Dementia Care

Background

Noncommunicable diseases (NCDs) are a major health problem that are often overlooked despite their significant impact on population health. Among these, dementia stands out as a widespread and main challenge, particularly in ageing populations. In the EU-27 alone, the number of people with dementia is expected to almost double by 2050, highlighting the urgent need for effective care strategies. Unfortunately, as dementia progresses, people often require extensive care, with nursing homes becoming the most common place of residence and eventual death. However sometimes the complex physical, emotional and social needs of people with dementia are not fully met, raising ethical and socio-cultural concerns. 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 relatives 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.

Recognising the need for improved care, a palliative care approach is emerging as a framework for improving the quality of life of people with dementia and their families. Despite policy recommendations and empirical evidence supporting the integration of palliative care, many European countries still lack sufficient resources to do so. Multi-component interventions have shown promise in addressing different aspects of palliative care, but evidence of their effectiveness remains limited, and no single intervention comprehensively addresses all areas of person-centred palliative care.

Key Project

The In-Touch project, launched in January 2024, aims to address the critical need for non-pharmacological palliative care interventions for people with advanced dementia. In-Touch intervention proposes 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). This innovative programme aims to improve the comfort, quality of life and social engagement of people with advanced dementia in nursing homes across Europe. Through a comprehensive cluster randomised controlled trial involving 56 care homes in 7 countries, In-Touch aims to determine the effectiveness of the intervention in improving a range of outcomes. Supported by nine work packages, the initiative ensures robust planning, contextualisation and evaluation, with the potential to revolutionise dementia care and palliative care in care homes.

University College of Cork is leading a diverse consortium behind In-Touch. Comprising 13 organisations, across the EU, UK and Canada, each bringing different expertise, innovation and experience, the project is committed to investigating a comprehensive, non-pharmacological intervention for dementia.

Dementia Care Helix

The Dementia Care Helix is an international open innovation community of experts and practitioners hailing from academia, education and training in the dementia, palliative care, and associated domains. Launched with a specific focus on driving impact, leveraging resources, and facilitating knowledge spread and dissemination, the Helix plays a pivotal role in supporting the broader aim of addressing the pressing demand for non-pharmacological palliative care interventions and solutions for people in advanced stages of dementia.