Living with dementia can have a big emotional, social, psychological and practical impact on both the person with dementia, and their carers and relatives. The way dementia affects an individual will vary over time, and being part of someone’s journey through dementia involves tracking their progression. But why do we focus so much on how the person with dementia is changing over time? Should we not just try and understand how they are doing right now? The answer to that question should be a resounding “no”, and below I will highlight some of the reasons why it is so important for us to understand how someone with dementia and their symptoms change over time.
As many of us are aware, dementia is a progressive degenerative condition, in which a person’s abilities decline over time. Dementia is really just an umbrella term to describe a number of different conditions that have similar effects on the individuals, but likely diverse underlying causes. No two individuals diagnosed with dementia will follow the exact same trajectory. Thus, every person with dementia will have a unique disease progression, which makes providing treatment very difficult. Tracking the progress of the individual allows us to provide personalised treatment options.
Cognition, daily function and behaviour will likely be affected in dementia, and as the disease progresses symptoms will change, meaning that treatments need to be adapted. In order to match treatment strategies to the current needs, caretakers will have to understand how and perhaps why the symptoms have changed.
As the disease progresses, dementia can become extremely debilitating. The person with dementia may no longer be able to communicate how they are feeling or what is making them feel bad. Therefore, it becomes very important to monitor for treatable conditions that can cause distress, such as urinary tract infections, chronic pain and constipation. It becomes the carer’s responsibility to spot when something is going wrong.
At the same time, a person with dementia may be subjected to many different treatments, and they may not be able to let you know which treatments are working for them. For example, the doctor may want to know whether a new medication is having the desired effect. In those cases, the carer’s knowledge becomes invaluable in trying to determine whether a treatment has been successful. However, there are often lots of things going on, and the carer may struggle to entangle cause and effect. Tracking symptoms and disease progression over time can thus prove to be a valuable method for understanding how treatments are affecting the person with dementia.
Understanding the unique journey of the person with dementia by tracking their disease progression helps us provide the best care and quality of life. Of course the ultimate goal is always to develop a treatment that will cure those suffering from such horrible conditions. Ultimately, the only way to develop such a cure is to truly understand the disease mechanisms. We believe that tracking disease progression, i.e. how the person with dementia changes over time, is the first step to achieve the kind of understanding required to develop truly effective treatment strategies.
At CogniHealth we aim to transform the experience of living with dementia. We have developed CogniCare, a platform that supports carers through their journey and helps them track disease progression. Through our work we hope to help carers with the many responsibilities and challenges they face, and ultimately improve the quality of life of both the person with dementia and their carers.