A guide for people with cancer and dementia

Content below is reflective of the PDF leaflet.

What is cancer?

Cancer starts in cells in our body. Cells are tiny building blocks that make up different parts of our bodies.

Cancer starts when normal cells go wrong and the cell becomes abnormal. The abnormal cell keeps dividing, making more abnormal cells.

These abnormal cells may form a lump (tumour), which may be cancer. Sometimes blood cancers develop when blood cells become abnormal.

What is dementia?

Dementia is a word used to describe a set of symptoms.

There are several types of dementia, so each person affected may have different symptoms.

Dementia is caused by damage to the brain. This damage is mainly from Alzheimer’s disease or strokes (vascular dementia).

Symptoms will depend on what has caused the damage and which part of the brain is affected.

The most common symptoms are:

  • problems remembering things
  • problems thinking clearly
  • finding it hard to solve simple problems

Symptoms may come and go, while others get worse over time (progressive). As the dementia moves into a later stage, someone with dementia may need help with everyday activities.

Sometimes the stages of dementia overlap. This may mean they need help with one type of task or activity, but can manage others on their own.

Being diagnosed with cancer

This diagram shows who you are likely to meet when you are diagnosed with cancer.

  • Family doctor (GP) – You will see your GP about your symptoms. If they think your symptoms could be caused by cancer, they will refer you to a specialist doctor
  • Specialist doctor – A specialist doctor may be:
    • a surgeon, who does operations
    • an oncologist, who treats cancer with radiotherapy and chemotherapy
    • Some people may see both
  • Specialist nurse – Your specialist doctor can refer you to a specialist nurse. This may be:
    • a clinical nurse specialist, who is an expert in the type of cancer you have. They also give information and support
    • palliative care nurse, who can help with symptoms caused by cancer, such as pain
    • Some people may see both

Treatments for cancer

The main treatments for cancer are:

  • surgery
  • radiotherapy
  • chemotherapy
  • hormone therapy
  • targeted therapies.

The treatment you have will depend on:

  • the type of cancer you have
  • your general health
  • any other conditions you have, such as dementia.

Your specialist doctors and nurses can talk to you about which cancer treatments might help.

More information

We have booklets about different cancer treatments. Call Macmillan Cancer Support 0808 808 00 00 or visit macmillan.org.uk/treating

Your feelings about cancer and dementia

It is common to feel shocked, frightened or angry about your situation.

Talking about your feelings

It might help to talk to other people about how you feel. Some people find it hard to talk to close family and friends. If you would like to talk to someone else, your GP can refer you to a counsellor or support group.

Telephone support lines

  • You can contact the Macmillan Support Line on 0808 808 0000 to talk things through with one of our cancer support specialists
  • You could also call Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678. Or you can send an email to helpline@dementiauk.org

Online support

You may also find online communities useful. These are websites where people affected by cancer and dementia share their feelings and experiences.

  • Visit Macmillan’s Online Community at macmillan.org.uk/community. You can share your experiences of cancer, ask questions or just read through people’s experiences
  • Alzheimer’s Society also has an online community called Talking Point. It is for anyone affected by dementia. Visit it at forum.alzheimers.org.uk

Dementia and treatment for cancer

Having treatment for cancer

Some people with cancer and dementia will be offered treatment for the cancer. If you do have treatment, you may spend some time in hospital.

Side effects of cancer treatment

You will probably have some side effects from cancer treatments. Your doctor or nurse will give you medicine to help.

The side effects don’t usually last for a long time.

If you can’t have cancer treatment

Some people may not be well enough for treatment because of other health problems.

Your doctor may talk to you about treatments that give a lower dose or fewer number of treatments.

If you decide not to have cancer treatment

Some people may choose not to have cancer treatment. If you decide this, your doctor or nurse will still give you treatment to help with symptoms, such as pain.

If the cancer treatment stops working

Sometimes the treatment stops working. If this happens, your doctor or nurse can still give you treatment to help with symptoms.

Giving your consent

Before you start treatment, your doctor will give you information about the treatment and its side effects.

The doctor will usually ask you to sign a form saying that you give permission for the hospital staff to give you the treatment. This is called consent.

No one can give you medical treatment without your consent.

Capacity

To give consent to have treatment, you must:

  • be able to understand all the information
  • be able to make an informed decision.

This is called capacity.

When you have dementia, your capacity can be affected. Your doctor may have to consider whether you can make an informed decision about treatment. You can choose
someone to make decisions for you if your capacity might be affected in the future.

It is useful to think about how you would like to be cared for in the future. Your doctors and specialist nurse can keep a record of your preferences. This means that they
will know what to do if you are unable to make decisions in the future. We have more information on planning for the future on pages 20 to 21.

Planning for the future

Having dementia means there may come a time when you cannot communicate easily or make decisions for yourself. You may want to think about your future care and treatment.

Writing down your wishes

You can talk to your family or carers about how you would like to be cared for. Or you can write down your wishes and preferences. This means your family and healthcare professionals will know your wishes. These are called Advance Statements.

Power of Attorney

You may also want to nominate someone to make decisions for you in the future. You can give one or more people legal power to manage your affairs. This is called Power of Attorney.

Making a will

It is important to think about making a will. A will makes sure that people or issues that you care about are looked after. It also means that your wishes are carried out.

Read more about planning for your future here.

Managing symptoms and side effects

You may have symptoms or side effects from cancer or its treatment. Your doctor or nurse can give you medicine or advice to help with these.

Memory or concentration problems

Some people having treatment for cancer may have memory problems. They may also feel very tired. This is called ‘chemo brain’. Despite its name, it can happen to people having other types of cancer treatment.

People with dementia are more likely to have chemo brain. It is usually temporary and should get better with time.

Appetite changes and eating problems

People can have appetite changes or eating problems. Some people may struggle to eat enough. Others may eat more than usual and put on weight.

Eating and drinking well may help prevent problems like constipation and dehydration.

Tips to help you eat well:

  • eat plenty of high-fibre foods like fruit and vegetables
  • drink plenty of fluids during the day

If you are struggling to eat enough, talk to your doctor or nurse. They may refer you to a dietitian. Dietitians give advice on what to eat and whether nutritional supplements may help.

Constipation

People with cancer and dementia are more likely to become constipated.

Tips to help you avoid or improve constipation:

  • eat plenty of fruit, vegetables and high-fibre foods. This will help keep your bowels moving
  • drink about 2 litres (3 and a half pints) of fluids a day
  • this will help keep your bowels regular. It will also stop you from becoming dehydrated
  • keep active. Even some very gentle exercise at home can help with constipation

If constipation is a problem, tell your GP, nurse or carer. They may give you medicines to help.

Sleep problems

You may find it hard to sleep at night. Keeping physically active during the day may help you sleep at night. If you can, try to do some gentle exercise at home.

If you cannot sleep because you feel unwell or are in pain, talk to your GP or specialist nurse. They may be able to give you medicines to help.

If you are uncomfortable at night, your nurse may be able to get equipment that may help. For example, a pressure relieving mattress.

Using a symptom diary

You may find it useful to note down your symptoms using the symptom diary opposite. You can write down any symptoms you have and what helps. You may want to show your notes to your doctor so they can help you.

Looking after yourself

There are some things that you can do to help yourself. This may help you feel more in control of your situation.

Our Admiral Nurse Dementia Helpline can give you more information about keeping well when you have dementia and cancer. You can call them on 0800 888 6678.

Look after your health

  • take medicines that your doctor or nurse gives you. Check the prescription label for how to take them
  • ask your pharmacist to put your medicines in a pill organiser (dosette box). This is marked with the times you should take the medicines
  • have regular check-ups with your GP or practice nurse
  • if you feel unwell, don’t wait for symptoms to go away. Make an appointment with your GP
  • keep up to date with hearing, eye and dental checks
  • ask your pharmacist or GP about the flu jab.

Keep active

Being physically active can help improve a poor appetite and constipation. It may also help you sleep better.

Tips for keeping physically active:

  • Try to reduce the amount of time you spend sitting or lying down. Just moving around the house and doing simple day-to-day things will help.
  • You may be able to do gentle stretching exercises.
  • Start slowly and gradually build up the amount of physical activity you do.
  • Check with your GP whether there are any physical activities that you should not do.

Alcohol

If you have confusion, alcohol can make it worse. It is important to limit how much alcohol you drink.

If you are taking regular medicines for cancer or dementia, check with your GP or pharmacist whether it is safe to have alcohol.

Smoking

If you smoke, you should try to stop. Smoking can increase your risk of bone thinning, some cancers and heart disease.

Memory problems

Memory problems can be worrying and frustrating.

Tips that you may find helpful:

  • keep to routines
  • only do one thing at a time
  • make lists and tick off completed tasks
  • 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

Aids for memory problems

You might be able to get aids to help you to stay independent and improve safety in your home.

These may be things like:

  • clocks, calendars or phones that have reminders, alerts or numbers set into them
  • safety devices to switch off gas supplies or taps if they are left on

Who can help?

People who may be able to support you include:

  • family, friends and neighbours
  • doctors, nurses and social workers

Before you talk to someone, it can help to prepare some questions you might like to ask. You could take a family member or friend with you to appointments to help you
remember what was said.

The type and amount of support you get will depend on where you live.

Professionals who can help

  • GP (family doctor) – This doctor looks after people who are unwell and being looked after at home. They can refer you to other services, such as nurses and social workers
  • District nurse – District nurses work closely with GPs. If needed, they make regular visits to people at home. They can provide any nursing care you might need at home
  • Specialist nurses – Specialist nurses can give information and support about certain diseases. They do not usually provide nursing care
  • Admiral Nurses -Admiral Nurses are dementia specialist nurses. They help families face dementia with more confidence and less fear. To find out if there is an Admiral Nurse in your area:
  • Social workers – A social worker helps decide what practical and social help you or your carer need. Your GP or a nurse can refer you to a social worker

Help at home

Carers can come to your home to help. The type of help they give will vary depending on where you live.

Voluntary organisations and charities

Voluntary organisations and charities offer help, such as:

  • giving information
  • loans of equipment
  • grants
  • transport
  • volunteers who can be with you, to give your carer a break

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

What is palliative care?

Palliative care is treatment to help manage symptoms and improve quality of life. Sometimes cancer treatments like radiotherapy are used in palliative care. This can
help with symptoms, such as pain.

Palliative care teams include specialist nurses and doctors. These teams specialise in:

  • controlling pain and symptoms
  • offering emotional support

Having palliative care

Community palliative care teams are sometimes based in hospices. But they can also visit people who are being cared for at home.

Some people may have help from a palliative care team from when they are first diagnosed with cancer. Others may meet the team later.

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

End of life

Many people with cancer get better, but others will not. Hearing that you may be nearing the end of your life can be very difficult.

Your feelings

You may have strong emotions that are difficult to cope with. You may need some time on your own or with someone close who you can talk to about your feelings.

Getting support

Some people find it easier to talk to someone outside their family. If you think this would be helpful, you can talk to your doctor, specialist nurse or social worker.

You may also find it helpful to speak to one of our Admiral Nurses. Call them on 0800 888 6678 or email helpline@dementiauk.org

Planning for the future

Although your future may be uncertain, you can still make the most of times when you feel well. There may be important things you want to think about. For example:

  • where you want to be cared for
  • making a will
  • choosing someone to make decisions for you if you are unable to

A guide for people with cancer and dementia

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