Dementia is the leading cause of death in the UK and the number of people living with dementia is predicted to increase by 80%, to 1.4 million, by 2040. Dementia is a progressive condition that can cause memory loss, confusion, and changes in language ability and behaviour.
In this blog, we hear about two new PhD projects in the Cicely Saunders Institute, one examining differences in where people with dementia and cancer die in rural, coastal and urban areas, and the other taking a health economics approach to understand more about how decisions are shared and made in relation to dementia care.
People living with dementia are often unable to access the appropriate and timely palliative and end of life care that they need. For people living in rural areas, accessing this kind of care can be even more difficult, with patchy service coverage and long distances to travel resulting in a ‘postcode lottery’. This unequal access to services can have an effect on where people die.
My PhD research is exploring differences in where people with dementia and people with cancer die (i.e. home, hospital) by whether they live in a rural, coastal or urban areas of England.
I hope this will help to improve end of life care for people with dementia in rural and coastal areas, as well as identifying where services can be best placed to support those at the end of life.
I started my PhD by examining what we already know about where people with dementia or cancer die in difference geographical areas. I found that there has been very little research to understand where people in coastal and rural areas die. This is despite the Chief Medical Officer’s report that the prevalence of chronic conditions, such as dementia, cancer and heart disease, is much higher in coastal areas.
This reinforces the importance of the next step of my PhD, which is to look at death certificates in England to identify where people in rural, coastal and urban areas die and how this differs.
When writing my PhD proposal, I was fortunate to be supported by a group of carers and people with dementia in South Devon. This group shaped my ideas around the impact of where someone lives on where they may die, and how this is different depending on the illnesses people live with. I was then able to gain some more funding from King’s College London to enable myself and other PhD students in the department to undertake some patient and public involvement (PPI) work to support our PhDs.
Using this funding, we will run three PPI workshops, facilitating collaboration with patients and public over time. We have had one workshop, so far. This workshop was very helpful in enabling me to think through aspects of my project that I need to keep in the forefront of my mind, such as the influence of socioeconomic position.
People living with dementia face a range of complex life decisions. What kind of treatment do they need? How should they manage their finances? Where is the best place for them to live and do they need extra support at home? Dementia deteriorates your cognitive function, making decisions like this particularly challenging. As a result, people living with dementia often rely on their formal carers, such as health care professionals, as well as their informal carers, including family and friends, to help them make decisions.
My research focuses on decision-making between people with dementia, and their formal and informal carers. I am interested in how this ‘triad’ of parties together navigates the complex decisions that come with a dementia diagnosis. People living with dementia have complex needs, which leads to complex decisions that can impact all people involved in decision-making.
My background in health economics led me to pursue a PhD at the Cicely Saunders Institute. Economics can offer a valuable perspective in understanding decision-making. Health economics seeks to improve understanding of how individuals and households allocate scarce resources, such as time and money, when faced with serious illness.
In contexts like dementia, economics can provide insight into the mechanisms that drive decision-making, such as uncertainty and varying preferences, values and levels of information amongst the ‘triad’. With these insights, we can begin to explore what decisions are made, why they are made and under what circumstances.
I hope my research will inform care by better supporting clinicians in shared decision-making, through information exchange, communication with all key parties and eliciting goals of care.
My research is informed by the PPI workshops India was instrumental in developing and securing funding for. With our first workshop, I had the opportunity to involve people with lived experience at an early stage of my research. It was affirming to hear that people who I hope my research will benefit are excited about the work I am doing. While economics research has typically lacked engagement with people with lived experience, I consider it a privilege to have my research shaped by PPI. By combining my expertise in economics and engaging with people with lived experience, I aim to offer practical insights that can improve decision-making and help ensure that the voices of people living with dementia and their carers are heard and valued.
India Tunnard and Ana Maksimovic are PhD Fellows at the Cicely Saunders Institute, King’s College London. They are part of BuildPall, a wider programme of work focused on building capacity and developing the next leaders in palliative care. BuildPall, along with India and Ana, are supported by Cicely Saunders International, with India’s research also supported by Dementia Research UK, and Ana’s by the EMPOWER Dementia Network+ .