Appendices

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Appendix 1

A communicative approach to conversations with people living with dementia – a programme overview

1. Visit 1 to partnered resident in Redbond Lodge Care Home

2. Write reflections on the visit with guidelines on dedicated website

Face-to-face training with Mina Drever at Redbond Lodge Care Home

1. Become acquainted with the core aims of the training programme: change attitudes

2. Discuss week 1 visits and reflections

3. Role play 1: unprepared, working in twos, play the role of either resident or visitor on a first visit

4. Write down reflections on this role

5. Discuss ideas underpinning aims

6. Discuss impact of a name: Amelesia versus Dementia

7. Discuss communicative approach to enjoyable / sustained dialogue

8. Learn question types that lead to sustained dialogue and other conversational gambits

9. Read examples from memoir Thank you lady

10. Role plays again

11. Write down reflections on second role play: what was different

12. Puzzle games

13. Discuss whole person versus segmented person

14. Read extracts from memoir Thank you lady

15. Discuss the idea of fusion of time and space

16. Read extracts from memoir Thank you lady

17. Closing discussion: wrap up

18. Write reflections on this session and post on website before visit 2 to residents

Visits to residents at Redbond Lodge Care home

Reflections on each visit posted on website

Verbal and written evaluations

Appendix 2

Written evaluation by students and community visitor – questionnaire

Dear students and community visitor,

Thank you for taking part in this pilot programme. Your participation in the programme and this evaluation are crucial to determine whether the programme could have wider applicability. If it does, it is important to know what worked well and which areas, if any, need improvement. To remind you: the programme was designed to run for eight weeks. Week 1 you made a first visit to the residents at Redbond Lodge without any preparation. Week 2 you had a face-to-face training session with Mina. Week 8 is the evaluation: this written questionnaire and a group discussion. The evaluation focuses on three aspects of the programme:

1. Visiting the residents
2. The face-to-face training
3. Personal impact of the programme

Please circle who you are:

S1    |    S2    |   S3    |   S4    |   S5    |   S6    |   S7    |   S8  |    C1

SECTION 1 – VISITING RESIDENTS AT REDBOND LODGE

Q 1.1 – How many visits were you able to make?

1    |    2    |   3    |   4    |   5    |   6

Q 1.2 – If you did not make 6 visits, what was/were the reason/s? (choose as many as you like)

1. lost interest in the project
2. found the visits emotionally challenging
3. interfered with your studies
4. transport availability
5. other reason/s: please tell me if you can

Q 1.3 – Did you enjoy the visits that you made?

1. Yes, they were really good
2. They were good
3. They were okay
4. I did not enjoy them very much
5. Not at all

Q 1.3 – Did you enjoy the visits that you made?

Yes    |    No

If not, what would you suggest to be ideal/more appropriate?

SECTION 2 – THE FACE-TO-FACE TRAINING

Q 2.1 – The following ideas underpinned the training programme

1    |    2    |   3    |   4    |   5    |   6

Q 1.2 – If you did not make 6 visits, what was/were the reason/s? (choose as many as you like)
Please circle the degree of your agreement with the statements

1) It is possible to recognise the core underlying personality of a person diagnosed with dementia-like symptoms

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

2) The mind of a person living with dementia lives and relives his or her life experiences in a fusion of time and space

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

3) It is possible to hold a sustained dialogue with a person with dementia symptoms, at least with stage 1 symptoms, by using more a) open-ended questions, b) picking up cues and c) giving prompts

a) Open ended questions

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

b) Picking up cues

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

c) Giving prompts

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

4) People with these symptoms are not mad as the word ‘dementia’ says they are

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

5) These symptoms resemble more the state of unmindfulness, i.e. not being present in the moment

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

6)  Replacing the word ‘dementia’ with Amelesia – which in Greek means ‘the state of unmindfulness’ – would distigmatise the condition

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

Q 2.2 – The two role plays
Please circle the degree of your agreement with the statements

a) The role plays were helpful in making you focus on the challenges involved in sustaining dialogue with people with this condition

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

b) The 5 minutes allocated to each role play were sufficient

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

c) Some suggestions or guidelines on how to get into the role plays would be helpful

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

4) Please add any further comments if you wish about role plays

Q 2.3 – Puzzle games
Please circle the degree of your agreement with the statements

a) The puzzles were useful in reinforcing the idea of picking up cues / clues / and giving prompts in order to sustain dialogue

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

b) The time allocated to the puzzles was sufficient

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

c) Please add any further comments if you wish about the puzzles

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

SECTION 3 – PERSONAL IMPACT OF THE WHOLE PROGRAMME

Q 3.1 – Did you enjoy this experience?

Yes    |    No

Q 3.2 – What did you get out of it?

Q 3.3 – Why did you volunteer to participate?

Q 3.4 – Were your expectations realised?

Yes    |    No

Q 3.5 – Were 8 weeks too long or about right?

Too long    |    About right

Q 3.6 – What changes would you make if any?

The following questions are for students only:

Q 3.7 – This programme is suitable for which sixth form year group?

Y12    |    Y13   |   Either

Q 3.8 – Would you recommend it to other schools?

Yes    |    No

Q 3.9 – Please explain your answer to question 3.8

The following questions are for the community visitor only:

Q 3.7a – Would you recommend this programme for other people?

Yes    |    No

Q 3.8a – which group of people?

Q 3.9a – Why?

Q 3.10 – Do you see yourself continuing to visit the resident occasionally?

Appendix 3

Written evaluation by Deputy Head, Felsted School

Dear Karen

Thank you for allowing me to carry out this pilot training programme with a small number of sixth form students from Felsted School.

The pilot programme aims to test the premise that attitudes towards people living with dementia can be changed by a) proposing a communicative approach to interactions with people living with dementia and, b) by proposing changing the name of the condition from ‘dementia’ to ‘Amelesia’. The pilot consisted of eight weeks: one weekly visit, for six weeks, by the students and one volunteer visitor to residents living at Redbond Lodge Care Home in Great Dunmow, one face-to-face  training session at Redbond Lodge, which you observed, with the students and volunteer visitor, and a group evaluation in week eight.

It is important for the pilot to have your thoughts and opinions from the perspective of managing the students’ participation. I would be grateful if you would complete this short questionnaire.

Please circle the answer closest to your opinion.

Q 1 – How beneficial has participation in this pilot been for the students as a group? 

1. Very beneficial
2. Beneficial
3 Neutral
4. Not beneficial
5. Not beneficial at all

Q 2 – Which parts of the programme have been the most useful to the students, from your perspective? Please tick as many as you like:

1. Visits to the residents
2. Face-to-face training
3. Post-visits reflections
4. Informal discussions among themselves and/or with teachers at school
5. Other: please tell me

Q 3 – What, in your opinion,  have the students gained from this experience?

Q 4 – How has this impacted on their studies in general?

Q 5 – What has been the most challenging aspect of the pilot for you to manage?

Q 6 – What would you change?

Q 7 – Do you think students, in general, would benefit from this type of programme?  Yes or No?

If yes:

a) which year group?
b) for how long?
c) condensed in one / two weeks / more?
d) six weeks as the pilot?
e) other? 

If no: why not?

Q 8 – Are you happy for Felsted School to be mentioned in all writing and on the website?

Q 9 – Please add anything else I have not thought of.

Thank you for completing this evaluation form and for your school’s participation. I am most grateful.  16/11/2018

Appendix 4

Written evaluation by Home Manager at Redbond Care Home

Dear Sue

Thank you for allowing me to carry out the pilot training programme in Redbond Lodge. This involved a number of sixth form students from Felsted School and one volunteer visitor. 

The pilot programme aims to test the premise that attitudes towards people living with dementia can be changed by:  a) proposing a communicative approach to interactions and, b) by changing the name of the condition from ‘dementia’ to ‘Amelesia’. The pilot consisted of eight weeks: one weekly visit by the students and visitor for six weeks, one face-to-face training session at Redbond Lodge, which you observed, with the students and volunteer visitor, and a group evaluation in week eight.

I am now carrying out the evaluation of the programme with the students, the school’s deputy head teacher and the volunteer visitor. It is important for the pilot to have your thoughts and opinions from the perspective of managing the Home’s participation. I would be grateful if you would complete this short questionnaire.

Please circle the answer closest to your opinion.

Q 1 – Having observed the face-to-face training, do you agree or disagree that the communicative approach would make a difference in engaging residents with mild symptoms of dementia? 

Agree strongly    |   Agree   |   Neither agree nor disagree   |   Disagree   |   Disagree strongly

Q 2 – Overall, how beneficial has it been for the Residents visited by the students and by the volunteer visitor?

Very beneficial    |   Beneficial   |   No difference   |   Not beneficial   |   Not at all beneficial

Q 3 – Would you please explain in a few words your answer to question 2 (Q 2)?

Q 4 – How disruptive was it to manage these visits? Choose as many alternatives as you want:

1. Not at all disruptive
2. Quite disruptive
3. Somewhat time consuming
4. Other:

Q 5 – How onerous – in terms of time spent on it which detracted from other responsibilities – was it for the administrator at Redbond Lodge to apply for DBS certificates for each visitor?

Not at all onerous   |  A little onerous   |  Okay   |  Onerous   |  Very onerous

Q 6 – Would you have a similar group of students again?  Please choose yes or no and explain your answer

a) Yes – Why?
b) No – Why?

Q 7 – Do you think carers might benefit from the face-to-face training that you observed and which you have graded in question 1 (Q 1) above?   Please choose yes or no and explain your answer

1. Yes – Why?
   b) No – Why?

Q 8 – Please add anything else I have not thought of.

Thank you for completing this short questionnaire. Dated Week of 12/11/2018

Appendix 5

Evaluation – verbal discussion recorded with powerpoint slides as prompts

SLIDE 2 – general comments

1. Have you enjoyed the experience?
2. Why did you volunteer?
3. Did it turn out as you expected?
4. What was the greatest challenge
5. One thing/memory/skill you will take away with you?

SLIDES 3 & 4 – the face-to-face training – session 2 of the programme

1. Was it long enough?  (75 minutes)
2. Was the content appropriate? Would you add anything else?
3. Role plays: would you have liked instructions/guidelines? Or was the way it was done okay, i.e. as a self-discovery / ethnographic/ up-the-garden-path approach?
4. What you  mean by comments in your written reflections about being confused / embarrassed / during the role play? Did you mean you did not know how to start a conversation with a person living with dementia / being embarrassed in a role play in front of school friends? Or both?
5. What did you think of the puzzles as a metaphor for looking for clues / giving prompts / looking for a pattern / scaffolding / building up a picture?
6. Were the examples from the memoir Thank you lady  appropriate / helpful?
7. Was the order of the content okay as it was or would you prefer it to be changed?

SLIDES 5 & 6 – whole – versus the segmented person

SLIDE 7 – fusion of time and space

SLIDE 8 – findings from written reflections after visits to the residents at Redbond Lodge

Please explain / clarify / expand on some of the comments e.g. ‘awkward’
What sort of guidelines would you have wanted for the role plays?
Why did you like the puzzles?
Additional comments on subsequent visits

SLIDE 9 – have the aims of the programme been achieved? Yes / No

1. Do people affected by dementia feel good about themselves with this approach?
2. Do you agree that dementia is a disability not a madness?
3. Can you see the whole person behind the disability?
4. Is the design of the programme appropriate?
5. Is the face-to-face training content appropriate / effective?
6. Are the visits useful / helpful / effective?

Appendix 6

The visitors (eight students and one participating community visitor) made visits to nine residents at Redbond Lodge Care Home in Great Dunmow, Essex. The Home Manager selected the residents on the basis of two criteria: 1) they were identified as having low to medium levels of dependency based on form QF 010; and 2) stage 1 symptoms of Alzheimer or other dementia based on form QF 106. These forms are adapted forms used by Runwood Homes. Redbond Lodge is one of this group’s care homes.

QF 010  Modified Barthel Dependency Scale Dependency Scales
QF 013  Assessment of needs
QG 106 Mental Capacity Assessment Stage 1

QF 010  –  Modified Barthel Dependency Scale Dependency Scales

This form is used once the resident has been given residence at Redbond Lodge Care Home. This is carried out by a care manager and reviewed monthly. There are twelve categories in this assessment, from A to L. Three are pertinent to this programme: J. communication; K social dependency and L Behaviour. Communication and social dependency are on a 5-point scale, from 0 to 4. Behaviour from 0-10 on an 8-points-scale: zero indicates no or little assistance required.

QG106 – Mental Capacity Assessment 2014 Version 1

This is a qualitative form written by the receiving carer in the Redbond Lodge Care home, in conversation with the resident.