The diagnosis of dementia
When people first get a diagnosis of dementia, they will have sought advice and help because the progression of the condition is causing them some difficulty and concern. However by the time this happens, the condition will have progressed enough that not only does the person with dementia recognise that “something is different”, but in all likelihood, their family will have also noticed something is not quite right. There is extensive research being undertaken currently, including bio marking to find out if there are early indications of dementia that might be perceived in a brain scan or blood sample, before it is noticed by the person. If bio markers can be found, then early intervention can be trialled. However as dementia is changes in the brain that get worse over time, it means that the changes in the brain will have been happening for a while before anyone realised it.
Dementia is diagnosed after lots of other possible causes are eliminated, including infection and depression. Often a brain scan is ordered to look at the damage in the brain, where it is and how it might have progressed from an earlier brain, which is professional judgement if there is no earlier brain scan. Depending on the presentation of the person, a diagnosis of a particular type of dementia is made, as this informs what if any treatment might be available and how the condition might progress, as this can assist in planning for future care.
The person and their family are often initially relieved, as there is now a known reasons for things being “different”, however the shock of the diagnosis and the reality of what it means takes a while to sink in. They can often be handed lots of leaflets with information and the whole situation can be overwhelming. Dementia, amongst other things is a terminal diagnosis and there is a slightly amended version of the stages of grieving, as first stated by Elizabeth Kübler-Ross and David Kessler, namely denial, anger, bargaining, depression and acceptance. These stages don’t all happen and don’t always happen in order. There is also a sixth stage, as proposed by David Kessler of finding meaning, which is when often people with dementia are happy to participate in clinical trials to assist others. But with the first stage of denial, all the information is put to one side until they need to consider it again. In reality this means that people come back from their appointment and put things away in a drawer and get on with their lives. Until they can’t. Then the information comes back out of the drawer and they have to deal with the situation, as they can no longer ignore it. This process of ignoring things can last a few weeks or up to a year is not uncommon.
Once the circumstances can no longer be ignored, people start dealing with the situation, which can be a tacit acceptance or what feels like a battle to fight against what is happening and to maintain faculties for as long as possible. If Powers of Attorney and Wills have not been completed already, this is the time when they are done and hopefully it is not too late that the moment the person has sufficient capacity has to sort them out has not passed.
Although the time spent waiting for things to get worse appears to be lost time, after the diagnosis, it is part of the psychological processing of the situation, which has life limiting implications for the person with dementia and life changing for the carer, who will at some point become tired by the role of caring, which can be both deeply personal and a privilege and very tough at the different times.
If you know someone with a dementia or know a carer, have compassion for them. And if you suspect you or someone you know has a dementia, encourage them to get a diagnosis, it answers their questions and can be the gateway to getting support for their issues.