Author: Prof Suzanne Timmons, co-PI for InTouch and co-investigator for AI4HOPE

At first glance, the In Touch project and the AI4HOPE projects seem very different. Both are Horizon Europe projects, funded within the same grant call (Novel approaches for palliative and end-of-life care for non-cancer patients), and focussed on people living with dementia. But one is a cluster randomised controlled trial, involving people with advanced dementia in residential care (InTouch), and the other is design/pilot test of interventions for people with milder dementia, living at home (AI4HOPE). The InTouch project has been described as “high touch, low tech” as the intervention involves daily multisensory stimulation, coupled with advance care planning and communication support for families, all delivered by trained residential facility staff. In contrast, AI4HOPE can be described as “all tech” as it co-develops and tests a digital health intervention, to be used by a person at home, focusing on self-management of symptoms, along with personal future care planning support in the form of tailored online information.

However, a closer look shows that both projects have many similarities and synergies. Both take a biopsychosocial approach, involving social activities, capitalizing on retained abilities and aiming to reduce distress. AI4HOPE takes evidence-based interventions, like music and reminiscence, and provides these in a home-based digital intervention provided on a tablet or through a VR headset. The person can use these for relaxation, alone or with a loved one, or can choose to play memory-based games or explore virtual environments. InTouch also uses evidence-based multisensory stimulation, such as aromatherapy, music, touch, and taste, provided in a small group. Both are highly person-centred, tailoring the intervention to the person’s preferences, although self-directed in AI4HOPE and guided by families in InTouch.

Both aim to give control to people, not healthcare staff – the patient in AI4HOPE and the family in InTouch. AI4HOPE provides highly accurate information on dementia, gathered from multiple guidelines and reputable websites, and checked by topic experts, in a single platform, where the person with dementia can tailor their exploration of content to their current issues or for future planning, including considering advanced dementia and dying with dementia. The person can use this information to prepare for discussions with healthcare providers and to take note of their concerns or wishes over weeks or months. By becoming prepared, at their own pace, they can take more control of discussions around their future.

With InTouch, the focus is on the family becoming prepared, as the resident is already living with advanced dementia. The family receives a bespoke information and communication support tool, the Comfort Care booklet, which gives honest, practical information about advanced dementia and end-of-life care. This includes prompts for questions they might want to ask the clinicians so that they can fully understand their relatives’ dementia and how it may affect them in the coming months. This allows families to talk together and to make decisions, always based on their in-depth knowledge of the person with dementia’s values and preferences, at their own pace rather than in an emergency situation.

Both projects have communication at their heart. AI4HOPE allows people to keep a diary, or to record audio or video messages for their families or even their future self, and to save or print out key information they would like to keep and review in the future. InTouch focuses on communication between families and healthcare staff, but also between staff and residents. In the InTouch daily group sessions, the staff member gets to reconnect with the resident, to spend time in each other’s company and to share a simple, non-demanding activity together, rather than the usual rushed and task-based care.

And finally, both projects use technology to assess symptoms. The InTouch intervention uses gold-standard observation and proxy report tools to measure the primary and secondary outcomes, but residents also wear the wrist-worn Empatica Embrace Plus smartband to detect heart rate variability, skin impedance and movements, as markers of stress versus comfort. The project will generate much-needed data on acceptability and validity in residents with advanced dementia. AI4HOPE uses the wrist-worn POLAR smartband, along with state-of-the-art facial and voice emotion analysis, powered by AI. Both projects recognize that sometimes a person with dementia can’t express how they are feeling, and other people may not be sure, so that technology that can use the person’s retained physiological response, along with facial and verbal indicators, may play a key role in future personalized and responsive care.

Together, InTouch and AI4HOPE target symptoms from early dementia right though to end-of-life care, with a focus on communication, preparedness, personalization, and comfort. Because sometimes you need to be both in-touch and hopeful.

More about InTouch: https://palliativeprojects.eu/in-touch/