The Pilot Programme – Working hypothesis

The pilot programme predicted that our perception of dementia would alter by:

  • eliminating the use of the term ‘dementia’ which has become a stigma
  • seeing people diagnosed with this condition as essentially the same people disabled by events occurring in their brains
  • adapting the way we communicate with affected people so that interactions are enjoyable and meaningful

Design, location and participants of the pilot training programme

The training took place at Redbond Care Home in Dunmow. The manager at Redbond, Ms Sue King, has given full support to the ideas put forward in this pilot training. She is very committed to changing attitudes towards people living with dementia. She agrees with the position taken that the term ‘dementia’ needs to be reconsidered because by itself it is a negative label that diminishes the person affected by its meaning and stigmatises a plethora of medical conditions with common symptoms.

Participants to the programme

The participants were: Redbond Care Home in Dunmow, eight Year 13 students from Felsted School 1, one community visitor, nine residents at Redbond Lodge. All visitors were volunteers 2 to the programme and therefore self-selected. Residents were selected by the Care Home Manager on the basis of their low-to-medium dependency needs and on levels of their mental ability to make their own decisions, as assessed by their key-carer on arrival at Redbond Lodge (Appendix 6).  On this basis they were asked if they wanted to have a visit by a visitor and some of their families were also asked if it was okay with them, for their relative resident to be visited. All visits took place in communal areas, sitting rooms or dining room. At no time were the visitors alone with the residents.

1 Felsted School, Felsted Dunmow, Essex CM6 3JL

2 All visitors were checked for a DBS (Disclosure and Barring Service) clearance. However it has been since ascertained with the DBS Office that 16-18 year old students do not need to have a DBS check for the purpose of visiting residents in communal areas. DBS certificates are necessary only if visitors enter into regulated activities in care homes (www.crbdirect.org.uk)

Representativeness of participants and recruitment onto the pilot training programme

The participants do not constitute a statistically representative sample, but they represent an appropriate group of people for whom these ideas have been developed: eight sixth form students, eight people living with dementia-like symptoms in the residential Redbond Lodge Care Home in Dunmow, the manager of the care home. They were identified and recruited onto the pilot training programme with the following procedures:

  1. The residential care home: the ideas for the project were discussed with the manager of the Redbond Lodge Care home, Sue King. Ms King agreed for the pilot programme to take place in Redbond Lodge because she believes that there is a need for society to change its attitudes towards people living with dementia-like symptoms.
  2. The Sixth Form students: after initially approaching a small number of local schools with the proposed idea of a pilot training programme, Felsted School enthusiastically embraced the idea. The headteacher responded positively to an initial email after discussing it with the deputy head responsible for health, safety and safeguarding at the school, Karen Meghany. Ms Meghany discussed the idea with students in Year 12, twelve of whom volunteered to participate. In the event, for a number of different reasons, eight students participated in the complete programme. Withdrawal from the programme by four students was affected by lack of documentation needed to obtain a DBS (Disclosure and Barring Service) certificate, demands of their A level course studies and UCAS (Universities and Colleges Admissions Services) applications. By the time this training programme took place (first half of the autumn term 2018), the students were in Year 13.
  3. The volunteer community visitor identified herself and self-selected as follows: after a presentation of the proposed training pilot at a local school, the Head of the Sixth Form wrote to parents about the programme informing them that some of the students may participate. In the event none did from this school, but one parent was interested and made contact. She participated in the whole programme.

The residents of the care home: residents (six of low dependency care needs and three of medium dependency level) 1 were selected by the home manager at Redbond Care Home and paired with each student. Seven females and two males. As explained above the residents were asked if they wished to talk to a young visitor, a student from a local school. They all said that that would be very nice. Family members were also asked if they were happy for the students to visit and chat with their relatives. They all said yes.

1 This assessment is carried out with modified Barthel Dependency Scales adopted by Runwood Homes, the parent company of Redbond Lodge Care Home in Great Dunmow.

Dedicated website and anonymity

A dedicated website was constructed for the sole purpose of running this pilot. Each participant received a password to enter the training pages on the site. Each visitor was given an anonymity code. No names were entered at any time. Visitors chose a code for the duration of the pilot.

Duration of the pilot programme

The training programme took place over eight weeks during September, October and November 2018.

This period of time was sufficient to gauge any changes in attitudes and any feasibility for the wider application of the training programme and what changes need to be made, if any, to the programme design and its content. The planned programme was as follows:

  • each visitor was partnered by the managers at Redbond Lodge with a resident;
  • during the programme visitors were to make 6 visits, one a week, lasting about 30 minutes, to the partnered resident: weeks 1, 3, 4, 5, 6, 7 of the whole programme;
  • before each visit, by 09.00 hrs on the Monday morning, aims and objectives for that week were posted on the website Amelesia; visitors were told about this both verbally and in writing in the paper copy of the programme given to them;
  • one face-to-face training for all participants with Mina Drever: this took place in week 2 of the programme at Redbond Lodge Care Home;
  • after each visit participants were asked to write down their thoughts on the visit, following guidelines on the website, and post them onto the website by the Saturday 12.00 lunch time;
  • the last session of the programme, week 8, group verbal and written evaluation were conducted to review the programme.

Students visited on dates convenient to them and to their teachers within a time span between September 3rd 2018 and November 16th  2018. The community visitor arranged her visits directly with the managers at Redbond. Visits had to be completed by 4pm because residents are taken to the dining room by 4.30 for dinner at 5pm. Guidelines were given to the visitors for visiting residents: ‘you will be required to sign-in and sign-out. When meeting with your partnered resident be yourself, be relaxed. Smile!!! You are a friend in the eyes of the resident. He or she will be very pleased to have a visitor to spend some time together’. The following guidelines were given for written feedback on website:

  • Complete this by Saturday 12am at the end of each week after each visit
  • Do not over-think it. Write from your heart. Write as if you were telling someone, a friend, verbally how it went for you. Be succinct. Length is irrelevant. Your thoughts matter
  • Mina will respond to your feedback if appropriate.
  • Each Monday morning you will be able to access your response from Mina, if appropriate, and guidelines for that week’s visit.

Face-to-face training week 2 (Appendix 1)

The aims of this session were for participants to become familiar with the ideas underpinning this pilot programme, including the types of questions which may lead to sustained and meaningful dialogue between a visitor and a person living with dementia and consider different ways of looking at dementia. These aims were supported with examples from the memoir Thank you lady.

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