Dementia is a progressive condition that affects a person’s cognitive abilities, including their memory, language, and problem-solving skills, which impacts their everyday daily activities. Currently, more than 55 million people have dementia worldwide, with over 60% living in low-and-middle-income countries. Every year, there, are nearly 10 million new cases (WHO 2023). In the UK, over 850,000 people are living with dementia and this number continues to rise. It will exceed 1 million before 2025. Despite the high prevalence of dementia, there is still a lack of understanding and awareness about the condition among the general public and within the health services.
One of the main challenges in providing effective care for people with dementia is the variability in their symptoms and needs. Dementia can affect people in different ways, and it can be challenging to provide person-centred care that meet the needs of each person. This is where Patient and Public Involvement (PPI) research can play a critical role, informing the development of services that are tailored to the needs of people with dementia.
PPI research involves engaging patients and members of the public in the research process, from the design and planning of research projects to the interpretation and dissemination of findings. PPI can help to ensure that research is relevant and meaningful for patients and the public and can help identify research questions and outcomes that are important to them.
In the context of dementia, PPI research can help to ensure that healthcare services are person-centred and responsive to the needs of people with dementia and their families. PPI research can help to identify the priorities and preferences of people with dementia and can inform the development of interventions and services that are tailored to their needs and the needs of their families.
There have been some examples of PPI research in dementia care in the UK. For example, the Alzheimer’s Society has funded several PPI research projects aimed at understanding the experiences of people with dementia and their families, informing the development of services that meet their needs. The National Institute for Health Research (NIHR) has also funded several PPI research projects in dementia care, including studies that have involved people with dementia as co-researchers.
However, despite these examples, there is still a need for increased PPI research in dementia care in the UK. More research is needed to understand the experiences and needs of people with dementia and their families, particularly those from under-represented communities. PPI research can also help to ensure that healthcare services are responsive to the changing needs of people with dementia as the condition progresses.
We at Essex have several researchers working towards research in dementia and this includes ensuring that those living with dementia are involved. Within the Institute of Public Health and Wellbeing there are two post docs working with the dementia theme in the NIHR ARC East of England, Clare Hammerton and Dr Smruti Bulsari. In the School of Health and Social Care, Professor Camille Cronin, Dr Rachel Marrow and Victor Ashby are leading a project in partnership with ESNEFT looking at the fundamentals of dementia care. There is a fantastic PhD opportunity to be involved in this this work.
In addition to PPI research, there is also a need for increased awareness and understanding of dementia in the UK. Many people still associate dementia with just memory loss and fail to recognise the full range of symptoms and the impact that it can have on a person’s life. This lack of understanding can lead to stigma and discrimination, which can further exacerbate the challenges faced by people with dementia and their families. To address this, there have been several awareness-raising campaigns in the UK, including Dementia Action Week and World Alzheimer’s Day. These campaigns aim to raise awareness of dementia and reduce stigma and discrimination.
In conclusion, dementia is a significant public health challenge in the UK. There is a need for increased awareness and understanding of the condition. PPI research has an essential role to play in achieving this by ensuring that the voices of people with dementia and their families are heard and that their needs and preferences are reflected in the development of healthcare services.
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