A guide for people with cancer and dementia

Cancer happens when something goes wrong with a cell and it becomes abnormal. The abnormal cell keeps dividing, making more and more abnormal cells.

These abnormal cells may form a lump (tumour), which may be cancer.

Sometimes, blood cells become abnormal and cancer develops in the blood.

Cancer has lots of different symptoms which depend on the type and stage.

If you have any symptoms of cancer, see your GP as soon as possible. In most cases, it will not be cancer, but it’s important to be checked.

The GP should ask questions about your symptoms and examine you. They may arrange tests like blood tests and scans.

If the GP thinks your symptoms could be caused by cancer, or your test results show that you may have cancer, they will refer you to a specialist doctor. This could be:

• a surgeon, who does operations, and/or
• an oncologist, who treats cancer with radiotherapy and chemotherapy

You might also be referred to a specialist nurse for support.

• surgery
• radiotherapy
• chemotherapy

Your doctors and nurses will talk to you about which cancer treatments will be best for you. Some might mean you need to spend time in hospital.

Most people have some side effects from cancer treatments, but your doctor or nurse will suggest things that can help. This might include medication.

In this case, your doctor may suggest a lower dose of treatment, or fewer treatments.

These will not cure your cancer but they might reduce your symptoms and stop the cancer developing as quickly.

If you decide this, you can still have treatment to help with symptoms such as pain.

To give consent, you must have ‘capacity’. This means you:

• understand the information you’re given
• are able to make an informed decision

Many people with dementia will lose the capacity to make informed decisions as their condition progresses.

If a decision needs to be made about your treatment and your doctor says you do not have capacity, they will make the decision in your best interests. They will usually involve your family members in the decision.

These are some of the ways you can record your wishes.

Advance Statement: you can write down your views so your family and healthcare professionals know your wishes and preferences for your treatment.

Lasting power of attorney: you can nominate one or more people to have the legal power to make decisions if you lack capacity.

Advance Decision to Refuse Treatment (ADRT): you can choose which medical treatments you do NOT wish to have in the future, like resuscitation. If you follow the correct process, your healthcare professionals have to respect your wishes by law.

Will: this ensures that your wishes are carried out after you pass away and that your money and possessions go to the people or causes that you care about.

• tiredness
• feeling or being sick
• memory and concentration problems, known as ‘chemo brain’ – this is often worse for people with dementia
• changes in appetite
• constipation/diarrhoea
• sleep problems

If you are having symptoms or side effects, speak to your GP, cancer specialist or specialist nurse for advice.

It’s helpful to keep a ‘symptom diary’ and note down your symptoms, what might have caused them, and what helps. You can show your diary to your health professional so they can give you advice.

• Take all the medicines that you are prescribed, following the instructions on the label
• Ask your pharmacist to put your medicines in a pill organiser (dosette box) which is marked with the times when you should take the medicines
• Make sure you go to all your health appointments
• If you feel unwell, make an appointment with your GP
• Ask your pharmacist or GP about having the flu jab
• Try to be physically active – just gently moving around more will help
• Avoid alcohol – it can make confusion worse, and it may be unsafe to drink alcohol with some medicines for cancer or dementia
• If you smoke, try to stop

Tips to try:

• keep to routines
• do one thing at a time
• make lists and tick off tasks as you finish them
• try to do things in a quiet place with no distractions
• break information into small chunks to help you remember it
• write down important things
• use a clock, calendar and/or phones for reminders

• your GP will help you with minor health issues, whether or not they are related to cancer or dementia. They can also refer you to specialists
• district nurses visit people at home and provide nursing care like changing dressings or giving treatments
• specialist nurses can give information and support with specific diseases, such as cancer. They do not usually provide hands-on nursing care
• Admiral Nurses are specialist nurses who work with families facing dementia in the community, in some hospitals and hospices, in virtual clinics and on the free Dementia Helpline
• social workers help organise practical and social support for you and your family carers
• home carers visit people at home to help with activities like washing and dressing. Some people receive funding for carers but others have to pay for the care themselves

Voluntary organisations and charities may also be able to support you, for example by lending you independent living equipment, offering transport to appointments, or arranging visits from volunteers to keep you company while your carer has a break.

Your district nurse, specialist nurse or GP can refer you to any of the professionals or voluntary organisations that we have mentioned.

• keeping you comfortable by controlling pain and symptoms
• offering emotional support to you, your family and friends

Palliative care is for people whose illnesses cannot be cured, but it’s not just for people who are at the end of their life – some people receive palliative care earlier on, while they are still having other treatments.

Palliative care teams are usually based in hospices or hospital palliative care units. They can also visit people at home.

If you have symptoms that are hard to control, you may have a short stay in a hospice or palliative care unit. Once your symptoms have improved, you can go home again.

Some people move into a hospice at the end of their life. The palliative care team will work to reduce any pain or distress and help you to pass away with dignity.

It is especially important to have support if you are told your cancer will not get better or that you are reaching the end of your life.

You might like to talk to family and friends about how you feel. If you find this difficult, you may prefer to talk to:

• your doctor or nurse
• your social worker
• a counsellor
• a local support group
• a telephone support line
• online communities for people with cancer and/or dementia

Your GP can refer you to a counsellor or support group, or see Sources of support below for details of organisations that can help.