The resource, ‘Jenny’s Diary’, is a booklet and a set of postcards aimed at supporting conversations about dementia with people who have an intellectual disability. This free resource was funded by a dissemination grant from Alzheimer’s Society and developed in close partnership with Hansel, a leading social care provider based in the west of Scotland. An international advisory panel of people with a learning disability, families, academics and practitioners provided invaluable input.
Colin Capper, Head of Research Development and Evaluation at the Alzheimer’s Society, said, “Coming to terms with a diagnosis of dementia is a significant challenge for many people and their families. However, it can be even more difficult for people with learning disabilities who might need extra support to understand what is happening to them. Although people with learning disabilities, in particular Down’s syndrome, are at an increased risk of developing dementia, there is not enough research to understand the specific challenges that this group face. Everyone with dementia has a right to know about and understand their condition and we’re delighted that our funding has produced such useful resource.”
Lead academic on this project, Dr Karen Watchman of the University’s School of Health, Nursing and Midwifery developed this important resource in collaboration with Irene Tuffrey-Wijne of St Georges University of London & Kingston University and Sam Quinn also of University of the West of Scotland.
The resource utilised actors, who are customers and staff at Hansel, to tell the fictional story of ‘Jenny’, who has a learning disability and is diagnosed with dementia. Jenny’s Diary takes a three-step approach, initially opening up with dialogue about why Jenny may be experiencing changes, and how she can be supported to live as well as possible with dementia; secondly suggesting how to have a conversation with Jenny about her diagnosis of dementia; and lastly guidance on how to talk about dementia with Jenny’s partner, George.
Dr Watchman, Alzheimer Scotland Senior Lecturer in Dementia and Depute Director of the Alzheimer Scotland Centre for Policy and Practice at Hamilton Campus, said: “We are delighted to launch Jenny’s Diary and are extremely grateful for all the support we received to enable its development. Currently there is limited guidance on how to talk about dementia with an individual who has a learning disability, or to their friends of partner. Additionally, we have focused on supporting the individual who has a learning disability to maintain relationships that are important to them as dementia progresses.”