Periodic Reporting for period 1 - In-Touch (In-Touch: Implementation of a person-centered palliative care iNtervention To imprOve comfort, QUality of Life and social engagement of people with advanced dementia in Care Homes)
Reporting period: 2024-01-01 to 2025-06-30
As the population of Europe ages, dementia stands out as an extensive and significant healthcare challenge. 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 develop substantial care needs, 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. People with advanced dementia can be immobile, non-verbal and limited in their ability to take part in daily activities. Some people may be unsettled or agitated, with low quality of life and elevated levels of discomfort. In this situation, family members can find it difficult to connect meaningfully with their relatives and are anxious about the future. Often care staff operating within limited time and training resources, can struggle to provide care other than for basic needs such as feeding, toileting and skin care. Broadly, end-of-life care in nursing homes can fall short of optimal standards, and improvements are urgently needed.
Recognising the need for improved care for this vulnerable population, a palliative care approach is emerging as a framework to improve the quality of life for people with advanced dementia and their families. Despite policy recommendations and empirical evidence supporting the application of palliative care to people with advanced dementia, many European countries still lack sufficient resources to do so. A number of small-scale or individual interventions have shown promise in addressing different aspects of palliative care for people with advanced dementia in nursing homes, but evidence of their effectiveness remains limited, and a multi-component intervention is needed to comprehensively address all areas of care.
In response to these challenges, the In-Touch project proposes an ethically sound intervention 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 multi-component intervention aims to improve the comfort, quality of life and social engagement of people with advanced dementia in nursing homes.
At the core of the In-Touch project is a comprehensive cluster Randomised Controlled Trial (cRCT) involving residents with advanced dementia in 56 care homes in seven countries across Europe. The overall project aim is to determine the effectiveness, and economic benefit, of the intervention in improving a range of outcomes.
The In-Touch project addresses the critical need for non-pharmacological palliative care interventions for people living with advanced dementia in nursing homes and has the potential to revolutionise dementia care and palliative care in nursing home settings.
Recognising the need for improved care for this vulnerable population, a palliative care approach is emerging as a framework to improve the quality of life for people with advanced dementia and their families. Despite policy recommendations and empirical evidence supporting the application of palliative care to people with advanced dementia, many European countries still lack sufficient resources to do so. A number of small-scale or individual interventions have shown promise in addressing different aspects of palliative care for people with advanced dementia in nursing homes, but evidence of their effectiveness remains limited, and a multi-component intervention is needed to comprehensively address all areas of care.
In response to these challenges, the In-Touch project proposes an ethically sound intervention 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 multi-component intervention aims to improve the comfort, quality of life and social engagement of people with advanced dementia in nursing homes.
At the core of the In-Touch project is a comprehensive cluster Randomised Controlled Trial (cRCT) involving residents with advanced dementia in 56 care homes in seven countries across Europe. The overall project aim is to determine the effectiveness, and economic benefit, of the intervention in improving a range of outcomes.
The In-Touch project addresses the critical need for non-pharmacological palliative care interventions for people living with advanced dementia in nursing homes and has the potential to revolutionise dementia care and palliative care in nursing home settings.
The In-Touch project was launched in January 2024, with a kick-off meeting in February 2024, plus the establishment of the Early Career Researcher Committee. The website https://palliativeprojects.eu/in-touch/(opens in new window) was lauched and the development of the Dementia Care Helix has been completed. A Helix is an international open Innovation community or collaboration group hosted on the Crowdhelix platform focused on a particular research and innovation topic. Crowdhelix is a global collaboration platform for researchers and innovators. The Care Partner Advisory Group (CPAG) was developed which consists of 2-4 key stakeholders with lived experiences and expertise in advanced dementia, and support the PPI implementation of In-Touch. The Project Advisory Board was established, consisting of experts in the field along with people with lived experience of dementia. In-Touch has developed an extensive, layered training programme which incorporates an accredited programme, as well as a detailed intervention guide. The Project General Assembly was hosted in The Netherlands in April with representation from each partner, the Early Career Researcher Committee and the Care Partner Advisory Group. The In-Touch project has also finalised the scientific protocol and registered the trial on ISRCTN.
The In-Touch project could herald a major change in the way that we care for people with advanced dementia. Following the intervention, people with advanced dementia should have a 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.
In-Touch surpasses existing interventions by comprehensively addressing the complex psychological, social, and ethical challenges associated with advanced dementia. Through a cRCT, In-Touch aims to achieve several key outcomes: reducing social isolation and neglect by engaging individuals with advanced dementia and their families in tailored, group-based, multi-sensory activities; improving quality of life by addressing unmet palliative care needs; facilitating shared decision-making between families and staff on care planning; and enhancing staff capabilities through an accredited education program. Moreover, In-Touch draws on lessons learned from the COVID-19 pandemic, emphasizing the importance of fostering connectedness in care settings through in-person care and communication, rather than relying on technology that may become outdated or expensive to maintain.
In-Touch surpasses existing interventions by comprehensively addressing the complex psychological, social, and ethical challenges associated with advanced dementia. Through a cRCT, In-Touch aims to achieve several key outcomes: reducing social isolation and neglect by engaging individuals with advanced dementia and their families in tailored, group-based, multi-sensory activities; improving quality of life by addressing unmet palliative care needs; facilitating shared decision-making between families and staff on care planning; and enhancing staff capabilities through an accredited education program. Moreover, In-Touch draws on lessons learned from the COVID-19 pandemic, emphasizing the importance of fostering connectedness in care settings through in-person care and communication, rather than relying on technology that may become outdated or expensive to maintain.