In February 2016, MacIntyre was awarded a significant grant from the Department of Health’s Innovation, Excellence and Strategic Development Fund for the MacIntyre Dementia Project. The project, now in its second year, aims to help raise awareness of dementia among people with a learning disability, their families and professionals; to help people with a learning disability to receive a timely diagnosis of dementia; and to train professionals to provide better care for people with a learning disability living with or at risk of dementia.
As part of this, a consultation group was set up in Chesterfield to involve the people supported by MacIntyre and to ensure that their voices are heard. Formed in May 2016, the group called themselves “Keep Going…….Don’t Stop” and have been invaluable in providing insight and ideas about how the resources can be developed to communicate the messages in a way that makes sense to as many people as possible. Group members receive Love2Shop vouchers in recognition of their hard work.
The group meet once a month and work on a number of subjects relating to dementia, growing older and wellbeing. This is carried out through the use of role-play, conversations with ideas contributed by the group members, videos, picture cards and other resources.
In February, the topic for the group to discuss was going to the doctors. In particular, the group needed to think about what is important to them when they go to the doctors, how they want to be spoken to and what language should be used. Some of the group said:
“It is important to speak to someone that’s nice”
“It is important that the doctor listens to you”
“The doctor should sign or use pictures, but they don’t”
– Andrew B
The group used a series of picture cards to think about what steps should be taken, and in what order, when feeling poorly. To further this, they then watched a video put together by MacIntyre’s group ‘Haddon Beats’ about good doctors and bad doctors.
The meeting was finished by the group taking part in some Tai Chi, demonstrated by Andrew, and reflection on what was learned in the meeting, what the group enjoyed and what they didn’t enjoy. The insights and ideas shared will be used to put together an Easy Read booklet on the topic of going to the doctors.
For more information about the Keep Going…….Don’t Stop group or the Dementia Project, please email firstname.lastname@example.org. Follow @DementiaLD on Twitter for more updates.