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In a moving and highly personal blog to mark Dementia Awareness Week, a daughter talks movingly about her relationship with her mother who has the illness:
At first when we visited her we didn’t spot anything unusual.
But then I started noticing my mother didn’t join in the conversations as much as she used to.
I don’t know whether it was because she couldn’t follow the conversation, or the kind of thing we were talking about. She didn’t really tell stories anymore, possibly also because she couldn’t remember.
However, she used to be quite good in covering up her difficulties with her memory. She would avoid saying people’s names. Once I realised what she was doing, I started saying things like “Oh my daughter Lily” so that she would realise who I was talking about. I also started saying who I was at the beginning of our conversations.
Even when she recognises me and says “Oh, you are here!”, I’d respond “Yes it is me, Kate” to make sure she also knows my name and doesn’t have to worry about it.
I am very conscious of doing it in a way that doesn’t make her feel bad. Since she has been in the care home, we have the same conversation again and again. But at least we are having a conversation. So I don’t mind that I am telling her the same thing over and over again.
At this stage, the most important thing is to communicate. But the emotional side seems to remain and it almost became less inhibited. When she is feeling glad to see me, she is very affectionate and really happy. And when she first went to the care home, she said things like: “That nurse is really fat” quite loudly. Because of this lack of inhibition, I seem to get a much more direct connection with with my mother – sometimes good and sometimes not so.
This was also something we were told about before and that this was one of the features to expect.
The main thing was that people around my mother became aware of the circumstances which enabled us to help her better. Dementia is a condition that also affects the people around the person. In some cases it can even affect them more than the person who has dementia because they may sometimes not be aware of the things that they are doing.
I think it is great to do things like memory walks and memory boxes so that the memories that are there can be explored and celebrated. I think, depending on your circumstances, living with Alzheimer’s disease can make things in your day-to-day life a little bit more confusing. You might not remember where your room is or what you have eaten.
Therefore, I think it is nice to go back to the point in time where they are in terms of their most recent memories. I would like it if the care home would do more to exploren the things my mother can remember.
It was very interesting to know that the most recent memories would go first and that while my mother’s memory deteriorates she was going back in time. She started thinking she was a young girl back in Scotland. Sadly, she has forgotten all about her husband and living in Cornwall for 20 years. But she remembers being a young girl and suddenly says: “I have got to go home because I haven’t told my mum where I am!” At other times she says: “They are all dead aren’t they?” So she has short moments of clarity.
What I think is difficult for us relatives is that she can forget that she has been married and has children.
I think it is really important for relatives to have some kind of training and support, because otherwise you don’t understand that the person who is your mother can actually forget who you are.
On the surface that is quite hurtful, but it is important to understand that, at least in my case, it is not that she has forgotten all about me but that emotionally she can connect with me because in a way she does know who I am. For example when I go to visit her, she recognises me but she wouldn’t really know who I was.
In birthday or special occasions cards I have started to write more of a little story. This is really nice for her as she can re-read it anytime and it enables her to know what is going on and that she has family including grandchildren.
It also allows her to have conversations with the staff at the care home, as they may comment on her granddaughter having passed her A-levels, or some other event mentioned in the card.
I think there are so many ways by which we can enable people to live well with Dementia, whether it is the people having Dementia or those caring for them. It is all about taking time and understanding their specific circumstances and needs, and then working towards addressing them to the best of your abilities.