Making cancer treatment decisions for a family member with dementia
Have you had to make difficult decisions about whether or not to pursue cancer treatment with/for a family member with dementia? What factors are important to consider when making the decision? What advice would you give to others?
Below are some quotes from family carers of people with dementia and cancer who did and didn’t receive treatment for cancer.
Katy* cares for her mother with vascular dementia and ovarian cancer:
“So what they’d said to us was because of my mum’s vascular dementia and frequency of TIAs that they could put her to sleep, they could do a biopsy and investigate to find out what stage it was at, but the problem would be bringing her out because of the state her vessels are, she’s likely to have a stroke which could do even more damage. So we had to make a decision at that point as to do we go ahead and do treatment and investigations or is it palliative basically. And because of her quality of life with the dementia, and the state of the blood flow to the head etc. […] and it took an awfully long time and that’s where we really could’ve done with some support because my mum wasn’t able, she didn’t have capacity at this point to tell us what she wanted and obviously you don’t want to sign a death warrant for your mum. It came down to my brother and I, and in the end he wouldn’t make a decision so it came down to me. And we said no. You know, if she had a massive stroke […] it was the anaesthetist that really made my mind up. They know their business, I don’t. And I think the catastrophic injury that that would cause (a stroke) compounded by cancer and dementia, why would you do that to somebody? So we said no. So at that point she was moved to a hospice.”
Karen* carers for her mother with Alzheimer’s Disease and skin cancer:
“She has for a number of years had recurrent skin cancers. They’re non life-threatening, they are the sort of thing you die with, you don’t die of them. We know that she has quite a lot of these lesions, we know that at least one of them is not malignant, we’ve no idea whether the others are. They look like previous ones she’s had that have been malignant, and I guess the thing that’s challenging in terms of caring for her with the dementia and the cancer is knowing how far to go in terms of chasing up a potentially malignant condition and where that fits in relation to her dementia. And what’s the sensible thing to do? Do we pursue a diagnosis? There’s not much point pursuing a diagnosis if you’re not going to go for treatment, and if we did pursue a diagnosis and treatment, how would she cope with that? The last time she had one removed was about two or three years ago. It took a long time to heal, it took about six months to heal because they take quite a large area of skin around the lesion. She had to have it dressed every day and then twice a week for a long time and she was fine. But I’m not sure that she’d cope now, with that same level of intervention. So that’s probably the biggest issue is deciding when do we pursue it and when do we leave it alone.”
Richard* carers for his wife with dementia and bowel cancer:
“We said as we understand it the situation is if you don’t do anything, she’s gonna die. It’s so advanced. If you do, do something, we understand the risks fully. You’ve explained to us she might not withstand the operation. We said we don’t actually think there’s any choice there. I mean if you don’t do anything she’s definitely gonna die. If you operate, she might die. Where’s the decision? Operate. […] We’re very obedient and the doctor said it’s good to have these rounds of chemotherapy so we agreed that it was and went into it with complete enthusiasm. We didn’t have any reservations about doing it.”
Lisa* cared for her grandma with dementia and breast cancer:
“And when we got the results, we went back in and the doctor said it’s malignant, and they were concerned about her age. And we thought well we don’t think we can put her through this. They thought it would have more of an impact of her having an operation than it would her dying with it. So it was a mutual agreement with the hospital and us.”
If you would like to add your own experiences and thoughts to this discussion please feel free to comment below.
We would love to hear your feedback on the sub-forum 'Caring for a person with dementia and cancer'. Let us know what you think on this survey.
We would love to hear your feedback on the sub-forum 'Caring for a person with dementia and cancer'. Let us know what you think on this survey.