Can we predict how dementia will progress following a diagnosis?
The impact dementia research can have on improving people’s lives and wellbeing is an area I am passionate about. I am a General Practitioner, so supporting people with dementia is an important part of my role; I am also Professor of General Practice Research at Keele University and have been working with a team to develop a research programme focussed on dementia.
For several years, I have supported Alzheimer’s Research UK in the production of their health information. Giving clear and accurate information about dementia is so important for raising awareness about the diseases that cause the condition. Within my role as an expert reviewer, I make sure the evidence used to produce the information given in the booklets, is up-to date and reliable. Most recently I helped review a booklet about some of the most frequently asked questions people have about dementia. If you would like this information, you can access this here.
With the number of people living with dementia increasing, research is making fantastic progress in identifying what factors can increase someone’s chances of developing dementia. However, relatively little is known about the factors that will influence the course and progression of dementia following a diagnosis.
Why is this research important?
When someone receives a diagnosis of dementia, little is known about how their condition will progress and affect that individual over time. This is because dementia affects every person differently, with a number of factors influencing progression such as having other health conditions, our level of cognitive reserve and whether a person takes medications to treat other conditions.
As a result, trying to plan the most appropriate treatment path and explain potential care outcomes for that person and their family can be very difficult for a nurse or doctor. Being able to identify the potential factors that could influence the progression of someone’s dementia, could give healthcare professionals a clearer indication of what may happen and what should be planned for. This may then help to improve long-term health and wellbeing outcomes, for example a reduced chance of hospital admission or a reduced risk of experiencing depression and anxiety.
The majority of healthcare provided to people living with dementia is done so by general practitioners and practice nurses in a primary care setting (your local GP surgery). They often get to know that person well, and so are best placed to identify any changes in the symptoms or condition. By researching the primary care medical records, we may be able to look for common patterns in factors affecting the progression of dementia to improve care, health, and treatment outcomes.
How was this research conducted?
When we started this research, we collaborated with healthcare providers, people with dementia, their caregivers and researchers to identify what they thought may be possible markers for dementia progression that would be recorded in medical records We then looked at large databases of medical records containing over 30,000 people living with dementia. This allowed us to find out whether these markers were associated with long-term outcomes such as being admitted to hospital and dying earlier.
From this research we were able to identify markers of dementia progression that are recorded in primary care settings and group them into 13 ‘domains’.
What do these domains mean?
These categories are used to group potential markers for dementia progression. Having one or more of these markers does not directly correlate to how someone’s dementia course will change. However, having several of them may be used to build a picture of someone’s overall health, and potentially help shape the appropriate treatment for that person.
Each domain is used to describe the following:
- Daily functioning: developing difficulty in carrying out day to day activities such as driving, climbing the stairs, eating, and moving around.
- Care: how heavily does someone rely on care from others? Care can range from personal care to help making financial decisions for example.
- Diet/Nutrition: nutritional deficiencies or weight loss due to a poor diet.
- Change in dementia-related drug: new or changed dementia-related drug prescription.
- Neuropsychiatric and severe Neuropsychiatric: development of mental illness such as anxiety or depression, behavioural issues or changes to sleep patterns.
- Home pressures: difficulties in family and friend relationships or dealing with a bereavement.
- Symptoms: experiencing new symptoms such as hearing loss, dizziness, or swallowing difficulties.
- Comorbidity: the presence of other long-term conditions such as high blood pressure, diabetes, asthma or stroke.
- Increased multimorbidity: Increase in the number of drugs prescribed to treat other health conditions.
- Imaging: being sent for investigations such as x-rays, ultrasound, MRI or CAT scan.
- Cognitive function: changes in cognitive function including memory loss, confusion, and aphasia (difficulty with finding the right words).
- Safety: an incident such as a fall, fracture, or head injury.
What is the impact of this research?
The study has given us an invaluable insight into the possibilities of tracking the progression of dementia. We hope the results of this study will be of benefit to people with dementia, their caregivers, healthcare professionals and other researchers. This new information is the first step along the path to ultimately make it possible for healthcare professionals to predict the long-term health outcomes for people living with dementia, and identify those at risk sooner. Some of these factors are also possibly modifiable, meaning it may be possible to change them to reduce someone’s risk of poorer long-term outcomes, for example someone’s weight and nutrition could be closely monitored to make sure they are within healthy levels. In the future, we may be able to offer more targeted treatment and support for that individual, such as treating mental health issues such as depression or anxiety so that they do not become severe, or avoiding use of certain medications like antipsychotics. There may also be benefits for research. If these markers allow us to track the progression of dementia, this would help research studies test the effectiveness of new drugs and treatments without needing intensive and costly follow-up assessments or waiting for longer-term outcomes.
If you would like to find out more about this research, you can visit the study website (www.keele.ac.uk/meddip) or watch the animation produced by Keele university below.
About the author
Professor Carolyn Chew-Graham
Carolyn Chew-Graham is a GP Principal in Central Manchester, Professor of General Practice Research at Keele University, Honorary Professor of Primary Care Mental Health at Midlands Partnership Foundation Trust, Honorary Professor of Primary Care, University of Manchester, and Visiting Professor at the University of York.
Carolyn’s main areas of interest and expertise include the primary care management of people with mental health problems, multiple health conditions and unexplained symptoms; and the mental health and wellbeing of clinicians. She has qualitative research methods expertise, drawing on theories from social sciences and psychology, but always with a focus on clinical practice – trying to answer questions that are important to patients, their families, health care professionals and the NHS.