Psychological therapy: trial of a new intervention Richard Cheston University of the West of England/RICE 18/09/2014 1 Dementia – the post diagnostic gap An early diagnosis - may help people to adjust to the illness prepare for the future reduce stress But it’s not clear … What post-diagnostic support should be available? Who should provide it? Where this should take place – primary care, memory clinics, third sector? Preliminary work Cheston, Jones and Gilliard (2003) - Ten week group intervention - task of group “to think about what it’s like when your memory isn’t as good as it used to be”. Predominantly exploratory approach 19 research participants from 6 groups. Data collected at 4 different points. Unpublished data from 8 additional participants Measures of depression collected independently – baseline, intervention and follow-up measures Cheston and Jones (2008) – compared with psycho-educational model Logsdon et al (2010) Early Stage Memory Support groups – 96 people in intervention arm and 46 in control. Significant improvement in quality of life, depression and family communication Living Well with Dementia Groups Two year pilot RCT funded by NIHR – led by Ann Marshall 60 people randomised to receive Eight week plus two intervention (8+2); or Treatment as Usual (Waiting list control) Trained memory clinic nurses to use manual Seven groups set up in Hampshire and Wiltshire Measured Quality of Life, self-esteem and depression Data collection at baseline, end of group and 10 week follow-up by researcher blind to group allocation Main aim is to test for future larger trial Follow-up interviews with 17 participants – acceptability Sessions were recorded – fidelity measure and process research Also small study in Primary Care Participants Participants are Six to eight participants in each group Joint sessions with family at start and at end Primary care project has a parallel group for carers Session length is 75 minutes referred from memory clinics have a recent diagnosis of either Alzheimer’s disease, Vascular Dementia or Lewy Body dementia with an MMSE of at least 18 acknowledge, at least occasionally, that they have a memory problem; do NOT have significant mental health problems Can include playing a DVD Handouts at end of every session Closed group Structure of Living Well with Dementia group sessions Pre-group: setting the scene (with families) Session one and two: identifying memory problems and strategies Session three, four and five: finding a way through feelings, coping with stress, relationships and social situations Session six, seven and eight: information about dementia, living as well as you can, staying active Post-group: Bringing it all back together (with families) Self-esteem Participant rated Quality of Life 40 39 38 37 Pre Post Follow-up 36 35 34 33 32 LivDem Intervention LivDem control Depression 9 8 7 6 5 Pre Post Follow-up 4 3 2 1 0 LivDem Intervention LivDem control 2003 Feedback and acceptability Participants Generally felt positive about the groups Some felt that they had benefitted Carers felt Positively about the groups Generally felt that they were beneficial for people with dementia Therapists All felt the groups were worthwhile Generally patients benefit Also felt they benefited - learnt new skills and enjoyed doing the groups People with dementia “We talked about dementia and the problem with dementia, you know, the memory problem, but if you asking me whether the memory is still there I would say well no, it’s gone, it’s in the background there.” Well I suppose the biggest thing is you realise that there’s a lot of people with dementia, you know, that you’re, you know, it’s not just a very small thing, it’s a big thing. And I suppose that makes you feel a wee bit better doesn’t it? [laughing] You know, that you’re not the only one.” Carers – learning about dementia I thought they were very good. Definitely. And well it gave us more insight on what Alzheimer’s is. Because, you know, in our little world we don’t know, you just hear about it. But there’s been so much of it lately in the papers that, you know, since R’s been diagnosed, that, you know, you can learn about it. But up until then there wasn’t a lot. So going there definitely enlightened us on what Alzheimer’s Carer – noticing change There’s two important things about that group as far as you’re concerned. One you’ve already mentioned it makes you realise that you’re not alone but the other, probably the most important thing, is it encouraged you in front of other people to stand up and say “I have dementia”. . . I think up until that hospital session S was in denial that she had it but after that she wasn’t in denial and that helped a hell of a lot I think.” 18/09/2014 13 Therapists “I think it’s a good investment those ten sessions … I think that can change the whole pathway of someone’s illness. I really do. Because I think far too much now somebody has struggled and struggled and struggled and we’re thinking “Why did we not know about this?” You know, you’re often looking for little things, you’re not, you know with dementia you’re not looking for huge great leaps and changes and you often have to put a lot of work in to get something back from people but when you see that I think that really makes you feel like you’ve done something.” Concerns Participants had different cognitive levels some benefits, but also drawbacks Did people retain anything? Not everyone wanted to continue People with sensory loss sometimes struggled Process of change Dementia involves both emotional as well as cognitive challenges “Oh God”, I as good as lost myself”, “I have lost myself”, “I am lost” Frau Auguste D, (1901) Important to understand the process of “coming to terms” with dementia. This will enable us to support people more effectively identify people for whom confronting dementia directly may be risky 18/09/2014 16 Work to date Series of small scale studies looking at the process of change within psychotherapy groups. Recently extended this to non-therapy settings – looking at changes before and after having a diagnosis, and in how couples discuss the diagnosis Qualitative research methods – analysing recordings Consistent findings is that one of the most distressing aspects of dementia is people’s fears about losing control 18/09/2014 17 The Voldermort problem (naming dementia means losing the battle) Henry - It [memory loss] has been in my mind yes, erm , because in a way it’s almost writing you off. And I don’t think that is right at all, … but you are suddenly becoming somebody totally different to what you used to be and mentally you don’t want that … mentally you don’t want to accept that, and I think that’s a good thing, because once you start waving the white flag, you pack up and I don’t want that. “Well I think, you have got to have a positive attitude, in life, if you don’t you just wave the white flag and you pack it all in, and I don’t want that, no”. “…I mean once you have reached the age of 80 its ever so easy to wave the white flag and say oh I can’t do this I can’t do that but, you have got to have a positive attitude, which I think I have got”. 18/09/2014 18 Losing my faculties Mrs H: And I just wonder where it’s going to end, that’s my fear .... you know where am I going to end up, just before the end you know Rik: So what is the frightening, when you say about the future? Mrs H: Being, being useless, you know. Not having all my faculties, I dread that, I dread that, it’s as if I’m going to sort of come to it one morning, perhaps, you know and think ‘oh my godfathers, what’s left?’, you know I really worry about that. Losing control: being dependent Mike: I mean at the moment I can drive, I’ve been driving for around 50-60 years or something like that and then all of a sudden I’m going to have to rely on someone. (Laughs) Mike: And before long they'll be giving you toilet paper and wiping your bum for you ... it's total and absolute control. 18/09/2014 20 Losing control: fears about madness D:Well you already know this, but the biggest thing was to me was that I was going to go down and be a loony, and they were all going to go “yer, yer, yer” [gestures with index finger of hand, pointing and rotating it against his head and signing that he is being thought to be "screwy"] J: it’s a horrible word ... dementia, makes you think that you’re barmy... , yeah the word , cause then you think that you’re nutty (laughs) Len: “I think that if people know, they understand, but if you hide it as I did, first going, they get frustrated with you, so if I was advising someone, if they found themselves in the situation I found myself in, I think you’ve got to be open with people and they may understand instead of thinking ‘oh that silly old fool is losing his marbles’” 18/09/2014 21 Looking back Mr B:... I find I’ve, I’ve got a great deal of moral uplift by coming here. Meeting you, listening to the way you do it. And I don’t see the problem now, it frightened me, the problem of declining memory, until I came here, and now I’m not frightened ... it frightened me. Because I thought, well, I’m going mad, I’m going crazy. What am I going to be like in another five years? But now I realize that everybody is getting this problem 18/09/2014 22 Affect Fear of losing control Warding off awareness Insight Mastery Conclusions A group intervention can be taught and delivered by: Some preliminary evidence that groups can Memory nurses with little experience of therapy groups; and IAPT therapists with little experience of dementia Reduce depression and increase self-esteem Help (some) people to be more able to talk more openly about their illness, and to adjust to it Intervention seems acceptable to participants, families and therapists Some elements of research process (e.g. blinding) work better than others (e.g. randomisation) To work towards application for larger, national, trial Acknowledgments Participants and their families Group therapists Collaborators This presentation presents independent research funded by Ann Marshall, John Spreadbury, Peter Coleman, Mark Mullee, Claire Ballinger, Elizabeth Bartlett, Saskia Boisaven, Emma Lishman, Katie Snow and Lauren Gatting the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG0610-22005). Disclaimer The views expressed here are not necessarily those of the MHF, the NHS, the NIHR or the Department of Health.
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