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Expert Q&A: Dealing with dementia and cancer – Wednesday 30th January, 2.30-3.30pm

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LorraineB

Registered User
Jan 23, 2019
44
Question 2: My mum is suspected of having lung cancer. Her previous battles with cancer have always involved invasive surgery, and I am not sure she’d be well enough to cope. I am worried about the effects of chemo and radiotherapy. Mum doesn’t understand or remember 99% of what is said to her in consultations, so where do I stand in terms of ‘consent’ for investigations or treatments which are proposed?
Thanks for your question.

There should always be an assessment of your mother’s mental capacity regarding the decision of any/each treatment being considered and discussed with your mother and family/loved ones. In order to have capacity she should be able to do each of the following four things:

1) Understand the implications of treatment and why it is required;

2) Retain the information given (this only has to be for a short period of time whilst being given the info or demonstrating she is able to weigh up risks and benefits - not an hour or more later);

3) Weigh up the risks and benefits of having treatment or not having treatment;

4) Be able to communicate her decision and understanding by various methods. E.g reading, writing, signs, pictures etc.

If she fails on any one of these 4 then she should be deemed as having no mental capacity for that specific decision and therefore a Best interest meeting should be held to discuss the options and way forward.

That meeting should include all those that know her well including professionals and friends/family and take into consideration her past wishes, whether it seems an unwise decision (we sometimes all make them in life and that should be considered as it may seem unwise to us but not them), and consider alternate options of treatments or the do nothing option.

If someone has Lasting Power of Attorney (LPA) for health (not finances) and the person is deemed to lack mental capacity regarding a certain decision then that appointed person should be listened to and their view acted on unless the Consultant feels the said person is at risk and the Consultant feels unhappy about performing the treatment .

The LPA for health needs to have been registered with the court and evidence of this shown to the relevant Consultant. It may be the family member who makes the decision after discussion with the treating team, however it is usually good practice to consider each individuals thought and what they personally feel is the best outcome.This can then be used to guide a decision.

If a person does have a LPA for health than it does not have to particular be a best interest meeting as they will have to right to make the decision but a planning meeting is often helpful to discuss decisions to be made. The above meetings should be documented and everyone given a copy of the decision made.

If a person with dementia can consent to treatment and this is evidenced they can sign the consent form. If not then a relative/nok should sign an alternative consent form along with 2 medics. The end outcome should really be about the impact of Quality of Life on that person and treatment isn’t always the best option if it impacts on that. This includes the person’s emotional, spiritual, psychological, physical and functional impact.

This link from the NHS website has further information on consent to treatment and capacity:
https://www.nhs.uk/conditions/consent-to-treatment/capacity/
 
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LorraineB

Registered User
Jan 23, 2019
44
Question 1: My mum has Alzheimer’s and Vascular Dementia and has been put on Letrezole tablets as a precaution following a mastectomy for breast cancer. Her dementia worsened following her operation, so I am wondering if Letrezole may affect her dementia too?
The dementia could have been exacerbated by the operation if general anaesthetic given and this can stay in the system for a long while. There is currently no evidence to suggest hormonal therapies as Letrezole do cause further deterioration however it can cause fatigue which may then impact on memory and concentration.
 
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LorraineB

Registered User
Jan 23, 2019
44
Question 3: I am asking for advice about how to deal with a lump found in my relative’s breast. She is 93 and frail but mobile. She is confused much of the time but can still speak and understand and converse about the past. I’m worried that she will not be up to mammogram, biopsy etc., let alone surgery or chemotherapy if it turns out to be cancer. We would like her to be as involved as possible in making her wishes known, but how do we ascertain her informed wishes on ‘big’ questions, when she is already being given care without her explicit consent? She often says ‘no’ to offers of food and assistance, but accepts them in the end, so how do we know the difference between a no that is said as a reflex, and a considered settled wish? Also, is there anything which can make getting to hospital appointments easier for someone who doesn’t want to leave her home?
A thorough Consultant would look at all aspects of whether to treat or not to treat. It is basically about weighing up the risks and benefits. If it is felt it is not the best scenario to treat as the prognosis may be poor than consider why put the relative through all those assessments which may potentially cause more harm than good. Things important to consider are her physical condition ( despite being 93 she may still be relatively strong and healthy). What is her support network. Does she require help or is she independent – How will treatment impact on this?. The outcome should be about Quality of Life. Is your relative happy at present and pain free, or has she got more agitated indicating she could be in pain?. You need to establish if your relative would stay still for say a biopsy or mammogram, if not it would it put her at risk of harm. Ask the Consultant what the treatment will involve and side effects of any potential treatment. Surgery for example will probably require General Anaesthetic Could it make her memory worse and impact on her social or daily functioning, plus she would probably be required to be admitted for hospital and taken out of own environment causing more confusion and potential delirium ( acute confusion). Would treatment impact on her life style, is she currently independent, would treatment affect this? What would happen if one did nothing, After a discussion with Consultant what is thought to be the prognosis?.

You will know your own relative and how they will usually react to situations. Sometimes it pays to be honest and tell the person they have a lump and that it may be a concern of cancer. Cancer is a powerful word which most people understand. Try and ask what they would want, if it was cancer would she want it to be treated or might she just say at 93 I don’t want treatment ( this is quite common). Sometimes you have to ask the questions in different ways and at different times as sometimes people are more lucid at certain times than others. Maybe involve a Speech and Language therapist –we often forget their forte is in communication. What would your relative possibly have wanted in the past?.

With regards hospital appointments – try and get one when they are at their best in the day, e g mid morning as rushing wont help their mood if an early appointment. Afternoon they may be more tired. Take them something to take their mind of things and distract them. Photos to look at, magazines etc. Ensure they have been to the loo before hand. If agitated at hospital ask if they want the loo. If they have word finding difficulties it may be easier to take them and say “I am going to the toilet,would you like to come?”.. Inform the staff they have a memory problem, they may not have that information and make assumptions that they can do more or understand more than they actually can.

Hope this helps.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 6: My mum has vascular dementia and ovarian cancer. Because of her quality of life with dementia and her frequency of TIAs we decided against any treatment for the cancer, we didn’t want to put her through any intrusive surgery and cause her distress. Her language is virtually nil now and my biggest concern is that the cancer is growing and developing, we have no idea if it’s pressing on anything or if it’s secondary anywhere (and we won’t because we don’t want any intrusive investigations), but she can’t tell us if she’s in any pain. What signs should I be looking out for to recognise if she is in any pain or discomfort?
Hi, You would be looking more for non-verbal signs of pain rather than verbal ones. Look out for shouting out, walking about, facial grimacing, rocking backwards and forwards, agitation or any new behaviour that seem different. It may be worth instead of asking have you any pain, ask does it hurt anywhere? Maybe ask can you point to where it hurts instead of asking where it is. Other signs may be losing weight, not eating, drinking, sleeping more, looking pale, crying, guarding parts of the body or just generally going quieter. Sometimes they may become more resistive if you touch them. Mainly watch for changes and observe them.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 8: Mum has vascular dementia and has now been diagnosed with terminal lung cancer. They cannot treat the cancer because she is so frail. I’ve found a lot of information for treatment but nothing about end-of-life care for someone with cancer and dementia. I’m worried about what to expect and how I can keep her comfortable. Do you have any advice?
End of life care for someone with dementia should be no different for someone without dementia as it still entails maintaining dignity and comfort. The difference however in people with dementia is sometimes about recognising pain in the person as they cannot always articulate pain. Look for new behaviour as shouting, agitation, face grimacing etc., Ensure regular analgesia is given to prevent pain. I would always monitor bowels; many of the opioids medications may cause constipation which in turn causes pain and agitation. I would always say if the person had not had bowels open for 3 days address this with the GP. Constipation cam cause toxins and further confusion and distress.

Ensure the person has small sips of fluids or even refuse keep their mouth moist. Towards end of life

Many people tend to refuse food, whilst this can be distressing for the relative to see, it can be nature’s way of the body shutting down. The brain is an organ and controls how other organs work, If this deteriorates than the other organs will so the person may struggle to swallow, breathe etc.,

It is difficult to know when people with dementia are approaching end of life and it can be a roller coaster ride for the family. Sometimes they appear semi-comatose and you believe the end is near and next they can be sat up singing, this may happen frequently. I would say if a person is developing more infections, more hospital admissions, losing weight and not eating this may be an indication they may be nearing end of life. Look also for colour of skin changing and changes in breathing, Ensure they are pain free, Macmillan Nurses may be helpful to aid with symptom control and Marie Curie nurses to aid with sitting services of the person chose to die at home. With regards medicines can some be reduced if the person is refusing to take then – what is the benefit of them now for example statins, blood pressure meds. Agitation may develop towards end of life but it is important to determine the cause for example is it constipation or new opiods commenced. Is the person still in pain?. The person may be placed on the Gold Standard Framework register with the GP, this should entail they get the correcct support.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 9: My dad has dementia and has recently been diagnosed with cancer as well. We haven’t told him about the cancer yet and I don’t know how to tell him or how he’d react or if he’d understand even if we did tell him. He’s not in any pain at the moment and I don’t want to frighten or upset him. I don’t know what will be the best thing to do for him. Do you have any advice and or experience on how other people have handled this situation?
Hi, The best advice I can give is that you will know your dad more than anyone else and perhaps reflect on this. Think how he has reacted to bad news in the past and perhaps what he would have wanted before his dementia. Dementia is a life limiting illness, how did he react to the news he has this? It also depends on what stage the cancer is at as many people live well with cancer now and in certain cancers survival rates are higher with new treatments. Everyone is an individual and some take the news better than others. From my own experience many are quite accepting of the condition but some are too advanced in their dementia to actually understand what they are being told. Many times relatives don’t want to mention the word cancer due to wanting to protect the person and fear of the person getting distressed and giving up. I think we need to remember that even when a person has dementia they still have rights and perhaps going against telling them their diagnosis is in fact sometimes going against their rights. When people are in the early stage of dementia and also get a diagnosis of cancer they may want to make plans and decisions for the future whilst they still can. Many of my own patients stress to me how important it is in being involved in decision making around treatments and how important this is to them for the future.

Cancer is a powerful word and often no matter how bad a person’s memory is they will often remember they have it if reminded. Many of our patients come for treatment for their cancer and often forget why they have come but are accepting of the treatment when that are reminded it is to help with their cancer. I can honestly say I have not worked with that many patients who become distressed when they have been reminded of having a cancer however I only see people after they have been referred and we feel it is appropriate and safe to treat. Various discussions will have taken place prior to treatment with the patient and loved ones/relatives. Most people’s fear of cancer is how it progresses and pain but I think if you ask what is the fear of the condition this will help in alleviating their fears. Macmillan do holistic needs assessment in order to tailor care to that individual and support their needs. Even with dementia this is still possible.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 10: I am wondering if you could give me any advice. Mum is 77 and has stage 1 breast cancer, the doctor has suggested hormone therapy (letrozole) or a mastectomy but I am concerned about how a mastectomy would affect my mum mentally and physically, and I’m anxious about her having to have general anaesthetic. I want mum to make a full recovery but I don’t want to put her through an operation if it’s going to give her a poorer quality of life. How does anaesthetic affect dementia? She doesn’t have the capacity anymore to tell me what she wants and I don’t know what to do.
Hi, there are several things to consider when a person is having a GA especially with a dementia. Some studies have suggested it leads to an Increase in levels of toxic amyloid and tau protein in the brain which would impair communication in the brain whilst others suggest it may cause some inflammation of the brain which may have correlation with why some people may be more confused post operation (post op delirium). Lower levels of oxygen in the blood may also play a part.

A good assessment of the person prior to considering a mastectomy is vital, taking into account the person’s other physical and mental health conditions, as well looking at how they function in their daily activities. An Occupational therapist and physiotherapist plus Consultant and nurse can play a big part in this. Discussions are vital particularly where the person lacks mental capacity regarding the decision to be made. Like you state the outcome should be around Quality of Life.

The other fact to consider is that GA usually entails a hospital stay which is not always in the person’s best interest when taken out of their familiar environment may cause issues in itself. Other factors as noise, increased risk of falls and developing hospital acquired infections should also be considered as not being in the person’s best interest. Ask for a best interest meeting with Consultant and other members of the team to look at all the alternatives. There is currently no evidence to suggest hormonal therapies as Letrezole does cause further deterioration however it can cause fatigue which may then impact on memory and concentration. Radiotherapy may be another option perhaps and worth discussion.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 11 (came in by email): Is it correct to hope that body exercises and be busy with computer in more languages could preserve from dangerous worsening of actual memory loss? I am 86 with cancer. Thanks for answer.
Hi Yes there is evidence to say if you keep your mind and body active it will help your memory loss, Exercise reduces stress which may be a risk of developing cancer
 

Saun_A

Administrator
Staff member
Jul 9, 2016
2,530
Thank you Lorraine. Really good answers to the questions. We will leave this discussion open until 3:30 pm as scheduled if anyone has any questions.
 

Countryboy

Registered User
Mar 17, 2005
1,487
Cornwall
Hi I'm sorry but I was asking a Question Just phone Alzheimers help line and got answer phone message leave a number and they will call back but it might take up to two day :(:)
 

Saun_A

Administrator
Staff member
Jul 9, 2016
2,530
Hi I'm sorry but I was asking a Question Just phone Alzheimers help line and got answer phone message leave a number and they will call back but it might take up to two day :(:)
Sorry to hear that. Lorraine has answered your question here.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 4: I am a carer for a friend with dementia. She is 88 and has been in a residential home for four years. Recently her physician found a lesion on her right breast. The doctor suspects it’s cancer, but also said those with dementia have a difficult time with mammograms and biopsies. Knowing her reactions to strangers, pain, hospitals and unfamiliar surroundings, I am unsure what to do: treat it as a sore; let it go until there is pain; consider quality of life vs recovery following breast operation? Any advice would be helpful for me.

Do you have Lasting Power of Attorney for health for your friend as if not the Consultant would usually make that decision using all the information they have of that person as to whether it would be in their best interest if the person in question does nit have the mental capacity to understand the implications of treatment. If the person tends to get agitated a mammogram or biopsy may prove difficult. A good assessment of the person prior to considering a mastectomy is vital, taking into account the person’s other physical and mental health conditions, as well looking at how they function in their daily activities. An Occupational therapist and physiotherapist plus Consultant and nurse can play a big part in this. Discussions are vital particularly where the person lacks mental capacity regarding the decision to be made. The outcome should be around Quality of Life.

The other fact to consider is that a mastectomy usually entails a hospital stay which is not always in the person’s best interest when taken out of their familiar environment may cause issues in itself. Other factors as noise, increased risk of falls and developing hospital acquired infections should also be considered as not being in the person’s best interest. Ask for a best interest meeting with Consultant and other members of the team to look at all the alternatives.
 

LorraineB

Registered User
Jan 23, 2019
44
Question 5: My friend’s mum has Alzheimer’s and has just been diagnosed with a brain tumour. She is having palliative care only and they have said she will be fast-tracked to a nursing home. The family have been told they will get £750 but will have to pay top up. I thought that as she is now being fast-tracked she should get full CHC funding, I thought CHC was the same as NHS hospital care, not financially assessed and fully inclusive?
I would question this if fast tracked that you need to pay towards nursing home. I would appeal the decision.
 
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