The HOMEDEM(Co-designing a home with dementia) Doctoral Training Network carries out research at several levels: a) the micro level, how dementia affects relationships between PwD and their care constellations; b) the meso level, understanding the changing needs of the home living environment; and c) at the macro level, understanding how care constellations navigate the complex care ecosystem of community-based support and services. HOMEDEM is a network of 8 PhD researchers across europe researching different aspects of dementia care in Europe.

The rapidly growing number of people with dementia has created an urgent need for developing socially sustainable care. Sustainability entails the availability of sufficient health and social care services, safety, opportunities for social participation and agency regarding one’s personal life and care services (Littig & Giessler 2005). These principles must apply to persons living with dementia and, at the same time, to the vast number of their informal carers, who play a significant role in providing care.

Background: Cognitive communication difficulties are a characteristic feature of dementia. These deficits have negative effects on all aspects of daily life. Yet, there are few options for standardized assessment of cognitive communication skills in people with dementia.

Aims: To review published cognitive-communication assessments to determine what psychometrically sound assessments exist that are applicable to all people with dementia.

Brief description: Conversation abilities of people with dementia are impacted by cognitive communication deficits. Communication interventions can improve quality of life by increasing positive interactions and well-being. This study evaluates the feasibility of a conversation coaching intervention (CCI) for people with dementia and their communication partners.

Individuals with dementia have communication limitations resulting from cognitive impairments that define the syndrome. Whereas there are numerous cognitive assessments for individuals with dementia, there are far fewer communication assessments. The Profiling Communication Ability in Dementia (P-CAD) was developed to address this gap. The purpose of the study was to answer the following research questions: 1) What is the validity and reliability of the P-CAD? 2) Is it sensitive to change over time in the cognitive communication ability of the person with dementia?

Story telling is a way to define, make meaning and construct the self and we are three story tellers who believe that this is as important for people with dementia as it is for any of us.  Despite this we know that social isolation is both a risk factor and a symptom of worsening dementia.  We wanted to explore if people with dementia would enjoy a story telling group and to record those stories in a beautiful way that they could keep for the uncertainties in the future.  We asked people to bring an object that has been in their poss

This project aims to co-design and co-create a holistic digital health and well-being platform with and for people with dementia to provide enhanced dementia self-management support. The platform will integrate a visual personalised care plan for people living with dementia, provide timely access to services and supports when required, tailored to the specific needs of a person living with dementia and their carers, to support them to live independently in their own homes. 

Persons with dementia should be at the centre of decision-making about their care including basic activities (e.g. feeding and dressing), advanced activities (e.g. finances and using transportation), and meaningful activities (e.g. social and recreational pastimes). However, there is limited involvement of people with dementia in design of technology to support their care.

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.