07:34 Thursday 9th June 2011
Peterborough Breakfast Show
BBC Radio Cambridgeshire
PAUL STAINTON: A campaign has been launched for an end to the inappropriate use of anti-psychotic drugs for people with dementia. The campaign, by the Dementia Action Alliance, includes 50 prominent health and social care organisations. Eric Berger from Cambridgeshire looked after his wife when she developed Alzheimers. She died just over two years ago at the age of 77. Sarah Varey went to talk to Eric up amongst the windy treetops on his fourth floor balcony.(TAPE) (VIOLIN MUSIC)
ERIC BERGER: Interestingly, music seems to keep its hold on people with ementia long after they’ve lost their ability to do many other things. There’s something very basic about music, and I know that a piece like this piece of Schubert gave my wife enormous pleasure, however ill she was. The music always seemed to work. One can only call this magic.Her name was Daisy. She actually came over to this country just before the war as an Austrian Jew. She came from Vienna, and so in fact she was probably lucky to be alive. She worked as an educational psychologist. There were little things I noticed. First of all was her syntax. We used to go on holiday, if we sent postcards home, it wasn’t a question of being picky, her syntax was a touch strange, which was unlike her. And the worrying thing is that when I pointed it out to her she couldn’r see it was wrong. I also noticed if we went out to dinner with friends, I myself often go off at a tangent, but she would be talking about things that were not relevant to the general tone of the conversation. I looked after her at home for, I can’t remember, three or four years. We had problems that .. we had to do a lot of walking. It’s as if the person with Alzheimers is going on a mission, although you don’t know what the mission is. And on a couple of occasions she actually slipped out of the house when I wasn’t aware. On both occasions I called the police, on one occasion there were helicopters. So I eventually had to lock the door. My GP suggested an anti-psychotic, risperidone. I came home and checked this on the internet, and discovered that the Alzheimers Society were very agin anti-psychotics, and they were not the only body that were agin it, I then consulted the psychiatrist who had seen my wife, and he said, look, it’s not a black and white issue. You may find it helpful. From my point of view, I found that I would give her some risperidone every evening, and it enabled her to live at home for a year longer than she would have done otherwise. You can take risperidone in orange juice, not in tea, because tannic acid affects it. So I’d pour her an orange juice. I’d pour myself a whisky, put Ella Fitzgerald on the record player, and that would be out five o’clock jolly life, yes, yes. (LIVE)
PAUL STAINTON: That’s Eric talking to Sarah Varey about looking after his lady wife with Alzheimers, and I have to say my Grandma, a lovely old lady, she had Alzheimers for the last two years of her life. It really was a debilitating couple of years, and just distraught really, that you couldn’t get through to her, couldn’t talk to her, and couldn’t have normal conversations with her. Dr Marie Jansn is Director of Development for Alzheimers Research in the UK. Morning Marie
MARIE JANSON: Good morning.
PAUL STAINTON: I suppose my story and Eric’s story are played out right across the UK. But you do get little shafts of light. I know my Nana, every now and again,.you’d see the little twinkle in her eye come back, and she’d say something and you’d think, oh, she is there.
MARIE JANSON: I know.
PAUL STAINTON: But these drugs don’t offer any of that, do they, these psychotropic drugs don’t offer any of those twinks of light at all.
MARIE JANSON: No I mean they are commonly known as a chemical cosh. And that’s what exactly people perceive them to be, as a way of knocking the life out of people. We actually carried out, at the Alzheimers Research UK, we carried out research in 2009, that showed that not only do they have this effect on people, but they actually had very little or no effect on the actual symptoms they’re being prescribed for. And they probably halve the life of those that are taking the drugs. They are very dangerous too.
PAUL STAINTON: And a lot of the time Alzheimers patients can be quite physical, can’t they? They do need constant care, constant looking after. And it can be physically demanding. But it seems to me like a lot of the time, these drugs are just used because people just think it’s easier. It’s a lazy fix.
MARIE JANSON: That’s right. They can be sometimes used more for the convenience of the staff than for the benefit of the patient. And that is definitely wrong. They obviously have a role to play, but it’s a very limited role, and it should really be for extreme cases. And what we’re calling for is that anybody who is either on these drugs, or even suspected to be on these drugs, because sometimes they are prescribed without relatives being told about it, that they are …
PAUL STAINTON: Really? That’s amazing.
MARIE JANSON: Really. So they need to be constantly reviewed and questioned, do we still need these drugs? There are other ways you can deal with it. First of all, I know it’s difficult for people with dementia, they’re not very good at communicating, but it’s important we rule out any other reason for agitation. If you can imagine somebody with dementia and toothache, you can imagine how agitated they would be for example. So things like that need to be looked at as well.
PAUL STAINTON: Are there no checks and balances over the prescription of these drugs?
MARIE JANSON: I’m not sure. It depends on the setting. These can be prescribed in hospitals and in nursing homes, and in some cases by GPs, but that’s very rare. So it’s up to the nursing home what policies and procedures they have. And it’s up to relatives and carers to ask the questions and challenge.
PAUL STAINTON: There are 180,000 people on these drugs in the UK with dementia. How hopeful are you that your campaign now, with 60 of the UK’s most prominent health and social care organisations calling for this, how confident are you that you can be successful?
MARIE JANSON: I think we can be successful if we can raise the general public’s awareness of this issue, and they can bring the issue back to the nursing homes and the doctors, and raise the questions. then I think we can be very successful.
PAUL STAINTON: Well we wish you all the best. Marie, thank you for coming on this morning. Dr Marie Janson, Director of Development for Alzheimers Research in the UK. It really is one of those diseases that nobody wins from really, and nobody comes back from.