struggle with when they have MS? • At the beginning… • During a relapse • During remission • Transition… • End of life and afterwards for loved ones
  • 3. And what do they tend to do in response to these struggles? • Figure it out / problem solve • Control / get rid / reduce • Fight it • Avoid it / hide
  • 4. What‟s the cost? • These are the natural logical things to do and sometimes they are helpful • But sometimes these efforts can make life harder • A real alternative…
  • 5. Acceptance • Not – resigned, tolerating, giving in, defeated, not a state or a stage • Acceptare “To take in what is offered” • A choice. • A behaviour, moment to moment….
  • 6. Values • Compass metaphor • Directions versus destinations • Qualities of action • Available now….
  • 7. When to use your mind and when to lose your mind… • Amazing problem solvers • A really useful tool • Who‟s using who? • Noticing being hooked into ineffective problem solving
  • 8. Mindfulness • Bringing flexible attention to the here and now • Noticing the ebb and flow of experience • Giving greater capacity to choose actions
  • 9. Acceptance and Commitment Therapy • ACT is a form of cognitive behavioural therapy that focuses on how we live with difficult things • Blends behaviourism, mindfulness, values, compassion and perspective taking. • Uses eyes closed exercises, meditation strategies, metaphors
  • 10. Goals of ACT • The main goal of ACT is workability • By increasing psychological flexibility • The ability to be present to here and now and to change or persist with behaviour when doing so serves valued ends.
  • 11. The ACT Model of Inflexibility Dominance of Past & Future Lack of clarity or contact with Values Experiential avoidance Psychological inflexibility Inaction, impulsivity or avoidant persistence Cognitive Fusion Attachment to the self „story‟
  • 12. The Positive Psychological Processes ACT Seeks to Strengthen Being in the present moment Acceptance / Willingness Psychological Flexibility Clarity & Contact with Values Committed Actions Defusion Flexible Self
  • 13. MS and Families • MS doesn‟t only affect the individual • We can combine ACT with a couples orientation • This can help the couple / family to respond more flexibly to the challenges of MS
  • 14. A Case example: Jane and Howard • 62 year old female, transitioned to secondary progressive MS ~12 months ago Wheelchair dependent, no functional use of upper limbs Married to husband for 35 years He has chronic health problems He doesn‟t want additional carers in the house Relationship strain
  • 15. Outline of sessions • Session 1 and 2: Jane alone – – – – – – – – – History of MS and current stage of illness Main presenting symptoms: biopsychosocial understanding Current stressors Psychological history (childhood onwards) Family structure Typical day Goals for intervention Discussion about potential intervention Measures: AAQ-II, HADS – – – – What problem(s) would she like help with? Thoughts, feelings, physiological sensations and urges What has she tried to deal with these problems? Did they work?
  • 16. • Session 3: Howard alone – How is Jane‟s MS is impacting on the family? • • • • – – – – – Typical day Practical impact Impact on each individual Impact on relationship What strategies do they use? Workability Current stressors His well-being His goals – Discussed couples work
  • 17. ACT Case Formulation Template Self-reported complaints Jane Howard Both Frustrated by MS Feels disempowered Wants more involvement with household tasks Lack of intimacy with her husband Would like greater connection with family Lost role as a grandmother Trauma from childhood abuse Feels overwhelmed by caring Wants to be supportive but feels the need to keep on top of things Own chronic health problems Poor communication
  • 18. What private events are they struggling with? Thoughts/beliefs Emotions/feelings Physiological sensations I ought to be able to cope independently I shouldn‟t need to depend on others I am a burden Sad Loss Disempowered Tension I ought to be caring for my husband Disappointed Loss of role as wife Jane Howard I have to cope Burden Responsibility Stress Both We are a patient and carer, not a husband and wife Resignation Disconnected Lonely Exacerbation of bowel condition
  • 19. What do they typically do (or have done in the past) when these private events come up? What they do What they hope will happen Actual shortterm consequences Actual longterm consequences Workability Doesn't tell people what she wants or how she feels Feel less of a burden Avoid upsetting others Feels able to cope alone Avoids emotional conversations Avoids feeling like a burden Feels alone and isolated Misunderstood Needs not met Disconnected from those around her Low Comments on what husband is doing around the house Become more involved in running the house Regain previous role Feel more empowered Husband feels undermined Irritated that things aren‟t done her way Nipping at each other Friction in the relationship Communication style that is critical and frustrating Disconnection between the couple Low
  • 20. What do they typically do (or have done in the past) when these private events come up? What they do What they hope will happen Actual shortterm consequences Actual longterm consequences Workability Focus on practical tasks Keep on top of caring and household tasks Completes tasks in his own way Friction between couple Jane doesn‟t feel involved Allows them to avoid dealing with emotional issues (health problems, relationship strain) Medium Go about individual activities Not add to each others stress Avoids confronting difficulties Feel that not burdening each other Avoids confronting difficulties Lonely Disconnected Problems continue unaddressed Low
  • 21. If this wasn’t such a struggle for them how would life be different, what could they do? Valued life area Specific goals What gets in the way Better communication To sit together after breakfast Make joint decisions Prior communication style Feeling too busy Feeling that a burden Greater intimacy To sit together To listen, be patient and to care To hold hands Furniture Feeling disconnected Time To feel more connected to children To speak to children about MS To answer their questions openly in the future Belief that ought to deal with problems alone Private person Shared roles as housekeepers To discuss household tasks each week To read through correspondence and answer jointly Time – the need for Howard to do a lot Cognitive slowing and memory problems
  • 22. What ACT processes underpin or drive the unworkable strategies? Experiental avoidance Cognitive fusion Dominance of conceptualised past or future Attachment to the conceptual self Lack of contact with values Avoidance / Inaction Withdraw I am to I am not the blame for my person I used to symptoms be This is how relationships turn out I must deal with things alone I must hold everything together I am vulnerable You need deal with things alone Focus is on practical tasks Doesn‟t ask for things or share thoughts Tell self „this is just how it is‟ I just need to „you make your do the bed you lie in it‟ practical stuff I will do what I think is best I am not in control Other people don‟t want to know about your problems Just does tasks without asking Busy self with practical tasks
  • 23. How much creative hopelessness needs to be emphasised with this couple? Both aware that there are problems with their current strategies, but Howard in particular finds it difficult to generate alternative solutions A sense that „we need to hold it together‟, that they are vulnerable and fearful of change What aspects of their context may undermine or support the work? Small care package contributing to carer strain Both have chronic health problems and mild cognitive impairments Jane: childhood abuse and a sense of needing to cope alone
  • 24. • Sessions 4-6: Jane and Howard – – – – Better communication Examined current communication style Considered workability Discussed what was driving their communication style (history, a desire to be effective, frustration etc) Metaphor: Passengers on the bus
  • 25. • Metaphor: Leaves on the stream • Exercise: mindfulness
  • 26. – We spoke about their values: how they would like to communicate with one another and what qualities they would like to bring to their relationship. They both said to listen more, to be attentive and to be calm – Used this interactional style through the sessions
  • 27. Both pragmatic and there was evidence of mild cognitive difficulties. We made some practical recommendations, which linked with Jane‟s goal of feeling more involved with household tasks: •To sit together after breakfast •To sit with Jane at her bedside •To discuss correspondence each week and to jointly plan what to address and how •To avoiding nipping •To meal plan together •To be more open about what they need and how they feel Exercise: Sailing boat metaphor
  • 28. Outcome • Communication had improved • Jane less frustrated by MS • Felt that their relationship was much stronger • Both felt happier • Both remain quite private people
  • 29. • Better insight into relationship dynamics • More able to pause and step back from conflict and stress and chose a direction and behaviour • Intimacy hadn‟t changed but they were happy with their relationship and neither wanted to address this at this time
  • 30. • Scores on AAQ-II hadn‟t changed significantly. Although Jane reported a number of improvements, she still felt troubled and controlled by memories from her childhood June 2013 October 2013 AAQ-II 34/49 39/49 HADS Anxiety 13 (moderate) 9 (mild) HADS Depression 9 (mild) 6 (normal) • Conclusion: remains at risk of mood deteriorating if unaddressed • Plan: individual sessions to help her live more flexibly with the past
  • 31. Ways you might begin to incorporate ACT strategies • Help clients examine what works and what doesn‟t • Help them let go of what is not working, even if they think it should be working • When setting goals – do it with a values perspective
  • 32. Ways you might begin to incorporate ACT strategies • Use the word willingness instead of acceptance • Think of willing as a choice in each moment • Notice „mental time travelling‟ and gently come back to here and now.
  • 33. Ways you might begin to incorporate ACT strategies • Cultivate the present moment • Appreciation for small and simple things • Develop a sense of when to use the mind and when to lose the mind
  • 34. Ways you might begin to incorporate ACT strategies • Instead of modifying thoughts, try renegotiating „the deal‟ you have with them. • Flexible ways of living values in small steps • Slow down, get in the moment, make room and lean in
  • 35. ACT applies to all of us • The same language traps apply to all of us • We can use willingness, mindfulness, values and commitment to be more present in our work (and at home)… • It can be transformative, if you want it to be…..
  • 36. Next steps • Reading • Other training • Join ACBS: www.contextualscience.org Check out my training page above – forms, diaries, metaphors, audio exercises, slides
  • 37. Thank you for listening sarah.gillanders@nhslothian.scot.nhs.uk david.gillanders@ed.ac.uk

Editor's Notes

  1. In this slide, greater intimacy and feeling more connected with the adult children are typically phrased as values. The other two are a little more goal like – they can be achieved. The shared role as housekeepers one is really about successfully managing their role as housekeepers. This is not necessarily something you need to change but people may think of values in terms of family, relationships, citizenship, parenting, spirituality so they may ask you to clarify or explain why these are values in the left column.