Results

Could this programme have wider applicability?

Yes, said all the participants (100%): visitors in response to question 3.7 in their questionnaires; the deputy head of the school and the home manager in response to question seven in their questionnaire. The deputy head of the school thinks that all students in general would benefit from this programme and the participant students would recommend it to other schools. It is worth reporting here the students’ full responses because they are very encouraging:

• I thought it was very helpful to learn how to talk with residents with dementia, especially as the disease is becoming more prevalent in society. It’s something that is not taught in schools but useful to know.
• It makes you aware of the different challenges dementia brings and teaches you how to bypass them and also understand the resident as a person…. (it) teaches you how to communicate with a person with dementia without being derogatory or insensitive while giving them control over the conversation.
• It will give students a new level of respect perhaps for the elderly, as they are able to listen to all their trials and tribulations they’ve experienced throughout their life.
• Would be a great experience and a chance to change more people’s views and stereotypes on the matter. As well as giving them key experience to help people with this disability.
• Because it can make more people aware and get them to realise that it isn’t madness; and help to deal with it if a family member were to get it.
• As it shows people that people with dementia are not lazy (?) or mad but are in a state of unmindfulness. It would also spread awareness as almost everyone knows of someone who has dementia, so would benefit everyone to talk and understand more about the illness.

The volunteer visitor would recommend it to ‘relatives and friends of people who are living with dementia, community workers or artists who want to work with people living with dementia’ because ‘[it] would improve conversation skills… I suspect that there are many training courses on what dementia is and how to look after people, but this training has the potential to offer practical approaches to understanding how better to communicate with others and to reflect on these skills’. The care home manager believes that ‘more work’ needs to be done in the training carers already receive because ‘they do not always use their training effectively’.

How beneficial is it to all participants?

This training programme was very beneficial for all the participant residents in Redbond Lodge Care Home according to its home manager who qualified this statement by adding that ‘it has made a visible difference to the residents’ lives bringing the generations closer together and help build up outside relationships; it has also emphasised the importance of the feel-good moment enhancing residents’ well-being’.

The deputy head of the school agreed that this programme was very beneficial to the students, especially the visits to the residents and ensuing formal discussion among themselves and/or with teachers. She added that ‘it has developed their communication skills, alongside their empathy and understanding. Those of them studying psychology (or) applying to medical school have found this of great practical value’

All the visitors (students and the volunteer community visitor) enjoyed the experience and they got out of it what they thought they would when they volunteered.  They volunteered for a variety of reasons, but mainly because they wanted to gain a better understanding of the condition:

• I know how lonely it can be to have dementia and so thought having a bit of change each week / something to look forward to would be nice for them to have
• To understand the reality of dementia and the symptoms that go along with it.
• I like to volunteer and it looked like a great experience. To help people that don’t always have someone there for them.
• Because of a relative and knowing it was hard, and how to combat this.
• My grandma had dementia and I was always scared to go and visit her as she wouldn’t know who I was. So I wanted to learn more about the illness and how to talk to people with dementia.
• To improve my knowledge and understanding of dementia and how to have conversations with people who are living with dementia.
• To deepen my understanding of … dementia, but, also to improve how I communicate; … that was the thing that was particularly interesting for me…an opportunity to look at communication.

The benefits to these visitors from this experience were tangible in their responses:

• I now understand and can implement the techniques for talking to people with dementia and have an insight into how they may feel.
• I found out how to make a sustained conversation with someone who had difficulty remembering the past but also didn’t like to talk about her present.
• I feel more comfortable and confident with talking to dementia patients.
• A warm feeling of being there for someone. An idea on how to communicate better with Amelesia patients.
• Understanding about the disease and knowledge of what to do in the situation.
• I now feel I have a better understanding of the people and how it’s not their fault and you should treat them normal. I now know the questions to ask.
• I just wanted to do the course because our grandma did have dementia … we were much younger, so we didn’t know how to speak to her … it was great to find out how .. to make it easier for them … for the conversation to flow … the questions to ask … stuff like that … I got a lot out of that … and how to actually speak to people who can’t necessarily remember …
• an opportunity to get to know D (the resident)

In addition, if they had had any expectations, and some had not, these were fully met:

• For me the conversation was what I expected … on the same topic … she really liked talking about it …because each time she’d bring another detail’
• I really don’t know if I had many expectations … Surprised by how ‘…the way that memory would come back in little bits…how bits of memory would come back … over the course of the conversation…

Is the design appropriate? (Appendix 1)

By design is meant structure and content.  Structure includes the duration of the complete programme (eight weeks), the length of the visits to the residents (thirty minutes), the number of the planned visits (six) deemed sufficient to gauge feasibility for the training programme, the amount of face-to-face training (one session), the length of the face-to-face training (one hour and fifteen minutes) and the amount of time set for each interactivity (five minutes for each role-play and puzzle games) in the face-to-face training session and the order of the sessions and visits: week 1 visit 1 with no preparation, week 2 face-to-face training, weeks 3, 4, 5, 6, 7 visits to residents with objectives set out on the website each Monday morning at 09.00 hrs (visitors were instructed to look at these objectives before their visits to the residents each week), week 8 evaluation. The content encompasses the ideas underpinning the programme, the learning activities in the face-to-face training session in week 2 and the post-activities reflections by the visitors completed and posted onto the website.

The structure

Visits to residents: in response to questions in the questionnaires and in discussions during the verbal evaluations visitors to residents said that the suggested length of each visit (thirty minutes) was about right. Of the seven planned visits, the community visitor made five, one student made four and the rest of the students made three visits each. Sickness and school commitments affected the number of visits made. The Deputy Head of the school said, in her evaluation,  that in a subsequent participation by another group of students the programme would be formally inserted in a school programme of study such as a ‘community service programme’. The eight weeks planned for the entire pilot was about right, said all the visitors. They made some valuable suggestions in their responses to questionnaire question 3.5, and in the verbal discussions (which will be implemented in the revised design of the training programme for wider applicability). For example:

• one training session is not enough;
• one training to three visits ratio; doing personalities before role play;
• maybe change the structure so the teaching is more dispersed;
• have a session on how to deal with the dementia before you start, in the middle and one at the end to help development;
• have a basic face-to-face session at the beginning then a more detailed one further down the line, the more you get to know your resident;
• visit a variety of people so that you can understand the complexity behind dementia and that multiple ways are available to approach situations;

Duration of the pilot: besides the above suggestions, eight weeks were ‘about right’ for the pilot, said all the visitors (questionnaire 3.5) and the length of the visits – thirty minutes – was the right amount of time, though one student suggested forty-five minutes could also be okay, provided ‘more structured aims were given’. An interesting comment to make in the light of the fact that objectives were set each week and posted on the dedicated website. Did this student forget? It is a possibility worth noting for the revised design of the programme: maybe students need a regular reminder and not rely entirely on their independent learning.  Indeed, this was something that the deputy head of the school said she would do differently: formalise the weekly completion of the reflection. This activity would need to be preceded by knowing the objectives before the visits in order then to complete the reflections post visits. The number of visits made suggests that these need to be inserted in a formal study programme as suggested by the deputy head-teacher in her evaluation. Five of the pilot students made three visits of the six planned, one made four visits and the volunteer community visitor made five. The timing of this programme coincided with the students’ busy time in the first half of the first term in the academic year when they are busy with their UCAS applications. In addition two-weeks half term were scheduled in the middle of the pilot. However the school’s deputy head said that it the students’ normal studies were not affected by this programme because they were high achieving students.

The content

The content of the pilot programme was deemed appropriate by all the participants. It consisted of six visits to residents, one face-to-face training session and one evaluation discussion at the end: eight weeks in total. Each week assumed a one-hour total commitment between the thirty minutes visits and about thirty minutes writing the post-visits reflections, excluding travel time.

The face-to-face training: in this session ¹ visitors (eight students and one community visitor) were asked to compare the quality of interactions between themselves and a person diagnosed with dementia-type symptoms before training on more effective conversational gambits and after the training. They were asked to do this in a number of ways:

1. by immersing themselves into the roles of resident and visitor (working in pairs), before the training and after the training;
2. by solving puzzle games (in three groups);
3. in between a) and b) by being introduced to the three core ideas underpinning this programme (unmindfulness versus dementia, whole person versus fragmented person, fusion of time and space) and by learning about different question formations which lead to sustained dialogue and how to pick up cues and give prompts;
4. as a group by identifying any differences between the first role play (before training on question formation) and the second role play (after training) in interactions and conversations between ‘visitors’ and ‘residents’
5. by looking at extracts from the memoir Thank you lady as examples of fusions of time and space (in the mind of the affected person) and examples of the whole person vs the fragmented person presenting in different contexts.

The session was evaluated with four different methods: 1) during the session participants wrote down their reflections in answer to four questions after role play one and after role play two; 2) after the session with reflections posted on the website; 3) at the end of the programme with the written questionnaire and 4) with the verbal discussion.

Role plays and puzzles…

Visitors enacted two role plays in pairs: one acted the part of the resident, the other the part of the visitor. Each of the pair picked one unseen card, telling him or her which role to play: R (resident) or V (visitor). They acted out the roles for five minutes each time. They were not given any instructions on how to play the roles.  This was deliberate because I was interested in obtaining an accurate idea of how people feel when in the unfamiliar situation of communicating, both as a confused person and as the ‘healthier’ visitor. After each role-play they were asked to write down, on blank sheets of paper, their thoughts in answer to the following four questions:

1. how did you feel being the resident or/and the visitor?
2. what challenges did you experience during this interaction?
3. what did you think of the person in front of you?
4. how did the conversation flow?

In between the two role-plays the visitors were introduced to the idea that we need to change our attitudes towards people diagnosed with dementia-like symptoms because there is too much stigma associated with the word ‘dementia’ and this affects how we view those affected by the disease and the way we interact with them. To paraphrase I suggested that:

to affect these changes we need to see those affected by the condition as whole people, not fractured as professionals keep telling us they are. There is a whole person in front of us. We just can’t see it. It is possible to hold a conversation with them. We need to learn how to do this. In order to achieve these goals we need to see dementia as a disability and not a madness. The name dementia means madness. It is time to stop using this term and consider an alternative: we discussed the noun Amelesia. Ameles means unmindfulness in Greek; with the suffix –sia at the end it means the state of unmindfulness. In addition, it was suggested that, with careful questioning and picking up conversational cues we can identify logical meaning in the apparent meanderings of a confused mind. We assume that they make up stories and mistake events and mix up memories up. I suggested that this is the result of a fusion of time and space, not of made-up stories that did not happen.

Do participants’ answers to the above questions suggest that this new knowledge made a difference between the first and the second role play?

The responses were very positive and suggest that the new ideas discussed after role play one affected changes in the conversations played out in role play 2. Whilst conversation was either a struggle or ‘okay’ during role play one (the greatest challenge in response to question 2 above), it became easier in role play 2, as the following quotes from answers to question 4 suggest:

Role Play 1

Role Play 2

Other comments on role play 2 were very specific about improved interactions due to asking more open questions:

The questions were more open and easier to answer and communicate; communication flowed a lot better than the first one

Using the open questions helps to open the person up more, to elaborate and to see the personality come through of the individual

The use of the yes/no questions were easier to elaborate. The questions weren’t as direct and I think it made it easier for the resident to answer, She also led the question and conversation and allowed me to talk about myself; said open questions which allowed me to talk about something different, which continued the conversation which was nice

This greater confidence in asking and answering questions was also apparent in responses to the third question (what did you think of the person in front of you?), from both perspectives of ‘resident’ and ‘visitor’. For example from ‘residents: ‘she (visitor) made me feel very comfortable talking about myself and my experiences; friendly, good at keeping conversation going, the person asked good questions that were easy to answer. From the visitor: ‘great, easy to talk to, passionate and knowledgeable’; ‘managed to feel able to ask more personal questions about her feelings’

One aspect of the role plays that also seemed to change between role play one and role play two was a feeling, on the part of participants, of awkwardness and feeling uncomfortable. I wondered whether this meant awkward in playing the roles because they did not know how to act out the part of either a resident or of a visitor in this ‘dementia’ context, or whether it was because they were acting in front of their friends (having no or little experience of role playing) they said that maybe it was a bit of both:

it’s a bit difficult to know…how to act as if you have dementia…what it’s like, what you would feel like, so that is really difficult…to really know what to say

They would have liked some acting directions and guidelines:

feel like, so it’s a bit difficult to know…how to act as if you have dementia…what it’s like, what you would that is really difficult…to really know what to say

we were not sure about the ground rules; N was my resident partner to imagine themselves as resident and need to make up a back story or use their own lines and think of memory was so hard.

Reflections after the face-to-face training session

Five of the nine participants to this session wrote and posted their reflections on the whole session onto the website by taking the following questions as guidance.

1. How did you feel at the end of the face-to-face training session?
2. What was new and different to what you knew before about dementia?
3. How does this new aspect make sense to you?
4. How would you change the session if you wanted it different?
5. Anything else you’d like to add?

None of these five respondents suggested any additions (question 5), one said that it would be helpful for the next visit to the resident and one said that it was ‘a well-planned and interesting session’. The only changes they would like to see (question 4) are clearer instructions on the role plays:

I should have liked for the role playing sections to have been explained a bit more because me and my partner were a bit confused at the start.

Before the role play I would specify with the students who are the ‘residents’ whether they are to act as though they have dementia or just have a conversation because I got quite confused with this aspect of the session

In answer to question 1 (how did you feel at the end of the face-to-face training session?) all five respondents gave very positive responses. They felt better prepared and more confident on how to approach a visit to a resident at the care home. One complete response reflects all others:

I felt like I had learnt about how to have a sustained conversation with the patients by asking more open questions and allowing them to have more space in the conversation with their answers in order to not confuse them or cause any negative feelings.

The comments suggest that the design and content of the face-to-face training was successful in achieving the first aim of the session: to acquire skills in conversational gambits in order to engage the partner resident living with dementia in sustained dialogue.

In answer to question 2 (what was new and different to what you knew before dementia?) three respondents said that they had not known about different types of questions and how each type elicits different responses, i.e. that some are more effective than others. They also had no previous knowledge of the true meaning of the word dementia:

The background of the word dementia was new to me and so was (sic)  the different form (sic) of questions that we ask.

One person mentioned the puzzle in particular – the puzzle game where you understood how confused they got likewise (sic) with the puzzle.  Another talked about the effectiveness of using extracts from the memoir to illustrate how to find out ‘where’ mentally ‘the mother was, or who she was talking about so that they understood more clearly what she was remembering or talking about’.

The responses suggest that all the content was relevant and meaningful. It seems that they understood the metaphor of the puzzle games. Puzzles are good tools for identifying clues in the residents’ utterances (and body language) in order to place them next to other clues and slowly build up a picture of what the resident is imagining or thinking about at that particular moment. That these participants had not known the true meaning of the word dementia is both worrying and encouraging because it suggests that this programme may be on the right track: attitudes need to be changed and can be changed.  

In answer to question 3 (how does this new aspect make sense to you?) four of the five respondents commented again on the importance of asking the right questions:

It does make a lot of sense (that) there are different ways to ask questions and the question to answer.

The true meaning of the word dementia was a surprise:

I see why, given the meaning of the word dementia, Mina would like to change the definition and connotations that the illness brings.

It has helped to get an understanding of how to communicate in a way that is friendly and not speaking down

At the end of this session there was good appreciation that different types of questions have different results, some being more effective than others. Also encouraging is the comment on the word dementia. All this suggests that the aim of changing attitudes may be achievable in a wider context.

In conclusion, findings from all the instruments used to evaluate the face-to-face training session suggest that: 

• It was too short: I think it should be at least 30 minutes longer. It could be split into three short sections: one session on the concept of the whole person versus the segmented person, one session on conversational gambits, and one on time and space fusion.
• If one session is used again I would sequence it differently: 1) talk about the whole versus the segmented person; 2) dementia characteristics with extracts from publications; 3) puzzles; 4) questions; 5) role play with more time and instructions.

In response to the questionnaire the care home manager who observed the face-to-face session agreed strongly that the communicative approach would make a difference in engaging residents with mild to medium symptoms of dementia.  

The most needed change has to be preparation for the first role play: participants were ‘thrown in the deep end’, metaphorically speaking. The instructions were simple: pick a card from two available cards, you are playing what the card says – visitor or resident – and you have five minutes to chat. Very stark instructions This was deliberately done to make visitors feel what it’s really like to be a resident faced with a barrage of questions, or embarrassed silence and awkward smiles from visitors who do not know what to do or say. As one student said ‘I think it’s hard to get into the mind of someone with dementia as no one knows what they think’. This of course is partially true. There are a number of publications which attempt to interpret what may be going on in the mind of people living with brain disorders: Still Alice (Genova, 2007),  Someone I used to know (Mitchell, 2018) , Elisabeth is missing (Healey, 2014).  Indeed references were made in the face-to-face training session to extracts from the memoir Thank you lady (Drever, 2017). However, it was agreed in the evaluation discussion that these references would be better made before the first role play to give an idea of how to get into role. In addition instructions for the group dynamics also need to be made explicit. All in all, responses were split to the questionnaire question 2.2 ‘the role plays were helpful in making you focus on the challenges involved in sustaining dialogue with people with this condition’: three participants agreed (graded 2) with this statement , three were not sure (graded 3) and one disagreed (graded 4).  Also split was the question on whether the five minutes allocated were sufficient. But they all agreed strongly that some instructions on how to get into role would have been helpful. All these responses will advise the revised design of the training programme.

The puzzle games were unanimously (100%  – six out of seven respondents said they agreed strongly and one agreed – (questionnaire question 2.3) perceived as ‘useful in reinforcing the idea of picking up cues /clues / giving prompts and scaffolding in order to sustain dialogue. In the discussion one participant added:

‘…I just thought that the puzzles were a very clever way of just being able to introduce, with the different levels ….I thought illustrated your points very well …they were well chosen and conveyed …the ideas you wanted

There was a split response as to whether enough time had been allocated (57% saying yes, one respondent said no and two were not sure). In the revised design more time will be allocated to this activity. As one student put it: ‘more time spent on the puzzles would have been preferable just to reinforce the ideas of it being a metaphor for their thought processes’; another student said that ‘this was a good way to show dementia’.

4. How onerous and disruptive is it to the normal routine of students, school and care home?

The students in this pilot found it difficult to fit in the number of visits that had been envisaged. Seven of them made three visits and one made four visits. The actual programme was not onerous in the sense of burdensome, only in terms of time, fitting it in with their studies, half term falling in the middle of the programme and applications to universities. They all enjoyed the experience and think that other students would benefit. For their deputy head-teacher fitting it in with everything else students and she have to involved with was the most challenging as well as arranging transportation from the school to the care home. She suggested that this programme should be formalised in a community experience programme or any such programmes that individual schools offer as extra curriculum activities. As for the care home in Dunmow, the care manager said that it was only a little bit onerous but that it was very beneficial to the residents:

I feel it has made a visible difference to the residents’ lives. Bringing the generations closer together and helping build outside relationships. It has also emphasised the importance of the feel-good-moment enhancing residents’ well being

5. Does it change attitudes towards people living with dementia and towards the disease itself?

Yes, by the end of the programme all participants changed their attitudes on a number of levels:

1) seeing people affected as disabled and not as mad; 2) that it is possible to identify the core personality of the person obscured by the disabled mind;  3) that they live in a sort of continuous present because past events come into their minds, often, as if they are happening now, a sort of fusion of time and space; 4) that it is possible to have meaningful and sustained conversation by adapting the way we use our language. The process of change began even before any training took place. After each session in the training programme and during the face-to-face training session  participants were asked to reflect on some key questions.

1. Madness or disability? In response to the question – ‘what do you know about dementia and how it affects people?’ –  in the reflections after their first visits to the residents suggest that at the start of this pilot project visitors had a text-book, mainstream idea of dementia, namely that long term memory is accessed better than short term memory, that cognitive functions are impaired and that there are damages to personality traits.  Some responses included the need to learn more, for example:

I thought it only impeded the memory, but it also damages the awareness of time, I thought I knew about dementia but it appears that I know little but I would like that to change so that I can be educated in this

…it affects the person memory, typically their short term memory and so they tend to remember stuff that happened when they were younger, They also struggle to put event to a time period

It is a mental degenerative disease that affects the memory, cognitive function and a person’s physical abilities at times.

Responses to section 2.1 in the questionnaire (Appendix 2) suggest that, by the end of the programme, these participants were convinced of the ideas presented to them in the face-to-face training session, namely that: people with these symptoms associated with dementia-type conditions are not mad , rather they resemble more the state of unmindfulness, i.e. not being in the present. All these visitors agreed strongly or agreed that this is more likely to be the state of mind rather than insanity as implied in the word dementia. Five of the same participants agreed also that Amelesia could replace the word dementia to describe the state of confusion and jumbled up memories in order to destigmatise the condition and the people affected by it. Two of the respondents did not express an opinion either way.

Even from week 1’s reflections on the first visit – which all participants posted on the dedicated website – it was evident that attitudes can change before any training took place.  For these visitors it was simply a matter of suggesting that they might consider the difference between what they expected before the visit and what they actually experienced. For example:

I thought that it would be hard to talk to them but it wasn’t as bad.

I was a little nervous and expected conversation to be difficult at times, but I did not find this when I went in.

2. Core character? Also from week 1‘s reflections participants were asked to think about whether they could identify the core character of the resident they were visiting.

One current attitude towards people diagnosed with this condition is that the person affected is no longer the same person. This training aims to turn this dogma upside down by denying it completely. It suggests instead that each person, whether living with this condition or not, does not present the whole character at any one time, just as we do in ‘normal’ life. We present different traits of character and personality at different times and in different contexts. Consciously or unconsciously.  Whether we have this condition or not.  A first step is to identify, during a first interaction between visitor and resident, any clues in the resident’s conversation that suggest an overall personality type.

With question four (Q 4) of the first week’s reflections – (What kind of a person do you think this person was before dementia? Any clues as to whether s/he was a happy/sad person….bossy/easy going…calm/angry….use your own words) – these visitors were able to suggest an overarching personality with some reference to how they reached their conclusion:

I think this person was happy, she said she lived with her husband, five goats and three cats, she also seemed quite calm before, and the stories of life before dementia were delightful to hear.

(She) seemed like quite a fun and stylish individual, as when we sat down and went through the magazine she would immediately comment on the range of different clothing; then crack jokes about how ridiculous they looked.

He seemed quite regretful of some of the decisions he had made but seemed quite content with the life he ended up living.

Respondents to the evaluation questionnaire question 2.1.1 also agreed with the premise that it is possible to recognise the core trait, or the most dominant aspect, of a person’s personality diagnosed with dementia-like symptoms.

3. Fusion of time and space? Six out of seven – 86% – respondents to the questionnaire question 2.1.2 – agreed that it is possible that ‘the mind of a person living with dementia lives and relives his or her life experiences in a fusion of time and space’

4. Conversational gambits? The face-to-face training session suggested that three conversational gambits might be effective in sustaining a dialogue with people affected by memory and confusion: asking open-ended type questions, picking up cues from the affected person and giving prompts. There was unanimous (100%) agreement, in responses to the questionnaire questions 2.1.3 , that this was the case with picking up cues, six of the seven respondents (86%) also said that prompts are as effective whereas one could not say either way. Two could not express an opinion in the case of open-ended questions, while five thought that this type of questions does lead to sustained dialogue.

Some of the visiting participants might have had a natural sensitivity to picking up cues and giving prompts even before the training, as they suggested in their week 1 reflections in answer to the question ‘how did the chit-chat go?:

At first I wasn’t really sure how to get the conversation going but she commented on my necklace that I was wearing and I went from there really. I believe it made it a lot easier having the magazine nearby as it made the conversation flow a lot easier as there were clear talking points we could both use.

Chit-chat was flowing for the entire session, topics ranging from pets to garden. I think she enjoyed talking about the garden because she particularly enjoyed sweet peas.

¹ The home manager at Redbond Lodge care home joined this training session both as an observer and participant. The deputy head teacher and another teacher from Felsted school also observed this training session but did not participate.,/span>