How can I make trips to the hospital for oncology appointments/treatment easier?

[molliep]

How can I make frequent trips to the hospital for oncology appointments and/or cancer treatment easier for myself and my loved one with dementia and cancer?

Family members and carers play a vital supportive role for people with dementia, particularly in helping them to engage with and navigate healthcare systems and care, which are important when also diagnosed with and receiving treatment/care for cancer.

Hospital visits can be particularly challenging for people living with dementia and their family carers. I have created this thread for discussion about the challenges of visits to the hospital for oncology appointments and/or cancer treatment, and how to make this easier for yourself and your loved one.

What have been your experiences of oncology appointments and/or cancer treatment and care? What advice would you give to others for making this easier? If you would like to add your own experiences and thoughts to this discussion, please feel free to comment below.

 

[molliep]

A particular challenge for family members may be getting your loved one to frequent hospital appointments and/or treatment for their cancer, particularly if they have forgotten why they are going and become anxious. Below is some advice given by Macmillan Dementia Nurse, Lorraine Burgess, in our recent Q&A which may be helpful:

“Trying to get things organised the night before may help a little, putting clothes out etc for them. Reassure them and remind them what they are going for and why as they may forget and need prompting. They may be anxious about going somewhere outside their comfort zone. Tell them they will be safe and will be coming home after the appointment/treatment. Try to identify if there is a trigger that is making them anxious and work with that. For example, they may worry they won’t be able to find the toilet etc so will need reassurance around that. It may also be quite tiring for you, is there someone who would 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.”

What have you found helps from your own experience?

 

[molliep]

Another challenge raised by some carers of people with dementia and cancer was the difficulty of oncology staff not understanding about the needs of people with dementia, or how to talk to someone with dementia, meaning that family carers had the responsibility of understanding and explaining information given in oncology appointments to their loved one afterwards and answering their questions.

Below is a quote from an interview with Joanne* who cares for her grandma with mixed dementia and bowel cancer:

“The doctors didn’t necessarily speak directly to her, they spoke to me, as if she didn’t exist. So when we came out of the hospital I’d just be bombarded with question after question after question. There weren’t many staff that I ever came into contact with at the hospital that seemed to know how to communicate with her. It was easier to overlook her and speak directly to me, but the select few people that did make an effort with her, it seemed to really help. You know like being spoken to like a normal person again. And that was helpful to me afterwards as well because she asked less questions.”

Have you had a similar experience? In our recent Q&A, Macmillan Dementia Nurse Lorraine Burgess suggested the following advice:

“It can be difficult at times giving and retaining information when someone has dementia. It might be worth asking the oncologist to explain things in a simple way, not overloading with too much information. Explain that your relative needs information given more simplistically if need be. Would he/she drawing diagrams help? 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.”

 

[Duggies-girl]

Dad's oncologist and all his other doctors including his GP have all been very good. They always speak to dad first and explain what is or is not going to happen and why and then they ask dad if they can speak to me about his treatment or whatever else it may be and dad always says yes.

Ward staff are a different thing altogether.

 

[molliep]

It may be difficult to keep your loved one relaxed and calm throughout long waits and procedures or treatments for their cancer. Below is some of the advice that Lorraine gave in her Q&A for helping to reduce agitation in these circumstances:

“It may help if you try to plan appointments and/or treatment at a time which may be better for your relative. Perhaps getting them up too early, or too late in the day if tired, may not help. For example, they may need more time to get ready in the morning and rushing will not help with anxiety. If you mention this to the receptionist/therapists they should be able to help with this.”

“Would something like giving them an iPad to watch old comedy sketches/programmes e.g. Morecome and Wise or whatever they 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 them happy e.g. holidays. I guess the key is about activity really. Reassurance and reminding them of what is happening and the time may help particularly if no clock is in sight as it may seem like a long time if they are disoriented.”

“Perhaps aim to make the day a more positive experience than negative, e.g. “You have to go for your cancer treatment/appointment 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. It might be worth asking if they could have a familiar face to work with them consistently, e.g. the same radiotherapist.”

 

[molliep]

Dad's oncologist and all his other doctors including his GP have all been very good. They always speak to dad first and explain what is or is not going to happen and why and then they ask dad if they can speak to me about his treatment or whatever else it may be and dad always says yes.

Ward staff are a different thing altogether.

Hi @Duggies-girl,

Thank you for sharing your experience. So glad to hear that yours and your Dad's experience with his oncologist and doctors has been positive. I'm sorry to hear that your experience on the wards hasn't been so good. It can be so challenging, there needs to be greater understanding and awareness of dementia in these environments.