An initiative is being launched to help staff working with people diagnosed with neuroprogressive conditions to have ‘confident conversations’ to support those affected and their families as they decide whether to take part in research studies.

The Confident Conversations initiative brings together NHS Research Scotland’s Neuroprogressive and Dementia Network (NRS NDN) and Alzheimer Scotland to provide training and support tools for the charity's staff.

The aim is that 100 post diagnostics support link workers and 40 dementia advisers will take part in the initial phase of training, with the first day-long courses scheduled for next month.

Alzheimer Scotland staff are to be given a Confident Conversations workbook to accompany their training and support them when they’re talking to people, with access to a virtual tour of a clinical research facility and other online aids, links to further training videos and contact details for Join Dementia Research (JDR) and the NDN.

The plans include creating a dedicated Confident Conversations webpage.

Dr Tom Russ, Clinical Lead for NRS NDN says he has been really encouraged by the enthusiasm for the programme from Alzheimer Scotland:

“The training will cover a range of areas – from the different models of patient and public involvement, including why it is important to involve people in research, to sharing experiences of what strategies have been successful when introducing a new topic, and role play on how to talk to people about research.

“With a draft of the workbook in place at the Alzheimer Scotland conference, the rest of September was dedicated to consultation to ensure we’re getting our approach right.

“We are then running two sessions in November as a trial and modifying accordingly, followed by a webinar for all staff.”

Alzheimer Scotland’s Chief Executive, Henry Simmons, says it is vital that more people feel able to take part in research:

“This is a truly exciting, forward-thinking initiative and we are delighted to work in partnership with NDN.

“Confident Conversations has many possibilities and we’re only just starting to explore the full potential of it.

“Ultimately, we hope the outcome will be a higher number of people with or without a dementia diagnosis participating in dementia research as a result of a conversation with a highly skilled member of staff.

“There is also scope for wider adoption of this training for a broader roll out, which we hope will lead to even greater participation.”

Read more: Dementia strategy call for views launched; Scotland can lead on dementia research; Insight: Dementia’s hidden injustices.

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