Consulting people with memory loss

1. Consulting people with memory loss Collaboration between Dementia Voice and UWE funded by Department of Health under section 64 grant

2. The Dignity Challenge (SCIE, 2006). • Enable people to maintain the maximum possible level of independence, choice and control – including working at the pace of the individual, avoiding making assumptions about what people want or what is good for them, providing people with opportunities to influence decisions regarding our policies and practices and promoting choice that is not risk averse.

3. Listen and support people to express their needs and wants – including listening with an open mind to service users, supporting people to express their needs and preferences in a way they feel valued, staff demonstrating effective interpersonal skills in communicating with people with dementia or sensory loss

4. Ensure people feel able to complain without fear of retribution – having a culture in which we can learn from mistakes and not blamed, reassuring carers and clients that nothing bad will happen if they do voice complaints, demonstrating audit, action and feedback from complaints

5. ‘ bureaucracy, staff shortages, poor management and lack of leadership, absence of appropriate training and induction and difficulties with recruitment and retention leading to overuse of temporary staff. There are also wider societal issues, including ageism, other forms of discrimination and abuse. A great deal of work is needed to tackle negative attitudes towards older people, to bring about culture change and to ensure that such attitudes have no place in the health and social care sectors….small changes can make a big difference in day to day practice.’ (SCIE, 2006, p5)

6. Project panels for people with dementia –original title • Aim: to examine ways in which older people with dementia can be consulted • Objectives • Review current work on service user consultation and particularly the use of consultation panels • Interview users, carers and other stakeholders • Identify different models of user involvement • Identify localities\agencies in which to establish consultation exercises

7. Conclusions of Pilot phase • It is possible to consult people with memory loss – dementia – they are able to express choices and preferences but they need to be encouraged to do so • Literature highlighted that people with memory loss had been explicitly excluded from project panels used in consultation exercises • Importance of established relationships with relatives and carers in helping people make choices • The quality of facilitation is important in the process

8. Phase 2 – key themes • Consultation is possible but attention to the processes involved • Skills of staff involved is crucial • Person centred approach • Using carers as conduits for consultation needs examination • Project espousing social model – not concerned with specific diagnosis so use ‘memory loss’

9. 3 models of consultation • Model 1 – individual interviews conducted with people at an early stage of memory loss to establish their wishes and preferences possibly to make a record for the future • Model 2 – discussion groups undertaken within a day care setting with people with moderate memory loss choosing to take part –facilitated by day care staff • Model 3 – carers as conduits – aimed at consultation with people with advanced stages of memory loss using relatives or support workers who have an established and close relationship with the service user. Encouraged to use multiple methods of communication and to keep records.

10. Ethical issues • Attention given to preparation of information and consent forms • Consent given wherever possible by the service user and rechecked often • Arrangements made with agency to give support to service users, carers and staff if required • Attention given to researchers methods of introduction

11. Methods • Model1:Interviews: Topic guide developed 11 interviews completed in peoples own homes • Model 2 :Group Discussions: Briefing session plus briefing notes for group facilitators and debriefing session planned- 8 discussions recorded in 3 organisations. • Model3 :2 workshops plus training pack for mixed groups of community support workers and family carers delivering model 3. 7 observations completed and debriefing session in 1 organisation. Process started but not completed in another organisation

12. What people said about decision making Attending the centre: • I come because I wish to, I feel it is essential being part of a group to share things and getting out is also important because you can get locked in by four walls indefinitely…….Its no good becoming a hermit, that way you learn nothing …. (Group 4) Making choices within the centre • H. I think we need to focus on the fact that we are mature adults and not infants and stop the silly infantile things we do. • F. Like the singing? • H. Yes. Put your left foot in, put your left foot out, do the hokey cokey. It’s alright once for a laugh, but week after week, no. • F. When the singing is on, would you like to walk out and sit somewhere else? • H. Yes, I would. (a) because I can’t sing and (b) I think it’s a bit infantile. (Group2)

13. Problems of being too directive • And it was weird because when we were discussing things and we were asking them if they knew what they wanted to do… they didn’t want to complain they were so quite happy and they were asking all the time why are you asking me these, how come you are at the centre, because we wanted to come and we really enjoy. (Fac4)

14. it’s difficult to say no when you are locked in it really. You cant suddenly say, I don’t want to go there, can you? I would have a devil of a job justifying it by saying no. Its clean and well run but not the same as being at home. I’d rather come here for the week instead cos its familiar ….I can walk in and shake hands with everyone. (Group2) Dealing with difficult issues‘

15. Helping people feel confident to speak out • R1 I think in a way, because I forget a lot, so if there is a way, for me, to, and I’m dumbstruck when you say that words on a subject that I’m bothered about, and that does me good, you see? I cant always answer your questions, I am not very good at this. I cant do it • F That’s alright . If you feel you want to join in M, then do. You have a lot to offer in your opinions • R1 And I can always come and talk to you. We can always talk to you, can’t we?(group5)

16. What did we learn from the group discussions? • It takes time for opinions to emerge and views to be expressed – people welcomed • Unstructured worked best – too many questions and too much formality made for anxiety • Things that were difficult emerged in the discussions that would have been missed or could not have emerged elsewhere. • People valued having time to express themselves and be listened to – in groups or one with staff

17. Model 3- carers as conduits for consultation 1. Community support workers role ; • helped them stay in touch with their client’s wishes and choices even in situations where there is no longer any verbal communication. ‘I tried to respond to what you hoped are the feelings underlying the speech. I would try to respond as if I understood her and then she would say more and so it was a conversation of feelings and intent not literal meaning • befriend rather than attend to physical care

18. 2Community support workers role • are able to concentrate on the mental and social aspects of the person’s well being often at times when others around them might be overwhelmed with the physical necessities of care. ‘ the time to find out where they are at, where they are in their heads when they are trying to communicate’( CSW2) • negotiated regular short visits to suit the client and their family. ‘I just go in as a friend, as a neighbour ….just someone to pop in’ (CSW 1)

19. 3 Building trust and continuity • The CSW service aimed to match workers and clients in a relationship which would continue through the progress and deterioration of the condition, sometimes over several years. • An emphasis on building a trust and empathy firstly with the client and secondly their family. • This continuity was valuable as it allowed the CSW to build a knowledge of their client over time which helped them identify or suggest activities that their client might like to do I have been going for the last four years, we’ve actually started off with them making their own decisions, going out for a walk, where to go , which paper to buy…..as they have progressed I have to help them decide (to do something they liked doing) and I have to encourage them. …..they are insecure and unsure of themselves……but when they know you’re going to let them grab hold of your arm and you’re safely with them they feel much more confident.

20. 4 Supporting people in decision making • The CSWs were able to engage with the complexities of client’s wish both to make choices, their uncertainty about whether they could achieve them and their need for support to carry them out • Sometimes my client will say ‘I don’t like my hairdresser’ but you know….. that they can’t actually get there. You know they would be upset and embarrassed and upset if they tried so you try to dissuade them by saying’ it’s a bit of a way’. …..so though you are cutting out a choice it is really genuinely not something that they could do. (CSW1) • On the way to the post office she was on about her hair so I said ‘ we passed the salon shall we pop in and have look what it’s like’……we made an appointment and I said ‘ make for when I can come back with you, I’ll be with you, I’ll just wait’ …CSW4)

21. 5. Being able to act as an advocate • The CSWs can play an advocacy role for their client with their family from within a context where they can appreciate the pressures on both the client and the carers. • Some of them don’t want to put on their family….they feel a burden to their family whereas they will discuss little things (that bother them) with us that they wouldn’t say to their family (CSW 2) • you can become a family member to them without any of the (emotional) hang-ups…(CSW3) • ‘if they’re cross with their family, trying to make them do something they don’t want to do they’ll say I don’t want to do that but I don’t want to tell him, would you do that (CSW 1)

22. What does it take to be a CSW? • I believe you’ve got to have this sort of feeling for everyone. You got to be this sort of person, that can pick up vibes. If you are a ‘I’ve got to do it by the book’ sort of thing, that don’t work (CSW 2) • ‘ you’ve got to have a good line manager and a lot of training. A lot of it’s common sense, your own common sense. You’ll work with how your minds telling you to work’ (CSW 6)

23. We’re in a really amazing position…if we were unscrupulous, we could alter their lives to do anything. I think we have to be very careful that we don’t impose our wishes on them, its very easy to think ‘I wish Mr & Mrs S would do this or that…so we have to be very careful to give them choices. (CSW 5)

24. Implementing the social model of care for people with memory loss • Identifying and maintaining opportunities for people to retain their decision making potential –preserving spaces and time • Understanding the importance of building confidence and self esteem • Connecting into families but being able to provide an additional source of support and friendship • Being able to provide advocacy appropriately

25. Staff views and organisational issues • Staff tried to be person centred, but environment, time for training, tight schedules and attention to health and safety concerns got in the way • Many staff in model 2 and 3 felt safe ‘doing activities’ and found the unstructured approach challenging. • Doing the workshops and having time to reflect was welcomed by the staff involved • Supervision and systems for feedback and discussion increased staffs’ confidence to try new approaches. • Attention and systems need to be in place to act on issues that were raised • The support and positive encouragement of senior managers was essential

26. Connecting • At certain times in life the links between physical and social care have to be connected so it is important to keep a balance • When communication is challenging support needs are high • People with memory loss need to be supported in ‘staying connected’ and the people around them need similar support to keep connecting with them • Systems need to connect with the values of ‘person centred care’ , respect and dignity and demonstrate them in practice