Box 2.
Changes made in response to consultations
| Examples of changes made: structure |
| In the first iteration, an overview of the programme and sessions in the form of a game board was included. Although participants said it was important to provide this information so that people would know what to expect throughout the intervention, they felt the design was “too busy” thus this was redesigned in the second draft. “The diagram is very nice and clear, but might be too much for people with dementia.” (Carer, memory café consultation) “Daunting, dementia adviser would be okay with it, better to break it down into sessions eg, page for start, page for session 2 etc.” (Dementia adviser, consultation group) A modular approach was considered with separate booklets for each topic, but ultimately rejected. “Easy and less daunting if it were split into booklets based on needs.” (Dementia adviser, consultation group) The initial version of the social connections mapping exercise had many different blank sections for the person to add detail. Some participants felt it could be disheartening for people “to realise how few people they have in their lives” if they were not able to fill in all of the “social map”; therefore the design was made simpler, with fewer boxes to fill in. “Support network: It is much too much. I was crying when I read this page. New friend? No, how to get new friends when you are old and living with dementia.” (Person with dementia, interview consultation) “If someone had hardly anyone in their support network, the section on this might be upsetting – to realise how few people they have in their lives.” (Carer, interview consultation) |
| Examples of changes made: content |
| A number of participants said the manual was too long and that this may be overwhelming for those using it in the sessions. “Not very user friendly as it has too much information. This will put them off straight away.” (Carer, memory café consultation) “Even if the manual is smaller (in length) it won’t get people to pick it up. They’ll put it down and won’t remember where it is.” (Dementia adviser, consultation group) Vignettes were initially labelled as “case stories”. However, this was not well received. “Case story sounds childish – case study is a term most people are familiar with.” (Person with dementia, email consultation) “Sounds like ‘case history’ – medical/professional sounding. ‘Personal story’ or ‘your story’. ‘Jill’s story’” (Dementia adviser, consultation group) The title of each vignette was changed as suggested so that it included the name of the character featuring in the scenario. For example, “Inge’s Story”. Some participants were concerned that the planning aspect of the intervention would not be suitable as it required cognitive skills, which tend to decline with dementia. “A lot of strategies for improvement are based around giving a person ‘homework’- to sit down and write things down, listing things and even searching online all the tasks requiring a lot of initiative, planning and organizational skills which are often affected most. (Dementia adviser, email consultation)” Furthermore, they pointed out that activities may not be suitable for people depending on their educational and work life background. “Planning and organizational skills and writing things down might be quite developed for the people of certain educational background but not for the people who worked in more manual jobs or have been retired for a long time and main hobbies were more practical – gardening, cooking, housework, sports etc.” (Dementia adviser, email consultation) |
| Examples of changes made: miscellaneous |
| Several participants felt that stipulating a supporter is required for the intervention would exclude those who might stand to benefit but who could not identify someone to participate alongside them. “It’s a shame you’re excluding people who don’t have a carer or friend who can attend with them. I’d be excluded as I don’t have a carer and all my friends are at work.” (Person with dementia, email consultation) |