General thoughts about the projects I am visiting…
Criteria – how do people sign up for these projects – are they self referrals? How do people find out about the programs? One of the issues in Cambridge is getting people to join in, sign up, have a go. There is a lot of reticence around dementia diagnoses – and often family members struggle to acknowledge the situation. I wrote to Laurel at MoMA to ask how people joined the Meet Me at MoMA programme.
To answer your question, we advertise the program as for individuals with early- or mid-stage Alzheimer’s disease, so I think that people mostly self-select based on that. There are certainly some individuals who are in the later stages of the disease, the majority of whom started coming to the program years earlier and have progressed in the time since. When new participants call to register we don’t usually ask to verify their stage (I’ve found there to be a lot of variation in how people classify their loved ones) but rather ask if there is anything they would like us to know about their loved one. And then we go from there. The reasons for this are largely practical- even if we could get more info we wouldn’t necessarily be able to pass it onto the educator for that person on that day- but it also allows us to enter the experience with an open mind/clean slate, so to speak.
There have been a few instances where care partners are unsure if the program will be a good fit, in which case we invite them to attend alone to see what it’s like (there was one such woman with us yesterday).
At this point we have maybe 6-8 participants in the later-stage of AD, most of whom are nonverbal. A couple of years ago we decided to dedicate one of the 6 groups to this sliver of the audience, as we felt that they were getting lost in the group conversations. With the late-stage groups educators often incorporate more hands-on experiences and generally just slow things down. It looks a bit different but hopefully allows for more meaningful participation for those who are less successful in the big group conversations.