Treating cancer in someone with dementia

Having dementia usually involves problems with memory, reasoning and managing daily living. The cancer treatment offered to the person you care for will depend on the type and stage of cancer they have. But it will also depend on the dementia symptoms the person has and how they cope with possible treatments.

The cancer team can talk to you both about the aims of the cancer treatment as well as the risks and benefits of different treatment options.

Treatment can aim to:

• completely remove the cancer or destroy all cancer cells
• slow down, or help to control, the growth of a cancer
• relieve symptoms
• give the best quality of life.

The cancer doctor will talk to you and the person you care for about the possible risks and benefits of different treatments. This can help with any decisions you both need to make about possible treatment.

Some people will be offered the standard treatment for their type of cancer. Standard treatment means the most effective treatment that is available now. Some treatments might mean the person you care for needs to spend time in hospital.

Most people have some side effects from cancer treatment. These are usually temporary and can be helped with medicines. But some people have longer-lasting side effects known as late effects.

For some people, treatment will cure or control the cancer. But sometimes treatment may not work as planned.

Sometimes, standard treatment may not be an option. This may be because the person is not well enough. Or they may have other health problems. Instead, they may have other treatments with:

• lower doses of medicine
• fewer treatment sessions.

Having dementia may mean that the person you care for is less able to understand and remember information about:

• their cancer diagnosis
• treatment options.

But is important that people with dementia and cancer feel supported in making their own decisions for as long as possible.

It can help to think about how cancer treatment may affect you and the person you care for. For example, some treatments may make the person very tired or more forgetful. Other treatments, such as radiotherapy, may mean daily hospital visits for several weeks. Or the person you care for may have to lie very still during treatment.

You and the person you care for may need more time to decide about treatment once you have all the information. Take the time you need to make the decision that is right for both of you.

Understanding more about treatment options can make it easier to make decisions. Our booklet Ask about your cancer treatment is for anyone who has been diagnosed with cancer. But it might also be helpful for carers, family members and friends.

For consent to be valid, the person giving consent must have capacity. This means that they must be able to:

• understand all the information given to them
• remember the information long enough to make a decision
• consider the benefits and risks of treatment
• make an informed decision
• communicate their decision by talking, using sign language or any other means.

The specialist doctor looking after the person with dementia and cancer may need to assess whether they have capacity.

If someone does not have capacity to make a decision, healthcare professionals can still give treatment if they believe it is in the person’s best interests. A best interests decision makes sure that:

• a person’s rights are respected
• the decision is the best one for them.

Healthcare professionals will try to understand the person’s wishes by getting advice from a partner, family member or friend. If the person does not have family or friends who can help, they must be supported by a special advocate called an Independent Mental Capacity Advocate (IMCA).

This is someone who can act for and support the person through making any decision, such as whether to have serious medical treatment.

Alzheimer’s Society has more information about capacity and making decisions for a person with dementia.

If you are the main carer for someone with cancer and dementia, you may need to go with them to their GP and hospital appointments. You may also need to visit the hospital during their treatment.

You may be able to get extra support. Talk to your cancer doctor, nurse or other members of the healthcare team about how they might be able to help you both:

• attend appointments
• cope with treatment
• manage any side effects.

The cancer doctor, nurses and any other healthcare professionals may know that the person you care for has dementia. It is sometimes recorded on their medical notes and referral letter. But this is not always the case, so it is important to check that staff know: 

• that the person you care for has dementia
• how well they can remember things and understand information
• how to talk to them and include them in discussions and decisions about their care
• their usual routines and preferences
• the level of support they may need.

You may like to support the person with dementia by asking for any difficult information to be explained in a different way. For example, you could ask for a diagram or short, simple, written information. You can take this away and look at it together whenever you need to. With the permission of the person with cancer and dementia, you could ask that copies of any hospital letters are also sent to you.

The healthcare team will want to communicate in ways that are helpful to the person with cancer and dementia. If you think it would help, you could ask the team to:

• give information in a quiet place without distractions
• meet with you both in the same room each time, if possible
  repeat things
• show you both any treatment areas or equipment before treatment starts
• identify a key worker who you can contact with any questions and who can get to know you both.

You can also ask a healthcare professional whether you can record the appointment. Most mobile phones can be used to make an audio recording or voice note. You do not have to record the whole conversation. You can ask the doctor or nurse to make a short summary of what was said at the end.

This means you can later review what was said in the appointment. Or you can pass on any information to family members, if the person with dementia is happy for you to do so.

The person with cancer and dementia will usually have many medical appointments. You may need to go with them if you can.

You can ask for things that may make attending appointments easier for you and the person you care for:

• A telephone or video consultation might be possible. This may reduce the number of times you have to travel to and from hospital.
• Treatment at another location or mobile unit close by can reduce travel distance.
• You may be able to reschedule an appointment time to one that suits the person with dementia. For example, an afternoon appointment may be better if they find mornings more difficult.
• Volunteer staff can meet the person with dementia and stay with them while you park the car.
• Hospital transport may be available. It will usually take longer, as more than 1 patient may be transported at a time. If you are supporting the person with dementia, ask to have an escort seat when you book.

Waiting at hospital for appointments can be difficult for some people with dementia. Some healthcare settings may provide quieter waiting areas with books and jigsaws to help pass the time. They may provide areas to get drinks and snacks, so that people do not have to find their way to the cafe or shop. You could also take items such as magazines to keep the person with dementia occupied while you wait.

The person you care for may have to stay in hospital, or go to hospital for treatment. It is important that the team looking after them knows about their everyday needs. This might include:

• how they normally communicate
• how they get around
• whether they need any special equipment, such as a hearing aid, walking stick or raised toilet seat
• whether they need help with daily activities such as washing, dressing or eating
• whether they have any special dietary needs
• how they behave when they are in pain.

The Alzheimer’s Society has a template form called 'This is me'. You can download a copy or order a free copy by post. The form is helpful for the person with dementia if they are in an unfamiliar place, such as a hospital ward. It can help if they are having problems communicating. The form can be filled out by people with dementia and their carers.

If the person you care for is going to hospital for a test or treatment, you can ask to be there. Many healthcare settings support John’s Campaign. This welcomes carers to stay with the person they care for outside of normal visiting hours. This may help the person with dementia to be less stressed or anxious. It also encourages carers to help the healthcare team give care. The specialist nurse, doctor or healthcare team member can talk to you more about this.

We have more information on talking to your healthcare team.