The Dementia Podcast

Talking Dementia: Reminiscence and Life Story Work

October 21, 2021 Professor Colm Cunningham
The Dementia Podcast
Talking Dementia: Reminiscence and Life Story Work
Show Notes Transcript

Join Colm, Professor Assumpta Ryan and Professor Faith Gibson in their discussion of the meaning and best practice implementation of reminiscence and life story work in dementia care.

Professor Assumpta Ryan is the Professor of Ageing and Health at Ulster University. In this episode she refers to the success of her app ‘The InspireD Reminiscence App’ .

Professor Faith Gibson is a friend and colleague of Colm, who has informed much of the work of HammondCare's Dementia Centre . A social worker by training, Faith is a pioneer in the field of reminiscence and life story work. Her most recent publication 'International Perspectives on Reminiscence, Life Review and Life Story Work' and earlier work 'Reminiscence and Life Story Work. A Practice Guide' are informative and instructional resources on reminiscence work.  

Together, Colm, Faith and Assumpta provide insight, guidance and shared experience to this episode.

The Cochrane Library’s 1998, 2005 and current 2018 review 'Reminiscence therapy for dementia'   displays over time, how  memories and past experiences with other people using tangible prompts evokes memories and stimulate conversation for those living with dementia.

'International Journey of Reminiscence and Life Review' publishes original work exploring the nature, function, and application of remembering the personal past within a wide range of research contexts and practice settings.. 

The  European Reminiscence Network and American International Center for Life Story Innovations and Practise promote best practice in reminiscence work and to share experience across national frontiers.

Colm Cunningham:

Hello to you It's fantastic to have you join us again on The Dementia Podcast. I'm your host, Colm Cunningham. And in this episode, we're going to be talking about the important role, reminiscence and life story work play in the area of dementia care. And to do that I'm going to be joined by two people who have a strong link to Northern Ireland. Firstly, Professor Assumpta Ryan, who's the professor of aging Health at the University of Ulster. So she's joining us from Northern Ireland, though it's great to have her with us. And just down the road from me here in North Sydney is Professor Faith Gibson, who I first met at the University of Ulster and knew much about her work in reminiscence. But she's now joining me from her home here in Sydney, Australia. And it's fantastic to have both of you join us and give your reflections on your work and your understanding as learning in this important area. This work is very relevant to the dementia center team, as we are too often called in to work with people whose behavior is changed, only to discover a lack of work on knowing and understanding the person, which is why your work and this podcast in reminiscence is so important, as it's key to supporting the person. Before I go into my first question, the episode is being recorded across three sites. So it does impact on the audio quality. But the good news is The Dementia Podcast team are now adding the transcripts of all our podcast shows to the show notes area, so you'll be able to refer to them if needed. So my first question. Assumpta, What are your early memories of getting involved in this type of work?

Assumpta Ryan:

I started off my career in mental health nursing, became introduced to reminiscence, you know very often was taken down as a student nurse to this room that had all these old artifacts and memorabilia. And it really amazed me to see how patients as the referred to at the time in this sort of large scale mental institution, as it was referred to at the time changed and they changed to themselves, they changed in the eyes of other patients. And they changed in the eyes of staff and the only thing that was different is that they started to talk and they started to tell their story. And I knew that after that my reaction to them was different. So I looked at them as people at the time sat in the corners, you know, around the rooms. I saw them as Mary who lost a child in infancy or as John who's you know, had this magnificent life you know, enjoy this porch or whatever. So I guess that was probably my first my first introduction to reminiscence I work at this moment in time. My research is around the reminiscence in dementia, but also supporting people in long term care. And I see reminiscence as hugely important in making connections building relationships or sustaining relationships. And we see how important that is particularly in the light of the last 18 months.

Colm Cunningham:

Faith, what are your reflections on getting involved in reminiscence work?

Faith Gibson:

When I was married, I went to live in Northern Ireland and as the Northern Ireland troubles broke out we evacuated my husband's parents so often from East Belfast that we decided in the end, it was best for everybody if they moved in with us in Castlerock. So that was really my first immersion in old people and by the early 80s, London based aged care organisation produced three tape slide reminiscence packages called"Reacall" and they were featuring audio and photographic match pictures all based on the London east end primarily. And they were designed to first of all, remedy the awful passivity that Assumpta has already mentioned about older people in care homes spending the day busy doing nothing. It's sitting around with four walls in a room there staring into space not talking to each other and I was rather excited when I first read about this package "Recall", I had live in Northern Ireland long enough to realise that local was very local. And sharing lots of people pictures of the east end of London, was really unlikely too interesting to tell their stories. So it says about researching and producing some Northern Ireland material to see how it worked and became an instantaneous trigger for older people, particularly in care homes. Who had really grown up in the old Irish tradition as Assumpta has told us about her Granny and they were brimming full of stories.

Colm Cunningham:

Fifth, you've triggered a memory for me, talking about London, I used to use a reminiscence tool called songs that won the war. And there was around the Blitz, and I'd used it many times. But one day, I found a resident hiding under a table, she was actually doing the right thing that she'd been told as a girl when she hears a siren. Because I'd never realized the tape that we were using actually started with a siren, I'd never seen this reaction. So clearly, we need to be very aware and tailor to the individual when we're using these sort of tools. Now all of that should come naturally. But I realize there are some challenges. So why Assumpta doesn't it come naturally to do reminiscence work?

Assumpta Ryan:

I don't know, I think in the context of of care and of long term care facilities, time is an issue. And I know staff are under pressure. But I don't accept that time is the only reason people perhaps don't engage in these sorts of conversations. On the positive side, I think once people are sort of exposed to it, and see it, and see the change in individuals as a result of triggering that emotional triggering that story or just asking the question, you know, the novelty will never wear off. I think it's about when I'm doing my research, I try and make a point of going out and actually meeting the people. So the latest bit of reminiscence work we were involved in. I remember sitting in a kitchen table talking to a man who had dementia. And somebody had asked him about his breakfast, and he wasn't able to remember what he had from his breakfast, but we're talking about his childhood. And he remembered his first day at school, what he wore, what his mother wore, what the teacher wore, how the school the smell of the school, when he went into it on the first day, he was able to remember phone numbers he was able to remember addresses, I could see his adult son thinking, Oh, my goodness, this was just incredible

Colm Cunningham:

Faith you obviously one of the things I when I was visiting you recently was your book, looking at the literature on this, can you help the listeners understand the difference between if there is one between reminiscence and life story work.

Faith Gibson:

If we think of reminiscence as an umbrella term, and life story work, being something related to the individual can be done by individuals, or groups. And we might talk some more later about relative merits. If that there's a third term there, I think it's important to consider life review, which now they have a conversation with people trying to take a second look as it were and form a different view or enrich broader understanding what they're talking about. So reminiscence might be simple and just something you do for fun or entertainment. Well it's more than that time, where you're seeking to encourage people really to take stock of where they've come from, where they are, and where they might hope to, to go. So the three terms are very much shading into each other. And yet, when it comes to doing, maybe this is deliberate and there are certain ways you might address each of those concepts.

Colm Cunningham:

Faith, that's really helpful. I'll remember that umbrella term and shading into each other of the individual group and life review. Assumpta for those listening who might feel hesitant, do you need to be trained in doing this? And should you worry about the fact that you could trigger a difficult memory?

Assumpta Ryan:

I think you raise a very important point. And if somebody hasn't experience or or skills or an understanding of reminiscence, and maybe the memories, it can trigger that might be uncomfortable for the person experiencing them, or indeed, for the person listening to them. That can be a very awkward situation. So certainly, I worked and I know Faith was pa t of an probably founder of th reminiscence network, No thern Ireland. So in any re earch that I worked on, you kn w, we worked with fa ilitators who were skilled in re iniscence facilitation, so no only had their facilitation sk lls, but they were also sk lled in reminiscence work. An so certainly, I would be ad ocating that now appreciate ap reciating that it's not al ays possible to have that. An think it may be of maybe so e young staff, or maybe some st dents may be listening to the po cast, I will be recommending th t they work with, or spend ti e with somebody who has ex erience in this field, wh ther it's in a mental health se ting, or whether it's a care ho e setting, and who know, the pe ple they're talking to, I th nk knowing when whereas kn wing if it's a care home nowing the individual residing here, that's really important ecause they will know that just ecause a memory is difficult, nd love, we all have difficult emories, you know, memories are ot just these wonderful, omantic, you know, glamorous, ou know, experiences we have, hey're hard, but sometimes we eed to go there, sometimes we eed to experience that pain, nd I'm much more comfortable ow, you know, than I would have een maybe as a 20 year old tudent nurse, being with omebody who is, you know, ecoming upset or tearful at a articular memory, the loss of a child is going to bring a te r to one's eye, and it's okay o do that. But certainly I would be advocating for for young sort of inexperienced staff, regardl ss of whatever they are to be supported in engag ng reminiscence by a m re experienced member member of staff and also that once t ey have their wings, if you wi l, also somebody that that they an come back

Faith Gibson:

I think training is important and supporting people who, who are getting involved with it. And having a buddy to work with is also a great help. We need to distinguish, I think, between spontaneous memories and planned deliberate work. And there's a lot to be, said for alerting care staff, to getting the skills and being sufficiently comfortable with people who may become emotional to capitalize on those occasions when somebody wants to talk with spontaneously because something in their environment has triggered a memory and instead of saying, Oh, Mr. Smith, yes, that must have been very interesting. And then hurrying on to either talk about what you did last Saturday night or the latest movie you've been to or at being so embarrassed, because someone might shed a tear. We need to help staff capitalize on those chances talk to people never dismiss it as just chatting. And one of the reasons why. One of the obstacles where people don't always pick up on those chances is because they don't feel they're doing their proper job. And they're afraid that the senior staff members might feel they're wasting time who indeed they call me. They feel that they wouldn't be getting on with next real job and not just chatting. So using that is spontaneous unplanned opportunities is enormously important

Colm Cunningham:

I can see you're agreeing there Assumpta

Assumpta Ryan:

Absolutely Faith and I suppose I've always been slightly uncomfortable with the term simple reminiscence as often used in the literature to describe those sort of spontaneous events. And very often shorter durations. And for example, the life review or the life story work. And I always felt that if that term symbol slightly devalues, you know, that experience, because any opportunity to connect with somebody, any opportunity, and we've all had it, we've met people, you know, on fleeting occasions, and for whatever reason, had a sort of connection with them. And so any opportunity that we have to connect with other people, and any opportunity that staff working in care homes or care settings have to connect with other people is a really important opportunity, in some cases, a once in a lifetime opportunity. And the impact of that on the person on the staff and on relationships generally, I don't think can ever be underestimated.

Colm Cunningham:

Faith, you mentioned the idea of individual and group work. Can you tell me a bit more about what's important there?

Faith Gibson:

Yes, I think that certainly, with group work we need to learn skills of working with people in in groups. It also depends on a setting where the works take place, work with people with dementia, in particular, needs to be modified somewhat for larger reminiscence groups need to be very small if people have dementia three or four people perhaps. But there's enormous value in that meeting together. We have to make sure that in residential care, for example, I think back to two one clear parties in both with where, at the end of the session, one of the women said I'm so glad, I'm part of this group. Because I've got to know Mrs. Brown. I've lived in a room, two rooms away from her for three years, and I've never really got to know her and now I've discovered we not only shared going to the same one teacher country school, but at different periods. But I know about her family. And I know the interesting things and the struggles she's had throughout his life. And we could have been friends from the beginning but the reminiscence group brought us together

Colm Cunningham:

Assumpta you talked about the son who suddenly discovered things he didn't know about his father. So for families who are listening, what would they be able to do in terms of thinking how they contribute to others, and even themselves, knowing the life story of the person they love.

Assumpta Ryan:

It amazes me Colm how myself as an adult child, and both my parents have died. But I regret not talking to them more, I regret not asking them about their young life where they grew up, I regret not doing the family tree. And I think that had I done so it might have without a doubt it would have I think helped the relationship. My father died quite suddenly. And my mother sort of had a long illness before she died. And then that opportunity was missed, if you will. So I and for me, and Faith has alluded to that there is the potential to really strengthen relationships, so even relationships that that perhaps maybe, are fractured and very often in the caregiving relationships, it's a it's a real challenge. It's a challenge for the carer, it's a challenge for the older person or the person with dementia. And those relationships are hard and the relationship can be lost in the mayhem of just getting through every day. And I have found that relationships can definitely be strengthened. And I suppose knowing that the mischeif that, you know, one's mother or father got up to as as as a young child, you know, knowing that they also did the sort of things that they warned us never to me that's really important. At the end of the day, we are all the product of the stories and the life experiences that we have lived and it may be the case that families may better understand a particular position maybe their parents takes or indeed a particular behavior their parents engages in as they age, knowing a bit more I suppose about the biography and the rich tapestry of their lives

Colm Cunningham:

Assumpta a number of pieces of your work recently have really focused on the use of technology to help us

Assumpta Ryan:

We were interested in looking at the here. extent to which we could use technology to support reminiscence okay. And it was very much a trial a pilot, because we knew that trying to engage people, older people with technology, some older people are extremely savvy with technology, I would probably be not particularly good with technology. So it's not about making assumptions. But certainly it can be hard to to engage people with with technology, and then we're trying to engage them with sort of the reminiscence experience. But we worked with, with people from the local Alzheimers society, a group of people living with dementia and their carers, and we worked with them to develop an app. And they informed every stage of the development of that app. So they told us what they liked what they didn't like, in terms of, of the user interface, when that was developed, and we rolled that out to 30 people living in the community with a dementia diagnosis and and their carers. And we provided them with support from the reminiscence networks or reminiscence facilitator went into their homes, and talked to them about reminiscence, and helped them to identify the memories that were of significance to them. Because I think had we not done that this app could have become a digital photo album, rather than a digital memory book. So they had that expert facilitation, which was really important. And we learned from our results that even seeing that it interactive behavior modeled by the experts actually helped families to try and communicate with their relative in a way they might not have done before. So we use ask people to use that for about three months and provided some IT support. And we wanted to know if it worked, and what might be the changes and as Faith and yourself Colm will know, you know, a lot of the outcome measures are around cognition and quality of life and impact on depression, and so on and so forth as a result of reminiscence. But we felt that the change that was most likely to occur was probably going to occur at the level of the relationship. So we were hopeful that if if people with the dementia diagnosis and their carer engaged in a joint reminiscence experience, we were hoping that that would impact the extent to which they felt closer to one another. So the scales that we used, looked at that so there was a mutuality scale, which literally just measure ask questions about how people how close people felt to one another. We gave out those scales at the beginning, middle and end of the program, and we were able to show that to the person living with dementia, there was a statistically significant increase or a marked increase in the degree of closeness they felt to their carer. Okay, there was also a marked increase in their sense of well being and equally so for carers cares felt closer to the person with dementia at the end of the experience, but there was a slight dip in their well being. And the real challenge and and much of the Faith will agree with me on this, but I think the real challenge in terms of trying to support people living with dementia and their carers is to develop an intervention that works equally well for both parties. Because in a lot of those interventions, we're asking a lot of the carer, and carers have a lot of rules and responsibilities already. So we've been very careful not to layer more and more and more and more onto the carer. So I think we were satisfied at the end of that particular study that we had achieved what was probably realistically achievable, and we were pleased with it. We also found that the pilot was designed to be a joint experience that the people in which mentioned use the app independently and more frequently than their carers. And again, that challenged a lot of the myths around technology. And when we did the interviews at the end of it, it was quite remarkable how uplifting and how empowering it was, for people to be able to learn to use an app that albeit was designed for them and by the end, but nonetheless to be able to use an iPad independently to look at photographs or listen to music or whatever. That was really quite quite remarkable experience I think challenged a lot of the myths around so now that app is is that the second iteration of that is available. It's called The inspired reminiscence app that's available to download freely, I see opportunities for more intergenerational contact, we worked with a particular gentleman, he had young onset dementia. And his wife was becoming quite upset because it appeared that the relationship between the teenage son and his dad was was just becoming very, very distant. And then when the father started to use the iPad, all of a sudden, you know, you could just see the son was no, show me, I'll do that, or whatever, you could see the beginning of something. So I think, you know, generate technology can divide us. But I think technology also has the possibility to unite us. And we are hoping now in the next couple of months to start some research, looking at how technology can support intergenerational relationships, and in the context of supporting people living with dementia,

Colm Cunningham:

And Assumpta I'd better check, because people will be immediately asking is, can we put the link to that app on our show and show notes? Is that something that's really a bit?

Assumpta Ryan:

Yes, you can, there is a website to support the app. And I think that's really important because why, you know, we went from having an app that was tested with support from reminiscence facilitators and IT support to us my computer colleagues would say an app that's released in the wild and I think we need probably some sort of a hybrid so that's why we have a develop that so I give you the link to the website and and to the app, it is the inspired app, it is free to download I said from the Play Store or Apple store

Colm Cunningham:

Oh no we'll definitely be putting that in there because I know there'll be people listening to say how to connect to this. So promise you, we'll put those in the show notes. Faith over a cup of coffee, we talked about your most recent book, international perspectives on reminiscence life review and life story work. And as I listened to you that day, I thought we have got to do a podcast on this important issue. Faith and Assumpta we have covered so much today. What message can you leave us with to spur us on in doing more in reminiscence?

Faith Gibson:

I think to sum up in a way, a framework or suggestions, I think you need to think about if you're going to embark on reminiscence, whether it's with a group or an individual or need to think about what your objectives are, why are you doing it? Is it to do family history? Is it worth it to make this person come to terms with life? he really lacks things in order to make amends for things that have toppled. Is it just to have a happy afternoon sharing recollections of good old times. There are a range of different reasons to reminisce. I mean Jeffrey we would talk about fate research. So, the purpose is the people you working with. Their age, their backgrounds, their circumstances. And you should know them carefully, if not to select because reminiscence doesn't suit everybody and not everybody wants to reminisce and that must be respected. So there's, the purpose, the people, there's the place where you do it and that will partly determine how you go about it. Then there's the process that actually happens in a group session or in the individual sessions, and interaction and conversation. And then finally, I suppose this product, or the outcome for many people next is very important for the family history or the book, some people like to paint or dance or sing. And music, like reminiscence, is another bridge and a wonderful fruitful way of connecting with people. so I like to try and think about it

Assumpta Ryan:

Faith probably has said it all. But I guess I'm thinking maybe the people who are listening to this? And the two things that I think were I to don a uniform or maybe not a uniform, it's to go back as a nurse or working at residential facility, I would say, what's your story, you know, I would want to know the story of the person. And in the context of people living with dementia, the words that somebody said to me, you know, recently, there's still so much inside, you know, we have no idea what's inside until we try and explore that. And, you know, looking at somebody and accepting that there is still so much inside regardless of where the person is in terms of that dementia trajectory. And taking on the task of sort of finding out what this for that is, is really important to me so so I think there's a very structured, formal sort of read reminiscence where one undertakes that decides they're going to juice but then I think there is there is that sort of almost organic reminiscence that can grow out of a richness at the richness of knowledge, if you will, of the life of another human being and you know, as carers, we are in a privileged position. Really we are to be able to tap into that

Colm Cunningham:

Faith and Assumpta thank you so much for your time and your valued insights today. It's been great and especially Assumpta you had to get up early. So we really appreciated all your time. Thanks so much

Assumpta Ryan:

beautiful day here in Northern Ireland. Gorgeous September September sunshine. So it was my pleasure, thank you. And great to see Faith again. Magnificent Faith is just a legend in reminiscence, and has influenced so much research and just Her Grace and brilliance and intelligence has just inspired a nation of researchers not just of reminiscence researchers, but she lives out her values and it was my pleasure Faith to share this podcast with you.

Faith Gibson:

Assumpta you're very kind and very generous. Remember me told you friends, and especially with Mitchell,

Assumpta Ryan:

yes, indeed. I will indeed.

Colm Cunningham:

Thank you so much Faith and Assumpta for joining me today. It's such an important issue. And I really appreciate your insights and all of the work that you've both done to drive this as a key area of good practice in caring for people with dementia and older people. As always, it's great to have your company on the dementia podcast and we welcome your feedback by emailing us on hello@dementiacentre.com. Thank you so much for listening and bye for now.