Interview 11- Carers of people with dementia

Age at diagnosis: 80

Brief Outline:

She managed for a time to care for her mother in her own home which was nearby but eventually had to agree to her going into a nursing home.

Background:

Carer is a married teacher with her own family responsibilities (1 daughter 1 granddaughter) looking after her widowed mother. She is the youngest daughter of three children. Her mother was diagnosed in 1996.

Further information about this participant can be found on socialcaretalk.org - Carers of People with Dementia

The daughter of a patient with Alzheimer's was concerned about the medication her mother was prescribed and took action to get it altered.

If you can deal with the behaviour without the medication and you, have got experienced expert carers and nurses who are able to deal with it without the medication obviously that's better. But there comes a point at which they do need medication and my mother is on medication and 'I think it is right that she is on medication. 

 

I then think that, what doesn't always happen is the medication is not always monitored enough and I think as with my mother's case and I am sure is the case with a lot of other people in a lot of homes the medication is used more than is necessary for the convenience of staff because it keeps people docile and it keeps them sleeping in the chair.

 

And I realise my mother needed medication because she was distressed all the time and anxious and worried and she, so she needed something just to take that edge off. And when I saw her sleeping, sleeping, sleeping, and very confused and I thought 'how much of this is Alzheimer's and how much is the medication?'

 

So I actually went to see her doctor. She is so lucky she has got this lovely young girl - I say young girl; she's probably in her 30s! - doctor, who is really nice and very thorough and very keen that we work together. And I hope I'm not a threat because we, are nice to each other. 

 

And I actually made an appointment at the surgery and I went to say that, 'I just want your advice but I'm not sure, I just wondered, I don't know about these things, but I'm wondering if my mother is very heavily sedated and whether there was any mileage, whether they could lift the sedation and if that made her too agitated whether there was some sort of anti-depressant because I know anti- depressants can work in a different way, they make you easier about life.

 

She said 'Oh I see what you're saying. I don't actually know but I'll phone the psycho-geriatric specialist and have a chat.' And the message came back that he thought it was worth a try and so that's what they've tried and they've lessened the tranquillisers, given her an anti-depressant as well and it may change tomorrow, you know, gradually it may change but at the moment my mother has got back a better quality of life and she's not. 

 

So she's talking, she doesn't talk sense but she's got the energy to talk. She'll laugh and when somebody will come up to her and say 'Hello' and she'll smile and if they say something that's a bit risqué she'll go 'Oh I don't know.' And that's how she used to in the old days, so she's got back a little bit of herself by the right balance of medication.

 

So I think if it's at all possible you don't use medication at all and obviously the professionals know better than I, when the medication should be brought in but I think there's a danger of it being used unwisely, indiscriminately if you like. And I think it's a shame that it can't be used more wisely that there aren't, well I think it's like education isn't it, health and education are under-funded and under-resourced and undermanned. And in an ideal world if there were sufficient people looked after a limited number of patients then that sort of thing could be carried out. And I know in this hospice in [town] that's what happens.

 

I don't think it would have happened to my mother if I hadn't been there actually, I think she'd be, have a less better quality of life. Yes, there comes a point at which medication is definitely needed because she couldn't, it would have been cruel to let her live a life of anxiety all the time and she was pacing and worrying and eaten up with anxiety so she needed something, it was just a question of the right thing. And people being encouraged to take the time and trouble to get it right. It seems right at the moment.