Expert Q&A: Dealing with dementia and cancer – Thursday 30th May, 3-4pm

[Countryboy]

I wish you well. You certainly sound like you have had a rough time.

HI LorraineB "Thanks" I just got to stay positive take one stage at a time its not easy but I’m getting there


xx

 

[LorraineB]

Hi Everyone, Its a pleasure to get the opportunity to answer any questions around concerns around caring for someone with cancer and dementia

 

[LorraineB]

Not sure where to go from here..... Mum has recently been diagnosed with terminal lung cancer so no treatment will be given. The consultant has given her 6-12 months. She has had liquid drained from her lung which seems to lessened her cough. Mum is reasonably active and is just managing to look after herself with a carer going in 3 times a day. Should we be contacting yourselves yet or is it too early? And is there Dementia MacMillan Nurses in all areas? as I feel we will need to have someone like yourself to help us cope with the complications of dementia. At the moment I only talk of the cancer until mum mentions it, is this the right thing to do? She hasn't said anything about it for a few weeks but I'm sure she does remember she has it by what else she says.
Both me and my brother live away from mum so we are distance carers for her which is a added issue.
What sort of support can a MacMillan Nurse give?

Hi,

I am so sorry to hear of your Mother’s advanced cancer and that treatment is more around palliation than a curative approach. It sounds like she is currently doing well though with her condition and doesn’t sound too distressed. The most important factor about a palliative approach is ensuring comfort and dignity is maintained and ensuring your mum is living her life pain free and with some quality of life. It is worth observing for changes in her mood or behaviour which may indicate a deterioration or potential pain. Often with dementia the dementia tends to get blamed rather than pain or potential depression.

I’m afraid as far as I am aware my role is unique to Macmillan, however over the past few years I have been travelling around the country teaching Macmillan Professionals about dementia so hopefully someone in your area may have attended. Hopefully she will be receive good palliative care anyway. Perhaps she may benefit from day care at a local hospice?

Has your mother been allocated a Macmillan Nurse? If not it may be worth asking to be referred to one. Even if she does not require symptom control at present it will get her in the service for if and when she may require it. As she has been given a rough time span for prognosis I suggest you ask her GP if she can put on the Gold Standard Framework which ensures her care will be discussed monthly and monitored by the GP.

Other things to consider if you have not done so already are thinking about Advanced Care Plans which will look at meeting her needs and planning for her future care/wishes. This again could be discussed with the GP or Macmillan. It may also be worth considering Lasting Power of Attorney for Finance and Health (if she still has the Mental Capacity to appoint someone to act on her behalf or in her best interest if she loses ability to make decisions due to her dementia).

I hope this information helps.

 

[LorraineB]

HI LorraineB "Thanks" I just got to stay positive take one stage at a time its not easy but I’m getting there


xx

Any concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.

 

[LorraineB]

There comes a time when the person you knew has been eaten away by dementia and you wonder why you’re going through the motions of getting their cancers cut out. I care for two. One has cancer and dementia, the other Parkinson’s, Alzheimer’s and arthritis. It’s tough looking after both and I manage because of my kid’s support. I didn’t want this for them though. It seems because we made the decision I am now also expected to ensure the chemist has delivered the injections to the clinic (which are used to keep on top of prostrate cancer.) It’s hard enough getting the PWD to the clinic in the first place. I no longer see the point of the treatments.

Hi, It sounds like you are feeling quite weary with the situation at present. Caring can be so stressful and it so important for you to have support. Do you have an Admiral Nurse Service available in your area to offer you support? Or it may be worth getting in touch with your local Alzheimer’s Society to see if they can offer you support. Have you had a carers assessment yourself which you are entitled to?

With regards the person with cancer, have they or yourself been offered a Holistic Needs Assessment which will help look at signposting for anything you or loved one may need support with. Ask at the GP surgery if anyone could come to the home to give the injections instead of going to the clinic, or ask if you can be referred to a Macmillan Nurse that can offer advice on what help may be available with this. I think the chemist may have some responsibility to deliver the injections to the clinic. How often is the person reviewed and is the treatment working? If not, may need a review from the Oncologist.

I hope this answer helps.

 

[LorraineB]

We've had this question come in via email:

"As my husband suffered not only dementia - moderate to high - but also severe delirium when in hospital procedures - is any examination that requires some intervention, anaesthetic etc worth it? I am beginning to think not, as I personally fall apart with just sundowning - very hard to keep the chin up!"

Hi,

People with dementia are more at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection. I would also question should a person with moderate to high stage of dementia be having a general anaesthetic, could there be an alternative for example local anaesthetic?

Hope this answer helps.

 

[LorraineB]

This is a just one paragraph from My Consultants letter to my GP

We have reviewed this at Urology MDT meeting and it is not suitable for partial nephrectomy or ablation so his options either lie with CT surveillance or complete nephrectomy. He is completely asymptomatic from this and independent.

I am aware that if he has a general anaesthetic this could worsen his dementia and give him cognitive impairment for up to 18 months.

Taking all factors into consideration he would rather keep an eye on things for now. We have agreed to repeat the CT scan in six months’ time and he has requested I see him with his family in the clinic with the result so we can have a further chat about weather it is safe to continue surveillance or weather nephrectomy is required.

I decided to go for six months surveillance fingers crossed hopefully it was the right one

Sounds like a sensible plan. Watch and wait can be good practice

 

[LorraineB]

Another question that came through:

"What advice would you give for explaining information given to us in my mother’s oncology appointments to her afterwards? The doctor usually speaks mostly to me which doesn’t advocate my mum’s independence in any way, she struggles to understand and always asks me loads of questions afterwards. I find it hard to explain it to her in a way that she will best understand or that won’t upset her too much. It’s hard to know what is best to say (or not to say) and I just want to keep her happy."

Hi, It can be difficult at times giving and retaining information when someone has dementia. It might be worth asking the Oncologist to explain things to your mother in a simple way, not overloading her with too much information. Explain she needs information given more simplistically if need be. Would he/she drawing diagrams help? Believe it or not people with dementia are usually pretty resilient when explaining and talking to them about their cancer. Be as honest as you can be with her. It is sometimes families that struggle rather than the person themselves as a way of wanting to protect their loved ones. It might help to ask if there is a Clinical Nurse Specialist to go into the appointment with you and then after the Consultation ask them to answer any questions you may have or want clarifying. There are 2 Macmillan/ Dementia UK Booklets available titled Cancer and Dementia which you may find useful which are available from Macmillan information centres or online https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspx

One is for carers and the other for patients. I hope this answer helps.

 

[LorraineB]

Another question we've had:

"My father is 86 and has mild dementia and was recently diagnosed with cancer. We are worried about the effects of different treatments on his dementia. If we opt for surgery, what are the potential effects of anaesthetic on his dementia? And are these likely to be temporary or permanent? And can chemo have an impact on a person’s dementia? We don’t want to try and cure one if this might make dad’s dementia worse."

Hi, It’s a difficult question to answer as it all depends on the type of cancer and stage and prognosis of the cancer. Also it would depend on your father’s physical health too. The outcome should really be about your father’s quality of life and how treatment will impact on this. As he only has mild dementia, he may have more options around treatments but again it depends on whether he has any other physical or medical issues which may impact further on his health and put him at risk. General anaesthetic isn’t a great option for people with dementia as it can stay in the system a while and exacerbate the dementia. There is also the risk of developing a delirium (acute confusion) after this which could take a while to resolve and be distressing for the person and their family. People with dementia are 10 times at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection.

Looking at treatment options should be considered. Could surgery be performed under local anaesthetic? For example, at my Trust we offer this for people having skin cancers removed. Without knowing his cancer it is difficult to determine, could spinal surgery be offered? Radiotherapy perhaps? Chemotherapy although this can cause further issues cognitively and it is important for the person to be able to recognise if they are becoming ill which can be difficult if they may live alone. Infection may develop quickly with chemo. Sometimes doing nothing is an option, watching and waiting. Ask what would happen if we do nothing? Is treatment for curative intent or palliation?

It is all about weighing up the risks and benefits of treatment – will it make the dementia worse or impact on his quality of life or will it help his quality of life to reduce pain, discomfort etc. Don’t be afraid to ask the Oncologist to explain about ALL the options available including side effects.

Involve dad in all discussions. Does he have the mental capacity to understand, retain, weigh up risks and benefits and communicate his decision around treatment? If not, will he require a best interests meeting? What would his past wishes have been? Do you have Lasting Power of Attorney for HEALTH? If so you are his voice. There are 2 Macmillan/Dementia UK Booklets available titled Cancer and Dementia which you may find useful which are available from Macmillan information centres or on line https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspx

One is for carers and the other for patients. I hope this answer helps.

 

[LorraineB]

Dad is having no treatment for his oesophageal cancer just palliative stents so that he can eat. He has no recollection of having cancer or that he has had stents.

We followed the advice of dad's oncologist who did not recommend chemo for dad due to his age 89 frail state of health and his dementia. She said that chemo would make dad ill and probably spoil any remaining time he had. I am so glad that we did as dad has had 13 months since diagnosis and is still symptom free and very happy. A good choice in dad's case.

Dad has been referred to the hospice and we have had a visit from a Macmillan nurse who was very helpful and even arranged for dad's doctor to visit and fill out a DNAR form for him.

Hi, that sounds like good and sensible practice and so pleased to see you have the support from Macmillan. The outcome should always be about maintaining quality of life for the person which isn't always active or curative treatment. I wish you and your father well.

 

[LorraineB]

Here we have another question that came through:

"How do I explain my mum’s side effects of chemotherapy to her? Sometimes she remembers she’s having cancer treatment and accepts the side effects she’s having, other times she forgets she even has cancer and becomes bemused and upset by her side effects (tiredness, vomiting, hair loss). I don’t know whether to keep reminding her and upsetting her more or say it’s something else instead?"

Hi,

It’s a difficult one to answer as ethically you don’t want your mum to become distressed. I guess for me it’s about keeping things as honest and consistent as possible. When she is getting upset perhaps say something like, “Mum do you remember the discussion about your cancer and how the chemotherapy may affect you, that’s why you are feeling sickly today”. It might work it may not. Perhaps distraction may help if she becomes too upset, talking about something she enjoys or perhaps play some calming music. You may find the chemotherapy may actually make her a little more confused and forgetful. Have you tried writing things down for her that may act as a reminder? I guess with the hair loss this must be devastating for her, perhaps trying to listen to her concerns and giving her the opportunity to voice her anxiety may help rather than trying to avoid it. I guess this area in particular is where empathy is required as just because she has dementia doesn’t mean to say she won’t feel sad in seeing her hair fall out. I hope this answer helps.

 

[LorraineB]

And another:

"How can I best keep my Dad relaxed and calm throughout cancer treatment? He can become agitated and distressed throughout the long waits before and the chemo itself. I hate seeing him worried and want to do my best to make him as comfortable as I can."

Hi, Trying to get a time of day which is better for him to have the chemo may help as perhaps getting him up too early or later in day if tired may not help with his agitation. Would something like giving him an iPad to watch old comedy sketches/programmes e.g Morecombe and Wise or whatever he enjoyed help? Perhaps music via headphones may help. Making a photo album or a memory box and utilising these may also help or reminiscing about things that made him happy e.g. holidays. I guess the key is about activity really. Does he play dominoes etc. Reassurance and reminding him of what is happening and the time may help particularly if no clock in sight as to him it may seem forever if disorientated. I hope this is helpful.

 

[LorraineB]

We've had another question come in ahead of today's Q&A:

"My mum was recently diagnosed with cancer, I’m worried that if we mention her dementia diagnosis in her cancer appointments it might affect her cancer treatment options. How should I mention her dementia and will this have any impact on her options?"

Hi,

This is similar to another question I was asked earlier so I shall aim to give a similar answer. Each person with dementia is individual so therefore treatment options should be individual. Your mother may have dementia but be physically fit and healthy and if so that should be taken into account. If she has dementia but is also physically unwell with other medical issues then that too should be considered. In theory dementia itself should not prevent any treatment but it is about getting the appropriate (if any) treatment and everyone should be assessed in their individual circumstance. At my own Trust many patients have had good outcomes with Oncology treatments where they have also had dementia.

Treatment will depend on the type of cancer and stage and prognosis of the cancer, as mentioned previously it will also depend on your mother’s physical health too. The outcome should really be about your mum’s quality of life and how treatment will impact on this. General anaesthetic isn’t a great option for people with dementia as it can stay in the system a while and exacerbate the dementia. There is also the risk of developing a delirium (acute confusion) after this which could take a while to resolve and be distressing for the person and their family. People with dementia are 10 times at risk of developing a delirium. It can however with good care be prevented. Things like monitoring pain (observing for pain, agitation, grimacing, shouting out etc rather than asking if they have pain should be the norm). Encouraging fluids to be taken and recorded on chart, and monitoring bowels to prevent constipation may all prevent delirium. Also things like familiar objects and lights on at night may help. Avoiding invasive therapies like catheters can also help which may cause risk of infection.

Looking at treatments options should be considered. Considerations like could surgery be performed under local anaesthetic (for example at my Trust we offer this for people having skin cancers removed), without knowing the cancer type it is difficult to determine. Could spinal surgery be offered? Radiotherapy perhaps? Immunotherapy? Chemotherapy although this can cause further issues cognitively and it is important for the person to be able to recognise if they are becoming ill which can be difficult if they perhaps may live alone. Infection may develop quickly with chemo. Sometimes doing nothing is an option, watching and waiting. Ask what would happen if do nothing, is treatment for curative intent or palliation? It is all about weighing up the risks and benefits of treatment – will it make the dementia worse or impact on quality of life or will it help her quality of life to reduce pain, discomfort etc. Don’t be afraid to ask the Oncologist to explain about ALL the options available including side effects.

Involve mum in all discussions. Does she have the mental capacity to understand, retain, weigh up risks and benefits and communicate her decision around treatment. If not will she require a best interests meeting? What would her past wishes have been? Do you have Lasting Power of Attorney for HEALTH? If so you are her voice. You may find the Cancer and Dementia booklets useful which are available from Macmillan information centres or on line https://be.macmillan.org.uk/be/p-23946-a-guide-for-people-with-cancer-and-dementia.aspx

One is for carers and the other for patients.

 

[LorraineB]

Another question that has come through:

"My husband has Alzheimer’s and bowel cancer. Getting him to the frequent hospital appointments for his cancer and treatment is a challenge to say the least! Especially when he forgets we are going / why we are going. Do you have any advice on how to make this easier for us both?"

Hi, It may help if you try to plan treatment at a time which may be better for him. For example, he may need more time to get ready in the morning and rushing will not help his anxiety. If you mention this to the receptionist/therapists they should be able to help with this. Perhaps aim to make the day a more positive experience than negative, e.g. “You have to go for your cancer treatment again today but how about after we go for a nice cup of tea and a cake later - what do you think?” Sometimes it gets easier for the person when it becomes a little more familiar to them and they get into a routine. Depending on what the treatment is it is may be worth asking if they could have a familiar face to work with them consistently, e.g. the same radiotherapist.

I am guessing it will be quite tiring for you. Is there someone who could take him one day for his appointment for example a member of family to give you a little break? Don’t be afraid to ask. Trying to get things organised the night before may also help a little, putting clothes out etc for him. Reassure him and remind him what he is going for and why as he may forget and need prompting. He may be anxious about going somewhere outside his comfort zone. Tell him he will be safe and will be coming home after treatment. Identify if there is a trigger that makes him anxious and work with that. For example, he may worry he won’t be able to find the toilet etc so will need reassurance around that. I hope this answer helps.

 

[Countryboy]

Any concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.

HI LorraineB I have been in contact with Macmillan cancer care and get regular email updates but whilst I’m holding off the Surgery at moment not much they can help with maybe a different in September after my next CT scan I also have the Masonic Charitable Foundation primed and ready if needed so I’m on top of the game hopefully I wont need either

xx

 

[molliep]

Thank you @LorraineB for your detailed answers. We will leave this discussion open until 4pm as scheduled in case anyone has any more questions.

 

[LorraineB]

If you are affected by dementia and cancer please read the Macmillan booklet devised by Macmillan and Dementia UK. There are two available one for the person with dementia to read and the other for the carer. It gives advice on cancer treatment options and what to consider, and where to access emotional, practical and financial support (Did you know there is a Macmillan grant available to help with finances for example?). They are available from Macmillan information centres or accessible online. Maggie's Centres are also wonderful places for cancer support if you have one in your area.

 

[LorraineB]

HI LorraineB I have been in contact with Macmillan cancer care and get regular email updates but whilst I’m holding off the Surgery at moment not much they can help with maybe a different in September after my next CT scan I also have the Masonic Charitable Foundation primed and ready if needed so I’m on top of the game hopefully I wont need either

xx

You sound pretty clued up which is great. I wish you all the best in relation to both your conditions.

 

[LorraineB]

Thank you @LorraineB for your detailed answers. We will leave this discussion open until 4pm as scheduled in case anyone has any more questions.

It has been a pleasure and I hope useful to all affected by the two conditions.

 

[molliep]

Okay everyone, that brings us to the end of today’s Q&A on dementia and cancer. I hope it was helpful.

We’d really like to hear your feedback on this sub-forum ‘Caring for a person with dementia and cancer’. You can let us know what you think and give any suggestions for improvement by completing the feedback survey (either online or via telephone). You can complete the online survey here. If you’d prefer to complete the survey via telephone, please contact me at m.price@leedsbeckett.ac.uk.

Thank you very much @LorraineB for kindly giving us your time and expertise.

Best wishes,
Mollie