1. Psychological Flexibility in People with Progressive Neurological Conditions and their Significant Others
Multiple Sclerosis
Dr Sarah Gillanders
MS Specialist Clinical Neuropsychologist
NHS Lothian (Edinburgh)

2. Loss of closeness and intimacy
Change from equal partners to patient-carer
Symptoms Reduced mobility, impaired cognition, fatigue, pain, incontinence
Changes in self-identity Capable, independent, healthy, strong, a provider
Impact of MS
Uncertainty
Withdraw from others
Avoid certain situations
Resentment, jealousy
Go out less, struggle to maintain employment, avoid intimacy
Anxiety
Loss of hobbies, work, income, impact on relationships
Sadness, loss, depression

3. Clinical examples
35 year old female, diagnosed with relapsing remitting multiple sclerosis six months ago
Married for 18 months
No children
Not sure about whether to try for a family
Progressing quickly in a successful career
Wants to remain in work for as long as possible
Does not want colleagues to know
Afraid of the future

4. Wheelchair dependent, no functional use of upper limbs
62 year old female, transitioned to secondary progressive MS ~ three years 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

5. Outline of sessions Session 1 and 2: Jane alone
Standard neuropsychological assessment
History of MS and current stage of illness
Main presenting symptoms
Other stressors
Psychological history (childhood onwards)
Family structure
Goals

6. Session 3: Howard alone How is Jane’s MS is impacting on the family?
Typical day & practical impact
Impact on relationship and wider family
What strategies do they use?
Workability
His well-being
His goals
Discussed couples work

7. ACT Case Formulation Template
Self-reported complaints
Jane
Howard
Both
Frustrated by MS
Feels disempowered
Lack of intimacy with her husband
Lost role as a grandmother
Trauma from childhood abuse
Feels overwhelmed by caring
Feels the need to keep on top of things
Chronic health problems
Poor communication

8. What private events are they struggling with? Thoughts/beliefs
Emotions/feelings
Physiological sensations
Jane
Howard
Both
I ought to be able to cope independently
I shouldn’t need to depend on others
I am a burden
I ought to be caring for my husband
Sad
Loss
Disempowered
Disappointed
Loss of role as wife
Tension
Burden
Responsibility
Stress
Exacerbation of bowel condition
I have to cope
We are a patient and carer, not a husband and wife
Resignation
Disconnected
Lonely

9. What do they do when these private events come up?
What they do
What they hope will happen
Actual short-term consequences
Actual long-term 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 others
Low

10. What do they do when these private events come up?
What they do
What they hope will happen
Actual short-term consequences
Actual long-term 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

11. To sit together after breakfast Make joint decisions
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
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.

12. Sessions 4-6: Jane and Howard
Better communication and greater connection
Examined current communication style
Considered workability
Discussed what was driving their communication style (history, a desire to be effective, frustration etc)

13. Both pragmatic and evidence of mild cognitive difficulties
Both pragmatic and evidence of mild cognitive difficulties. We made some practical commitments:
To sit together after breakfast
For Howard to sit with Jane at her bedside
To discuss correspondence each week
To avoiding nipping
To be more open about what they need and how they feel
Sailing boat metaphor

14. Mindfulness
Leaves on the stream
Passengers on the bus

15. Outcome Communication had improved Jane less frustrated by MS
Felt that their relationship was much stronger
Both felt happier

16. 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

17. Conclusion: remains at risk of mood deteriorating if unaddressed
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
Conclusion: remains at risk of mood deteriorating if unaddressed
Ongoing: individual sessions to help her live more flexibly with the past
June 2013
October 2013
AAQ-II
34/49
39/49
HADS Anxiety
13 (moderate)
9 (mild)
HADS Depression
6 (normal)