1. Training and supervision in delivering the START intervention Dr Penny Rapaport Clinical Psychologist UCL

2. Themes / considerations for each session * Thank you to the START research assistants for sharing their experiences*

3. Tips for therapists delivering the intervention Reflect upon how recently the person with dementia (PWD) has been diagnosed and the nature of their presentation Adjust pace, style, language to fit with the carer There are a range of bio-psycho-social factors that will impact upon behaviour Homework tasks are a way to identify patterns / reinforce new strategies Guide the carers to develop their own solutions for difficulties Do not feel you have to be an ‘expert’ on everything Value the carers experience / expertise Use supervision to reflect on safeguarding / risk Be pragmatic / flexible about completing all 8 sessions

4. SESSION 1 Session 1 introduces a number of key ideas. Carers may be overwhelmed with problems (or not feel there are any) and may need some help in identifying and naming problems. Establish with the carer how best to deliver the sessions. Ask the carer how they refer to themselves and the relative they are caring for, do not to assume that the see themselves as a carer. In relation to the stress reduction techniques, explain that not everybody likes all the relaxation exercises, and the exercises may be something very new and unfamiliar for them.

5. SESSION 2 Session 2 explores triggers of challenging behaviour and identifies which reactions may reinforce the behaviours. Be mindful of pre-existing difficulties in relationships which may have now intensified. Vary the language used for example referring to ‘difficulties’ ‘challenges’ or ‘changes’ as well as ‘problem behaviours. Bear in mind behaviours that carers are experiencing (and possible strategies) which they may have previously mentioned in order to demonstrate the ideas being introduced. Emphasise that although there are ways for the carer to try and manage the behaviours – they are not to blame. Highlight that there are no ‘right answers’.

6. SESSION 3 Session 3 explores how we can develop specific strategies to change behaviours by changing a trigger or a reaction. Remind carers that these are the general principles in behavioural change / modification. Emphasise that behavioural change does not happen overnight and it is not always easy – it requires a persistent and consistent approach and can be about trial and error.

7. SESSION 4 Session 4 has a more ‘cognitive’ focus highlighting the relationship between thoughts, feelings and behaviours. For some carers the idea of talking about ‘thoughts’ and ‘feelings’ will be less familiar than talking about behaviours. Consider different ways to ask the questions, for example asking: What was going through your mind? Or What struck you? It may be helpful to ask carers how someone else in a similar situation may have felt, as for some people thinking generally can be easier than relating to their own experiences.

8. SESSION 5 By session 5, therapists will probably have a good idea about how the carer communicates and what it may be useful to focus upon within the session. It is important to remember that we all have different communication styles depending on who we are talking to and in what context. Although there is no ‘right’ style of communicating, it can be useful with carers of people with dementia to highlight how being assertive in accessing support for themselves and their relatives can be especially effective.

9. SESSION 5 CONT. For the role play exercise, therapists should try to get as much information about the situation being acted out. If it feels appropriate, therapists should to challenge the carer in the role play, getting them to really persevere with asking for help and being assertive. Carers who received the intervention in the research trial reported that having some or all of the ‘tips for assertive communication’ on a list by the phone provides a helpful prompt. Many people reported finding the ‘communication with your relative’ section helpful, as almost all people will be experiencing some difficulties – even if they have not yet identified them as communication problems.

10. SESSION 6 Session 6 is about giving the person the knowledge of how and where to access additional services and support. For many carers, thinking about the future and accepting help in any form is a very sensitive issue. Try to respect the carer’s feelings and remind them that even if they are not ready to think about the future, it is useful to have the information available to them. For session 6 – we offer the carer the option to bring someone else along to the session. It is important in advance of the session to think about how you manage this, so that everyone is heard, the main carer feels supported and the session is useful.

11. SESSION 6 CONT. Don’t be afraid to skip parts of this session if it will not be helpful – e.g. if the already have Lasting Power of Attorney in place. Don’t feel you have to know every service, or care option. It’s OK to say, ‘I don’t want to give you the wrong information’ – it is better to signpost or come back to them at a later date with correct information.

12. SESSION 7 Session 7 highlights how when caring, the number of pleasant activities that people engage in can significantly diminish, impacting upon mood. The biggest challenge will be for the carer to find the time and energy to do activities. Therefore the aim of the session will be to help carers recognise these barriers; and overcome these barriers through planning. Some carers will feel guilty about doing something for themselves; if so, it is important to reassure carers that this may actually help them become better carers. Be aware that pre-existing relationship between carer and patient could determine what (if any) joint activities might be acceptable to the carer.

13. SESSION 8 Session 8 consolidates all that you have talked about and the carer has (hopefully) learned over the last 7 sessions, and making sure they have the skills and understanding to continue using the recording techniques, skills and strategies. Many of the carers will have limited support outside of the sessions therefore it is important that they are prepared in advance that the sessions will be ending. Discuss with carers who they would approach if a problem were to arise in the future or if they need further support and if appropriate, depending upon the context of the service, signpost or refer on to another service.

14. References Knapp M, King D, Romeo R, Schehl B, Barber J, Griffin M et al. Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial. BMJ 2013; 347:f6342. Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, King D et al. Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. BMJ 2013; 347:f6276. Li R, Cooper C, Bradley J, Shulman A, Livingston G. 2012. Coping strategies and psychological morbidity in family carers of people with dementia: A systematic Review and meta-analysis. Journal of Affective Disorders 139: 1-11. Selwood A, Johnston K, Katona C. et al. 2007. Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders 101: 75-89 Sommerlad, A, Manela, M, Cooper, C, Rapaport, P. & Livingston, G. 2014. START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention. BMJ Open 2014;4:6 e005273 doi:10.1136/bmjopen- 2014-005273