"Carers Group Run by the Alzheimers Disease Society in Sheffield"

I am a member of the Patient Opinion team and attended a Carers group run by the ADS here in Sheffield. It was a lovely group, thanks to all who shared their experiences of care and treatment. As you can see there were a range of comments and feedback.

This was a group of 9 carers who attended an involvement event run by CLAHRC and the Alzheimer’s Society Sheffield. The group wished for their feedback to be posted anonymously onto Patient Opinion in order to provide feedback to the local hospitals.

One carer spoke about his wife’s distress about the way her diagnosis had been given to her at Neurology Clinic. It had been in her words off hand, matter of fact and she had been given no time to ask questions.

Another carer also spoke about her husbands experience at Neurology where he had attended for 18months and had not received a diagnosis but had been tested so much that he refused to go back again. She went to her GP after this and was referred to Memory Clinic where he was diagnosed.

Getting lost in hospital environment and very poor signposting in hospitals – several people spoke about this, and one person gave an example of her husband being given complicated written instructions about how to get to a department when the one he normally went to was closed. It was suggested that you need people to take you to places. Someone in the group said that there are volunteers who do this on B Floor at RHH.

Several carers talked about the dilemma of whether to tell staff that the person they were with had dementia. Some people said that their partner was very open about their diagnosis but others felt that the person with dementia would not want others to be told.

A couple of people talked about feeling not listened to by staff; that their knowledge of the person was ignored

Waits are very hard for people with dementia, people talked of long waits, up to two hours for an out-patient appointments

One person gave an example of a nurse giving a person with dementia complicated verbal instructions for their medication on discharge which they clearly were not able to remember.

One carer talked of a very positive experience of calling 999 and subsequently going to A&E and then onto a ward. He said that he and his wife who has advanced dementia were always treated courteously and everything had been explained well throughout her stay. They did have a long wait in A&E but overall he had been very pleased with their experience.

One carer spoke about having to go for an appt for herself and her husband had had to come with her, even into the appt because he would have gone looking for her if he had been left outside. Also she had had a panic about him going to the toilet and what would happen if she got called in whilst he was still in the toilet. She needed to be there when he came out so he wouldn’t get upset by her absence or leave the area to look for her. Sometimes it would be helpful if clinic staff could help in these situations.

Another example from a carer of a difficult time at hospital had been when her husband had had to have a test involving drinking a lot of fluid and not going to the toilet so that he had a full bladder. He had had to wait with a full bladder for his scan but could not remember the instructions so had become angry and distressed. Do staff understand the difficulties that people with dementia and carers can have with investigations like this?

One carer spoke about how distressing it had been to visit a relative who had dementia in hospital to find them in dirty wet clothes.

Several carers agreed when someone talked about their concerns for the future, in particular if they ever needed to go into hospital and what would happen to the person they cared for? This was a significant worry for them.