From our earliest days we all want to have control over our life decisions and our choices. When someone is trying to take away that control, we do everything in our power to stop that from happening. We may not understand what another person is trying to do, and we end up being controlled. Gradually that becomes our ‘normal’ although we may not feel happy, rather a sense of ‘something is missing’ prevails. A pattern has emerged – families and carers of someone living with dementia will often try and take control and make decisions because they think that the person with dementia is unable to function and they want to protect the person from harm or making a ‘bad’ decision.
Controlling care is embedded deep in our healthcare culture and is the outcome of having a ‘task’ orientated model of care, where the ‘task’ takes precedence over the person needing the care. This is not to say that health care workers do not care, there are caring and compassionate people out there, but it is a ‘mindset’ of ‘I know what you need and want’ that dominates.
‘Behaviours’ can be normalized and comments such as “he always shouts, it is normal for him due to his dementia” is commonplace. This minimizes the importance of what this person is trying to communicate. Due to his ‘brain damage’ he cannot verbalise in the same structured way as someone without ‘brain damage’ therefore it emerges in different ways, such as shouting, screaming, throwing items, and withdrawing in himself.
Controlling care manifests in different ways such as: actions and/or language such as “don’t’ do that” “that is not very nice” “drink your juice” “it is time for you to eat”. These can appear innocent or harmless, but they are powerful forms of control that erode self respect, and personal dignity.
When a person experiences a ‘loss of control’ it is usually magnified by others ‘taking over’ and ‘doing the right thing’. It is critical that we ‘step into the individual’s shoes’ and look at what this person has lost control over. It might be moving out of their home that they had for 30 years, they no longer get to cuddle next to their husband/wife/partner every night, no more walking to the shops daily or taking the dog for a walk, taking a long uninterrupted soak in the tub/bath – everything that we take for granted which is ‘our life’ has gone and/or changed forever. We need to help people get back the ‘control’ in whatever shape or form this may take.
How to change this ‘mindset’ and ‘culture’ is not an easy thing to do and at Meaningful Care Matters we stress the importance of getting to know the person we are caring for and to try and find the ‘core spirit’ of that person to help them re-emerge from a life of being ‘controlled’.
If we don’t know a person well it is much harder to connect and have meaningful interactions. Exploring the life history of that person is key to understanding what makes them happy, sad, and what ‘triggers’ they may have.
An example of this is a gentleman that I met in a ‘Butterfly’ Home who was a businessman and went to the office everyday prior to being diagnosed with dementia. The team members in this home observed his apathy and depression and decided to try and help this gentleman regain some structure and dignity back in his life. An office was set up in an area close to his room which consisted of a desk, chair, pens, paper, envelopes, a ‘copy’ stamp etc. and a coat stand for him to hang up his jacket and hang his briefcase. This became part of his life again which defined him and gave him back ‘control’.
We all have a ‘duty of care’ to help people living with dementia gain back control and self -esteem to re-find the person that they once were.