This 4-year mixed methods study is focused on better understanding the problems faced by people (and their family carers) living at home with dementia and incontinence. The first phase of the study comprised 45 semi-structured interviews with people with dementia, family carers and nurses (continence and dementia) to ask about their views on dementia and incontinence related problems and potential solutions. This was followed by an online survey with family carers to gain further data on their views and the problems they face in their role supporting the person with dementia to manage continence problems. Currently, information resources to support family carers to cope with incontinence are under development in preparation for evaluation.

Little information exists concerning the implications of comorbid cancer-dementia for people having cancer treatment, particularly in an ambulatory care setting. However, it is known that people with dementia have poorer cancer outcomes than those without dementia. Research to understand the delivery and experience of cancer treatment in ambulatory care is needed before interventions can be developed to ensure high quality care is provided for this patient group. The purpose of this focused ethnographic study is to characterise the environment, behaviour and processes that comprise the ambulatory care setting, and to explore what constitutes ‘good care’ for people with dementia undergoing cancer treatment (radiotherapy, chemotherapy or other SACT) in this context. The study will focus on understanding: (1) the physical fabric of the care setting; (2) the interaction, behaviours and perceptions of those within the care setting; (3) the organizational, clinical and interactional processes involved in care delivery.

We want to help nurses look after their patients in hospital. We want to help them find out how each patient likes to do things like getting clean, going to the toilet, eating and drinking. Some people have to go into hospital to get better. Sometimes, when they are in hospital, the nurses don’t ask them enough about the way they like to do things. For example, if they like a bath or a shower. Or if they need help going to the toilet. Or if they would like to walk about. Or what food or drink they like. Not being asked about these things is not helpful. It might mean that people end up getting sicker and staying in hospital longer. Or they may go home needing more help from their family. People with dementia, learning disabilities or stroke may not be asked these questions about what they like. Sometimes the nurses don’t know how to do this well. Sometimes they know how to do it but can’t do it. The reasons they can’t do it are not well understood. We are a group of people who want to make this better. Some of us work at a university finding things out. Some of us are nurses. We want to include people with dementia, learning disabilities or stroke in our group. This will help us think about how to make things better. We think we can help nurses by using ideas that have worked in other places. When people like us have an idea about how something can be made better, we try the idea out and see if it works. An example of an idea we might try is a training day for nurses. A teacher in a classroom shows the nurses how to do something new. Then the nurses see if they can do the new thing when they go to work. We will write down the story of what happens. The story gets printed in a magazine or a book. Or the story might get shared in meetings with other people or on the internet. This is our plan to make an idea that will help nurses to help patients: Find and read the stories of ideas tried in other places that might be useful. Talk to patients, nurses and others to make an idea that we think will work. Talk to patients, nurses and others to see what they think about the idea. When we’ve done this work, we will be ready to try this idea out. If it works, when people go into hospital, they will be asked about what they like. And the nurses will be helpful. And the care will be a little more like being at home.

Moving into a care home is a significant and often life changing transition. Everyday objects can make this easier. Whilst it is widely believed that care homes encourage new residents to bring personal possessions with them, a recent study found this not to be the case. Only certain objects are encouraged in care homes and people with a dementia are often excluded from deciding which objects they take with them. Material citizenship is a conceptual framework that focuses on the interactions people have with objects, for example, access to a preferred coffee cup or being able to use a hairdryer or a pair of hair straighteners. Material citizenship emphasises the use of objects as way of enabling staff to support residents live a meaningful life. We are collaborating with Brendoncare to develop a training programme that will educate staff on the importance of objects in everyday life and how to include objects in care assessments and care planning. The training programme has been developed as an online training programme (due to COVID-19 restrictions on visitors to care homes). It will be delivered to care home staff in two separate two and a half hour sessions. The first session will introduce material citizenship, what it means and what it can do. The second session will focus on embedding material citizenship in care assessments and care planning. Following a four-week period after its implementation, care home staff will be interviewed to gain an understanding of how they found the educational programme, how confident they are working with a material citizenship approach, whether they think it improves the care they deliver and the conditions needed to work with a material citizenship approach. This research will help us understand what changes might be needed to get organisations ready to reimagine care home life. It will also mean we can identify which staff are more likely to adopt this way of working. This will likely benefit care organisations in recruiting staff who can work in a complex care environment whilst still providing person centred.