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Research
A central part of the way in which we have developed the LivDem approach is to make sure that it has a strong evidence base.. Because of this, we think that for the majority of people who complete a LivDem course, there are likely to be two important changes: their confidence will develop and they will find it easier to talk about having dementia
People feel better about themselves. The comment that we hear most often from participants at the end of the course is that they feel more confident about themselves. One lady, for instance, said that it had given her “the confidence to deal with the initial problems that the dementia is causing”. Other comments from those that have attended a course are:
“I didn’t realise there were others in the same situation as me. I felt quite alone before the group”
“I found a sense of belonging and not being judged or laughed at”
“It made the diagnosis less scary”
“I’m not so frightened of the future as I was beforehand”
As psychologists, we describe this in terms of participants developing a higher level of self-esteem - something that often gradually slips away from people who have dementia. In one study (Marshall et al, 2014) we compared 30 participants who attended a course and thirty people who were waiting to attend a course (a control group). Our results showed that for some people who attended the course, the self-esteem of participants in the LivDem group improved compared to those on the waiting list, although once we had controlled for baseline levels this was not significant. Other evaluations carried out locally in different parts of the country (with 128 participants in Northampton and 38 participants in Sussex) have also pointed towards significant improvements in self-esteem as a result of attending the course.
As people feel better about themselves, then they also develop the confidence to face challenges in their life. Someone who attended the course in Northampton said, “the group gave me time to think about how I would manage frustrations about forgetting things. I have learned not to get narky with myself about it. I read more now and get books from the library”. Another person who attended a course in Sussex reported that “I feel more confident and want to do more e.g. outings, simple chores”, while another said, “I am now doing more and reading more, going out instead of sitting at home watching TV.”
Carers, too, often say that their partner has developed the confidence to do more things. One woman recognised this in her husband who she said had “gained more awareness of a shared experience with others which reduced his feelings of isolation and indifference”. A carer in Northampton reported a similar experience: “most importantly the group halted a decline into ‘closing down’ life, so life is opening up. We are looking at what is possible as opposed to what has been lost”.
Research
People are more able to talk about their dementia. One of our main aims in developing the Living Well with Dementia course was to create a safe place for people to discuss their dementia with other people who had similar experiences and who could therefore understand how they felt. For many people, this is exactly what has happened. In sharing their experiences, so people come to realise that they are not the only ones experiencing these symptoms. One person told us:
“Before attending the group I did not accept I had this condition. Since attending I have accepted and come to terms with it”
As the husband of one participant told us:
“Although [this] seems small it is very, very big. I mean once you’ve accepted you’ve got a problem then you will accept people trying to help you more. But if you’re in denial that you have this problem then, of course, you’re not prepared to accept help from anybody.”
Changes in how people talked about dementia. Some of our research has looked at the way in which the language that participants use changes across the eight weeks of the course (Cheston et al, 2015 and 2018). The process of change for some participants seems to be that during the first weeks, they may at times avoid using words such as "dementia" or “Alzheimer’s disease” and instead talk about their dementia indirectly, for instance as “it” or “that thing”. Gradually, another way of talking may emerge, with course participants often being more able to reflect on how their dementia made them feel. In the final sessions, the course moves on talking openly about learning new techniques for living well with dementia, and some participants may begin to speak more openly about feeling pleased that they are coping in a new way with their dementia.
At around the midpoint of the course, participants are encouraged to think over the advantages and disadvantages of telling other people about their diagnosis. However, while we encourage participants to think about this issue, we are aware that this is often a difficult subject for people to think about, and we leave it to participants and their families to decide who to tell and what to say. However, when participants start to find it easier to talk about their dementia in the group, then they often also feel more able to discuss this with others. Participants tell us that:
“I’ve been able to tell people about having dementia and been given the confidence to do that”;
“I started talking about dementia for the first time”
“I now tell people I have dementia … I haven’t got a problem with it now”
LivDem is being used more and more across the UK, as well as in Ireland and Italy (Cheston & Dodd, 2020) and in primary care (Cheston & Howells, 2015).
We are getting together a small group of people with lived experience of dementia and/or caring for someone with dementia to advise us on the LivDem programme and our ongoing research. If you are interested in finding out more about how to get involved then contact the team at livdem@uwe.ac.uk
PUBLIC INVOLVEMENT IN LIVDEM RESEARCH
RELATED REVIEW OF THE LITERATURE
Cheston R and Ivanecka A (2017) Individual and Group Psychotherapy with people affected by dementia: a systematic review of the literature, International Journal of Geriatric Psychiatry, 32 (1), 3-31, doi 10.1002/gps.4529
Edwards HB, Whiting P, Ijaz S, Leach V ,Richards A, Cullum S, Cheston R, Savović J (2018) Quality of family relationships and outcomes of dementia: a systematic review, BMJ Open,8:e015538. doi:10.1136/bmjopen-2016-015538.
ASSOCIATED PAPERS ABOUT THE PROCESS OF CHANGE
Cheston, R (2013) Assimilation of problematic voices within psychotherapeutic work with people with dementia, Neurodisability and Psychotherapy, 1 (1), 70-95
Cheston R (2015) The role of the fear-of-loss-of-control marker within the accounts of people affected by dementia about their illness: implications for psychotherapy, Quaderni di Psicoterapia Cognitiva, 37, pp 45-66 doi: 10.3280/qpc2015-037003.
Lishman E, Cheston R and Smithson J (2016) The Paradox of Dementia: meaning making before and after receiving a diagnosis of dementia, Dementia: The International Journal of Social Research and Policy, 15 (2), 181-203, doi: 10.1177/1471301214520781
Snow K, Cheston R and Smart C (2015) ‘Making sense’ of dementia: Exploring the use of the MAPED to understand how couples process a dementia diagnosis, Dementia: the International Journal of Social Research and Policy, 15 (6), 1515-1533. doi:10.1177/1471301214564447
Watkins, R., Cheston, R., Jones, K. and Gilliard, J. (2006) ‘Coming out’ with Alzheimer's disease: Changes in awareness during a psychotherapy group for people with dementia, Aging & Mental Health, 10(2), pp. 166-176. doi: 10.1080/13607860500312209.
