What are your experiences of a loved one receiving a diagnosis of cancer and dementia?
Below is the experience of a woman who cared for her husband with frontotemporal dementia and prostate cancer. In particular, she speaks of the difficulty of identifying her husband’s symptoms.
We’d be happy to hear others’ experiences of a diagnosis of both cancer and dementia and the challenges involved, so please feel free to comment below with your own thoughts and experiences.
“We noticed like many many people that as he got older, he started to dash to the loo a lot more frequently than he ever had. We took him to the doctor, this was the first time that I realised how difficult it is not to make assumptions when someone’s got dementia, because I assumed that Rick’s bladder had weakened out, hence all the visits to the bathroom, and the locum doctor did exactly the same thing, and she prescribed medication. Now horrendously, three days later Rick* was writhing in agony. His tummy was solid.
“I phoned NHS Direct to ask for advice and they told me to take him to the hospital. I took him to the hospital, four doctors tried to insert a catheter to drain his bladder but they couldn’t. Finally, one doctor was able to and he drew off double the liquid that should’ve been in a normal bladder. So this proved that instead of having an overactive bladder, Rick had exactly the opposite. But because he had dementia, he couldn’t explain to the doctor because he’d forgotten that all those times he went to the bathroom he wasn’t actually having a pee. And I didn’t know.
“So you see this is the challenge. This is the big big issue. When someone is living well with dementia, as Rick was […] but when another condition comes along, the person with dementia cannot assist a clinician to make the right diagnosis. They did a biopsy and they found that the material they took out of the prostate showed that Rick had prostate cancer.
“I think it’s important to emphasise that living with dementia and cancer is a very different issue from living with say cancer and a heart condition. The difficulty when somebody has short-term memory loss is that they can’t help clinicians to understand, and that’s where the carer comes in.
“So with short-term memory loss, that’s why Rick was misdiagnosed, and that’s I think the very big learning point, that with diagnosing another condition, the person with dementia is already at a loss because they can’t tell you what is happening and they can’t describe the pain. It’s rather like asking a three year old to tell you what hurts.
“It can be improved by helping, I think, carers of people with a dementia diagnosis to be alert to the sorts of warning signs for things. So that they know what to look out for rather than relying on the person living with dementia. There are a couple of pain scales out there, I think we ought to share those with the carers. But I think a massive thing we could do is to help clinicians to understand that they must be more inclusive. They need to diagnose holistically.”
What do other people think about this? Is this experience similar or different to your own? We’d be happy to hear your thoughts.
*All names have been changed to maintain anonymity.
Below is the experience of a woman who cared for her husband with frontotemporal dementia and prostate cancer. In particular, she speaks of the difficulty of identifying her husband’s symptoms.
We’d be happy to hear others’ experiences of a diagnosis of both cancer and dementia and the challenges involved, so please feel free to comment below with your own thoughts and experiences.
“We noticed like many many people that as he got older, he started to dash to the loo a lot more frequently than he ever had. We took him to the doctor, this was the first time that I realised how difficult it is not to make assumptions when someone’s got dementia, because I assumed that Rick’s bladder had weakened out, hence all the visits to the bathroom, and the locum doctor did exactly the same thing, and she prescribed medication. Now horrendously, three days later Rick* was writhing in agony. His tummy was solid.
“I phoned NHS Direct to ask for advice and they told me to take him to the hospital. I took him to the hospital, four doctors tried to insert a catheter to drain his bladder but they couldn’t. Finally, one doctor was able to and he drew off double the liquid that should’ve been in a normal bladder. So this proved that instead of having an overactive bladder, Rick had exactly the opposite. But because he had dementia, he couldn’t explain to the doctor because he’d forgotten that all those times he went to the bathroom he wasn’t actually having a pee. And I didn’t know.
“So you see this is the challenge. This is the big big issue. When someone is living well with dementia, as Rick was […] but when another condition comes along, the person with dementia cannot assist a clinician to make the right diagnosis. They did a biopsy and they found that the material they took out of the prostate showed that Rick had prostate cancer.
“I think it’s important to emphasise that living with dementia and cancer is a very different issue from living with say cancer and a heart condition. The difficulty when somebody has short-term memory loss is that they can’t help clinicians to understand, and that’s where the carer comes in.
“So with short-term memory loss, that’s why Rick was misdiagnosed, and that’s I think the very big learning point, that with diagnosing another condition, the person with dementia is already at a loss because they can’t tell you what is happening and they can’t describe the pain. It’s rather like asking a three year old to tell you what hurts.
“It can be improved by helping, I think, carers of people with a dementia diagnosis to be alert to the sorts of warning signs for things. So that they know what to look out for rather than relying on the person living with dementia. There are a couple of pain scales out there, I think we ought to share those with the carers. But I think a massive thing we could do is to help clinicians to understand that they must be more inclusive. They need to diagnose holistically.”
What do other people think about this? Is this experience similar or different to your own? We’d be happy to hear your thoughts.
*All names have been changed to maintain anonymity.
