In-Touch

Challenge. Caring for the increasing numbers of people across Europe with advanced dementia and palliative care needs who live in care homes is difficult and demanding. People with advanced dementia can be immobile, non-verbal and unable to take part in day-to-day activities. They can be unsettled or agitated, with low quality-of-life and elevated levels of discomfort. Family members can find it difficult to connect meaningfully with their relative and are anxious about the future. Care staff can struggle to provide care other than for basic needs such as feeding, toileting and skin care. Solution. An ethically sound solution which advances beyond the science, providing both care ‘in-the moment’ (using Namaste Care) and planning for future care needs (using the Family Carer Decision Support ‘Comfort Care’ approach). We call this the In-Touch intervention. Plan. To deliver a cross-country cluster randomised controlled trial of the In-Touch intervention in 56 nursing care homes across 7 countries to determine its effect on comfort, social engagement and quality of life. This is supported by 9 work packages ensuring that: the intervention is robustly planned and contextualised for different country settings; there is understanding of how it is delivered, and what people experience and ethically value about the intervention; the cost-effectiveness is understood; we have effective plans to transfer knowledge about this intervention if it is successful. Impact. This intervention could herald a major change in the way that care for people with advanced dementia, in the palliative phase of their illness, is provided across Europe. People with advanced dementia should have better quality of life as they approach death, improved engagement and reduced social isolation. Care staff will have an ethically sound and evidence-based intervention that is cost-effective to implement, with family members more involved in, and knowledgeable about, comfort care and future care plans.