When I first began working as a care worker in the community I was aware of dementia and completed all of my training however this did not fully prepare me for how devastating dementia is for both the individual and the family and friends around them.
I learnt an incredible amount about the different types of dementia during my training and subsequent qualifications. Dementia is such a broad term when there are so many variations. There are five most talked about types of dementia; Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, frontotemporal dementia and mixed dementia but there are in fact over 200 sub types of dementia and people often have more than one type and this is referred to as mixed dementia.
Each person will experience dementia in a unique way as it affects the brain and the transmission of signals to the rest of the body. Our brains are unique therefore the experience is unique. Dementia will also progress at different rates for different people. It does not just affect the older population as early onset dementia is now recognised.
There are many different symptoms of this disease with the most common being memory problems, problems with processing information and issues with communication.
Out of all the people I have supported with dementia two really stick out in my mind. I supported a lady in an extra care setting, she had her own beautiful flat in a complex. She had an amazingly supportive family network who did everything they could for her. She had Alzheimer’s disease. When she first arrived and began receiving care, she was very independent; cooked, cleaned and took care of herself every day, the only thing she needed support with was her medication. She was happy all the time and had lovely stories to tell. Over the years she became more dependent on having care as her memory deteriorated but she was also aware of this and this took away her happiness. Her stories became more repetitive and she regressed back to when she a children’s nurse and believed where she was living was her workplace. Watching her family try to come to terms with what was happening to her was heart breaking, they felt as though they were losing her, and she was no longer the same person. One of her daughters spoke and said how she felt she was mourning her mum even though she was still alive.
I also supported a man in his own home living with his wife. He had vascular dementia. From the very beginning he was verbally aggressive towards the care workers, but we knew this wasn’t him, it was the disease talking. He would often hallucinate, talking to people that he could see in mirrors and window reflections. His wife did everything for him while his quickly deteriorated. He grew more and more aggressive and began to refuse to accept help leading his wife to the heart-breaking decision to put him into a dementia specialist care home. Her world completely changed; she was exhausted.
Seeing families suffer like this has made me see dementia in a different way. The individual sufferers cannot control what is happening to them and a lot of family members and loved ones fight against it which can make the individual more confused and agitated. How about we simply embrace what they are going through? If the individual is talking to someone who is not there, agree with them and let them speak. If the individual believes they are at work let them believe that and adapt your care around it. The more that we tell them “don’t be silly, there isn’t anyone there” the more they will feel upset and confused. In their world all of the things they are seeing and understanding to be real ARE real to them.
This disease, for which there is no cure, takes many victims in its path, not only the individual but everyone who loves, and cares form them. Those people need support too. Encouragement to be educated in dementia and its effects and how best to support the induvial is so important for everyone involved.
