A dementia carer holds the hand of a patient. Photograph: Sarah Lee/Guardian.
A typical hospital ward is ill-equipped to recognise and meet the daily needs of a dementia sufferer
COMMENT IS FREE
By Andrea Gillies
Four years ago I found that I had become a dementia carer, when my my mother-in-law Nancy, who has Alzheimer's, moved in. She's in care now, in a good dementia unit, but during the years she was with us, the illness transformed an articulate friendly person and attentive granny into a paranoid, hostile, ranting woman who thought herself at various times to be 28 and unmarried, or the chief executive of a large company, or the king of Scotland, and at all times to have a life somewhere else that we were conspiring to keep her from. She wasn't always physically well, but it became imperative that we try and keep her out of hospital, fearing that would be a terrible cruelty. An odd way to think, on the face of it.
A quarter of hospital beds are occupied by people over 65 with dementia. Some are there because they are ill with treatable conditions. Some for social reasons. Others, and this is less obvious, because once the transient condition that led to admission is sorted out, they're not felt to be well enough to leave. NHS staff don't always understand that people live their lives with dementia, and that this is as well as they're ever going to be.
Hospitals run on information and on chain of command. They depend on patients speaking up. I've heard many stories from other carers about dearly loved parents rapidly losing weight and hope in wards, left sitting in their own faeces, distressed and misunderstood. It's horrifying that elderly people should be discharged from hospital in a much worse physical state than when they went in, but that's what's happening, as this week's release of a survey by the Alzheimer's Society reveals.
People with dementia lose the ability to put into action the sequential intellectual steps needed to initiate the very ordinary: to take their pills, to use the bathroom, to eat and drink. Unless NHS staff are alert to this, neglect, benign or otherwise, can lead to a rapid deterioration. Emotional upset is a further complication. People who can no longer make memories are likely to be in a state of permanent panic, and panic can lead to aggression. A shocking 144,000 people with dementia are on wrongly prescribed antipsychotics, and about 1,800 of these a year are killed by these medicines – drugs that are often administered only as a means of control. "There isn't time to deal with her tantrums" a staff nurse told someone I know, of her disoriented and anxious mother.
The urge to walk, walking and pacing up and down, is common in dementia, and this has to do with urgent, non-specific prompts that they should be elsewhere and should be busy. Pacing isn't tolerated in hospitals. When Nancy lived with us, we had to keep the doors locked: she'd go out on to the road in the middle of the night otherwise, looking for her old life. During a short hospital stay she managed to break out of the ward twice, once through a fire door and into the grounds. This seemed to take the staff by surprise.
An ordinary hospital ward is ill-equipped for the life a dementia sufferer leads. Nancy's days are made as good for her as they can be. She has the freedom to walk about. She has people to talk to who are tolerant of her gibberish and reciprocate it, and staff who understand her darker moods. They notice things that are wrong. They make sure she's fed and watered and clean. When she got to the stage where she wouldn't eat unless she was allowed to do so on the move, that was fine. It wouldn't be fine in a hospital ward.
There, she'd be frightened and angry. She wouldn't eat and would end up on a drip. She'd try to tear out the drip and would be sedated. And that, likely as not, is how she would end her days. [rc]
© Guardian News and Media Limited 2009
November 17, 2009
UK: The cruelty of neglect
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LONDON, England / The Guardian / News / Culture / November 17, 2009
Alzheimer's Society Report urges NHS to cut dementia patients' hospital stays
A dementia carer holds the hand of a patient. Photograph: Sarah Lee/Guardian.
A typical hospital ward is ill-equipped to recognise and meet the daily needs of a dementia sufferer
COMMENT IS FREE
By Andrea Gillies
Four years ago I found that I had become a dementia carer, when my my mother-in-law Nancy, who has Alzheimer's, moved in. She's in care now, in a good dementia unit, but during the years she was with us, the illness transformed an articulate friendly person and attentive granny into a paranoid, hostile, ranting woman who thought herself at various times to be 28 and unmarried, or the chief executive of a large company, or the king of Scotland, and at all times to have a life somewhere else that we were conspiring to keep her from. She wasn't always physically well, but it became imperative that we try and keep her out of hospital, fearing that would be a terrible cruelty. An odd way to think, on the face of it.
A quarter of hospital beds are occupied by people over 65 with dementia. Some are there because they are ill with treatable conditions. Some for social reasons. Others, and this is less obvious, because once the transient condition that led to admission is sorted out, they're not felt to be well enough to leave. NHS staff don't always understand that people live their lives with dementia, and that this is as well as they're ever going to be.
Hospitals run on information and on chain of command. They depend on patients speaking up. I've heard many stories from other carers about dearly loved parents rapidly losing weight and hope in wards, left sitting in their own faeces, distressed and misunderstood. It's horrifying that elderly people should be discharged from hospital in a much worse physical state than when they went in, but that's what's happening, as this week's release of a survey by the Alzheimer's Society reveals.
People with dementia lose the ability to put into action the sequential intellectual steps needed to initiate the very ordinary: to take their pills, to use the bathroom, to eat and drink. Unless NHS staff are alert to this, neglect, benign or otherwise, can lead to a rapid deterioration. Emotional upset is a further complication. People who can no longer make memories are likely to be in a state of permanent panic, and panic can lead to aggression. A shocking 144,000 people with dementia are on wrongly prescribed antipsychotics, and about 1,800 of these a year are killed by these medicines – drugs that are often administered only as a means of control. "There isn't time to deal with her tantrums" a staff nurse told someone I know, of her disoriented and anxious mother.
The urge to walk, walking and pacing up and down, is common in dementia, and this has to do with urgent, non-specific prompts that they should be elsewhere and should be busy. Pacing isn't tolerated in hospitals. When Nancy lived with us, we had to keep the doors locked: she'd go out on to the road in the middle of the night otherwise, looking for her old life. During a short hospital stay she managed to break out of the ward twice, once through a fire door and into the grounds. This seemed to take the staff by surprise.
An ordinary hospital ward is ill-equipped for the life a dementia sufferer leads. Nancy's days are made as good for her as they can be. She has the freedom to walk about. She has people to talk to who are tolerant of her gibberish and reciprocate it, and staff who understand her darker moods. They notice things that are wrong. They make sure she's fed and watered and clean. When she got to the stage where she wouldn't eat unless she was allowed to do so on the move, that was fine. It wouldn't be fine in a hospital ward.
There, she'd be frightened and angry. She wouldn't eat and would end up on a drip. She'd try to tear out the drip and would be sedated. And that, likely as not, is how she would end her days. [rc]
© Guardian News and Media Limited 2009
A dementia carer holds the hand of a patient. Photograph: Sarah Lee/Guardian.
A typical hospital ward is ill-equipped to recognise and meet the daily needs of a dementia sufferer
COMMENT IS FREE
By Andrea Gillies
Four years ago I found that I had become a dementia carer, when my my mother-in-law Nancy, who has Alzheimer's, moved in. She's in care now, in a good dementia unit, but during the years she was with us, the illness transformed an articulate friendly person and attentive granny into a paranoid, hostile, ranting woman who thought herself at various times to be 28 and unmarried, or the chief executive of a large company, or the king of Scotland, and at all times to have a life somewhere else that we were conspiring to keep her from. She wasn't always physically well, but it became imperative that we try and keep her out of hospital, fearing that would be a terrible cruelty. An odd way to think, on the face of it.
A quarter of hospital beds are occupied by people over 65 with dementia. Some are there because they are ill with treatable conditions. Some for social reasons. Others, and this is less obvious, because once the transient condition that led to admission is sorted out, they're not felt to be well enough to leave. NHS staff don't always understand that people live their lives with dementia, and that this is as well as they're ever going to be.
Hospitals run on information and on chain of command. They depend on patients speaking up. I've heard many stories from other carers about dearly loved parents rapidly losing weight and hope in wards, left sitting in their own faeces, distressed and misunderstood. It's horrifying that elderly people should be discharged from hospital in a much worse physical state than when they went in, but that's what's happening, as this week's release of a survey by the Alzheimer's Society reveals.
People with dementia lose the ability to put into action the sequential intellectual steps needed to initiate the very ordinary: to take their pills, to use the bathroom, to eat and drink. Unless NHS staff are alert to this, neglect, benign or otherwise, can lead to a rapid deterioration. Emotional upset is a further complication. People who can no longer make memories are likely to be in a state of permanent panic, and panic can lead to aggression. A shocking 144,000 people with dementia are on wrongly prescribed antipsychotics, and about 1,800 of these a year are killed by these medicines – drugs that are often administered only as a means of control. "There isn't time to deal with her tantrums" a staff nurse told someone I know, of her disoriented and anxious mother.
The urge to walk, walking and pacing up and down, is common in dementia, and this has to do with urgent, non-specific prompts that they should be elsewhere and should be busy. Pacing isn't tolerated in hospitals. When Nancy lived with us, we had to keep the doors locked: she'd go out on to the road in the middle of the night otherwise, looking for her old life. During a short hospital stay she managed to break out of the ward twice, once through a fire door and into the grounds. This seemed to take the staff by surprise.
An ordinary hospital ward is ill-equipped for the life a dementia sufferer leads. Nancy's days are made as good for her as they can be. She has the freedom to walk about. She has people to talk to who are tolerant of her gibberish and reciprocate it, and staff who understand her darker moods. They notice things that are wrong. They make sure she's fed and watered and clean. When she got to the stage where she wouldn't eat unless she was allowed to do so on the move, that was fine. It wouldn't be fine in a hospital ward.
There, she'd be frightened and angry. She wouldn't eat and would end up on a drip. She'd try to tear out the drip and would be sedated. And that, likely as not, is how she would end her days. [rc]
© Guardian News and Media Limited 2009
