A kind person said to me the other day how sorry they were to hear that my mum had dementia. It came as a bit of a shock because although I knew it was true, mum is still in the early stages; she is living independently and enjoying life.
By Penny Bell Up to that moment, I had been able to set the diagnosis to one side, remain resolutely positive and persuade myself that nothing was going to change.
But this gentle comment put things sharply into perspective. It made me face up to some of the subtle changes that, deep down, I have been aware of, particularly around conversations and communication with mum. If you are caring for someone in the early stages of dementia, you may have noticed some of these too.
Forgetting words
Dementia can affect the parts of the brain that deal with language. You may find words are forgotten or substitutes used, for example saying, ‘the thing you write with’, instead of ‘pen’. We all have moments when the right word escapes us, but with dementia, this may include simple words too. Mum’s sentences can sometimes stop mid flow because she cannot remember the word she needs. She finds it frustrating and my instinct has been to quickly provide her with an alternative and try not to let her worry about it.
Talking about the past
It is often easier for someone with dementia to recall events from years gone by, rather than try to remember what happened only hours earlier. Long term memories are often the strongest and talking about the past can mean the person feels able to speak confidently and enjoy a conversation. Mum can become very flustered if I ask her what she has done today and so I have learnt not to put her under pressure to remember. Instead, we chat about what she is doing right at that moment. She likes to talk about her parents too, and memories of growing up in Scotland. We recently found a photo of her dad as a baby and this led to lovely, happy recollections of her own childhood.
Understanding new info
For some people with dementia, absorbing and understanding fresh information becomes more difficult if the area of the brain where new things are processed is damaged. You may need to simplify how you say things and repeat them several times. I find this change particularly hard as stories about grandchildren’s successes, which would have normally resulted in much celebration, can seem to fall a bit flat and then be forgotten. In many ways, mum is the same person, but this can be a very stark reminder of her diagnosis.
Mixing dreams and reality
Confusing or merging fact with fiction can be another issue. The person is convinced that something has happened and the feelings associated with it are very powerful. My mum thought that she was being forced to leave her home to live somewhere she did not know and she was naturally very upset. This may have stemmed from a conversation we had had about the very opposite – how important it was for her to stay in her house, where she felt comfortable, and in the same town where she has lived for the last 50 years. Somehow things got muddled and I had to keep reassuring her that there were no plans for her to move. Now that we have had a chance to talk about it, she is more aware that her mind can play tricks and this has helped.