Fatigue management

1. Fatigue management Dr Nina McLoughlin Senior Clinical Psychologist / Neuropsychologist Burwood Brain Injury Rehabilitation Service (BIRS, Ward CG) Burwood Hospital

2. Overview • This session is based on practical techniques that I use with my clients everyday • Used in an inpatient and outpatient setting with clients with brain injury • Stroke • TBI • Degenerative neurological conditions • Other Neurological conditions (e.g. meningitis)

3. Before we start • Personal opinion – sleep should be the first intervention point • Poor sleep will impact on day time fatigue • Improved sleep will have a positive effect on a range of factors • Cognitive abilities • Mood • Motivation • Day time energy levels….

4. Impact of fatigue • The vast majority of stroke patients will experience some level of fatigue • Fatigue is linked with mental health and engagement in rehabilitation • Fatigue is on a continuum of experience

5. The impact of fatigue • Client A: • Right Middle Cerebral Artery (MCA) Stroke • Inpatient and then community follow up • Professional position that he was keen to return to • Lack of insight into difficulties • Showing him his reproduction of a design at the end of testing • Not taking his 1 hour rests • Focuses on increasing hours • Getting back into running to pass a fitness tests (which was optional) • A close family member passed away and took on full responsibility of managing their estate

6. Neuropsychological re-assessment • Scores significantly poorer than last session • Looked fatigued • Experienced physical symptoms: • Cramp – muscle spasm – reduced functioning down left side – mild confusion • Admitted to ED • CT imaging and EEG

7. Diagnosis • Significant fatigue

8. Preparing the client • Fatigue management is not easy but can be achieved • It takes time • Its about management not a cure • Take time to build up a therapeutic alliance • Without this you have nothing • Everyone is different so the client needs to: • Agree that there is a problem • Explore their own fatigue threshold in and out of therapy • Understand what activities fatigue them and the ones that don’t

9. Fatigue is a perception • It is not just about energy in and out • How we view an activity is also important

10. Advice to patients • Any change in life circumstances requires adjustment • Leaving hospital • Starting / increasing work hours • A new child • Moving home • You may feel that you have taken a step backward. This is normal. Slowly over time you will adjust. • You can take the long slow road – pacing/management • Or the quick road that feels easier – life as normal which leads to boom and bust • In the end you will hopefully get to the same place but the journey will be harder with boom and bust

11. Factors which maintain fatigue • Having too much rest during the day • Anxiety about resting during the day (e.g. I must get to sleep) • Rigid focus on anxiety reduction techniques (e.g. at 1pm I need to rest) • Using caffeine, energy drinks, and nicotine to ‘delay’ fatigue • Not doing enough activity • Keeping to the same plan • i.e. the same amount of activity throughout recovery

12. Factors we may not be able to change • Side effects of medication • But you can always ask for a medication review • The living circumstances of the patient • E.g. very busy household

13. Other impacts • Other issues can impact on fatigue • Pain • Mood • Life stressors • Other medical issues • We need to get the whole picture

14. Measuring fatigue • The fatigue severity scale (FSS) • Behavioural consequences of fatigue • Impact of fatigue on daily functioning • 9 items • Visual analogue scale for fatigue (VAS-F) • Respond to 12 items on 2 scales • Energy scale • not at all active to extremely active • Fatigue scale • Not at all worn out to extremely worn out

15. Measuring fatigue • Causes of fatigue questionnaire (COF) • 12 activities, rate how fatiguing on a 5 point scale • Mental and physical effort • Epworth Sleepiness Study • 8 questions • Rating the likelihood of falling sleep whilst engaging in activities

16. Gathering information from other sources is important especially with clients with poor insight • Video evidence (with permission) can be useful in showing them the effects of fatigue • Looking in the mirror (literally)

17. Defining fatigue • There are multiple aspects to fatigue • The end product is tiredness • We need to understand why our clients get tired

18. Emotional fatigue • Our mental well being has an impact on our energy levels • Improving mood = increased energy • Brain injury can impact on our management of emotions • Anxiety reduction techniques • Thought challenging / restructuring • Worry dairy • Breathing • Gradual increase in pleasurable activity • Weekly planner

19. Physical fatigue • Brain injury can bring about physical changes which make everyday tasks more demanding • When planning the week consider the impact of physical fatigue • E.g. a client in a wheelchair completing domestic tasks before going out to lunch with friends

20. Cognitive fatigue • Brain injury can cause cognitive changes • What are the clients cognitive difficulties? • These changes impact on how you tailor your therapy as well as increasing energy demands when engaged in cognitive tasks • E.g. memory difficulties = repeat information over a number of sessions

21. Matching • Physical, emotional, and cognitive are interlinked… • BUT…remember a highly cognitively demanding task will have more impact on someone with cognitive difficulties • Consider the clients difficulties when planning activities for the week • Create their own tailored plan • High energy tasks • Low energy tasks

22. Strategies • Fatigue management • Psycho-education about the signs of fatigue • The boom and bust cycle • Challenge unhelpful attitudes • ‘just need to push through it’ • Learning their own signs and triggers • Planning and pacing • Rest before big activities • What are their personal triggers to fatigue • Micro-breaks during big activities • Checking in on how you feel

23. The basket technique • Life does not go on hold for our clients whilst they get their heads around fatigue management • This basic approach is a simple way of managing the chaos • With the client write down all of the things that they need to do

24. The basket technique

25. Delegation • This is about reserving energy for the things the client really wants to do • Management is about giving other people responsibility • High achieving clients find this difficult • Re-framing: they have the control of delegation • It is about them giving tasks out, not having them taken from away

26. Pacing fun activities • This means extending the normal daily or weekly plan • Planning for special events • E.g. Christmas • Setting an achievable goal and making a plan • Have a rest before I go for 1 hour • Arrive at 7pm • Stay for 2 hours • Have a micro-break after 1 hour • Stick to the plan • If a client experiences a ‘bust’ at the end of a pleasurable activity this is what they are likely to remember • Leave on a high • More likely to do it again • Get used to the benefits of following a plan • Improves mood and sense of achievement

27. Client B • Left sided carotid artery dissection resulting in stroke • Wanted to go to social events • Barriers • Fatigue • Noise sensitivity • Word finding difficulties • Developed a plan • Will attend for 4 hours • No alcohol • Microbreaks every 30 mins (mobile phone reminder) • Go home early if feel fatigued • Leave on a high

28. What happened? • Drank alcohol • Ignored mobile phone reminders • Partner felt like a nag • Became overstimulated • Had an argument on the way home • The main thing they remembered from the night was the argument

29. Back to the plan • Identified another social event • What did we learn from the last one? • Learning experience from the first outing made the next trip more successful • Left on a high

30. Let clients make mistakes • Family – avoid being the nag (therapists too) • Boom and bust is how some clients learn • Avoid saying ‘I told you so’ • Instead – ‘so what have you learned?’ • Learning can take a long time • Learning is confounded by the stages of adjustment (i.e. denial, hopelessness etc) • Fatigue is not a thing that can be battled • Some clients need time to learn that

31. Active relaxing • For people who find it hard to relax or rest during the day consider low energy tasks • Some clients find resting too boring or may use the time to ruminate • Rests need to be tailored to the client • Consider their strengths and weaknesses • E.g. a client with receptive language difficulties will not find reading relaxing • These can be sometimes more effective than trying to get a client to ‘just rest’

32. Flexibility • Brain injury recovery goes on for years therefore clients need to know that they should continue to test boundaries after therapy has ended • Life changes and so fatigue management needs to change with it