Caring for someone with a dementia
There are lots of different kinds of dementia and they have slightly different presentations, but the key points about all dementias is that they are changes to the brain, that affect memory and brain function, that is deteriorating. There can be changes in personality and the deterioration might not seem to make sense, as someone can still retain one key skill long after they have lost other key skills, it doesn’t always work that the person with dementia loses everything at a nice even pace! And importantly, eventually it will be terminal.
It is useful to get a diagnosis of the kind of dementia that the person has, as it will help the carer to understand some of the changes that will happen. Diagnosis is also a gateway to access some services, that will support both the person with dementia and/or their carer. And making sure that the carer is supported is really important, as without the carer their life would be much more impaired and disempowered. The carer will facilitate the best outcome that can be achieved. In the UK dementia costs £26bn a year, the biggest part of that figure is made up of the work of unpaid carers, £11bn, and the NHS and social services make use of that unpaid care, which means supporting the carer to ensure that carers can keep going.
There is no cure for dementia, there is a lot of worldwide work being done currently looking at different cures, creating new drugs and repurposing existing ones and although there have been some promising initial results, I have been told that a cure is a least 10 years away, if not more.
Because there is no cure, the only therapies are those that keep the person in the state that they are in, but do not roll back the clock on the progression of the illness. These drugs only work for a certain period of time, as they will not stop the underlying progression of the illness, but will maximise the cognitive abilities that they have.
The other therapies that are useful are the social interactions, as long as they are meaningful and there is a lot of work being done on these. Music seems to be quite powerful to many people. Football dementia cafés are great for football fans and here in Plymouth we are lucky enough to have a dementia café for veterans. Elsewhere there are dementia farms, which for former farm workers is incredibly powerful that they are once again able to participate in the workings of a real farm. When the idea was first mentioned there was concern about the risk, but the risk is managed and the participants get a lot of value from it.
Carers need support and respite, they need to be able to have a life of some kind away from their caring role, for an hour, a day or a week. Family carers do an amazing job to care for people with dementia and yet they are working alongside a progressing condition that is slowly taking their loved one away. 85% of carers are clinically depressed within a year of diagnosis, it is hard dealing with the condition and its progression.
A person with dementia can live a fulfilling life, they can be empowered to do the things that they want to for as long as they are able to. It takes the carer and the understanding of a whole community to do it well.
If you need help caring for a loved one with dementia, let me know, I understand what it is like.