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A guide for people with cancer and dementia
A diagnosis of cancer can be frightening, and if you also have dementia you may face extra challenges. This guide explains what to expect and where to find support.
Cells are the tiny building blocks that make up our bodies. They help our bodies work properly, grow, heal and repair. We all have trillions of cells.
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. You can read more about possible symptoms at: nhs.uk/conditions/cancer/symptoms/
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.
There are lots of different types of cancer treatment. The main ones are:
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.
Some people may not be well enough for standard cancer treatment because of the type or stage of their cancer, or because they have other health problems.
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.
Some people choose not to have cancer treatment, or to stop if it’s not working.
If you decide this, you can still have treatment to help with symptoms such as pain.
Before you start treatment, your doctor will tell you what is involved and will usually ask you to sign a form saying that you consent to having the treatment.
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.
As dementia develops, it can become harder to communicate and make decisions – so you may want to think about your future care and treatment now, while you still can.
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.
For more information about planning for your future, please see Sources of support, below.
Cancer and cancer treatments may cause symptoms or side effects, such as:
- feeling or being sick
- memory and concentration problems, known as ‘chemo brain’ – this is often worse for people with dementia
- changes in appetite
- 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.
These tips will help you stay as healthy as possible while you’re living with cancer and dementia.
- 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
Both cancer and dementia can cause memory problems. This can be worrying and frustrating.
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
You might meet the following professionals when you are receiving support and/or treatment for cancer and dementia:
- 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 – see Sources of support, below, for information on how to contact an Admiral Nurse
- 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.
Palliative care is care that helps to improve your quality of life by:
- 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 common to feel shocked, frightened or angry about having cancer and dementia, so it’s important to talk to someone about your feelings.
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.
If you would like to speak to a dementia specialist Admiral Nurse about living with cancer and dementia, please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email email@example.com.
If you prefer, you can book a phone or video appointment with an Admiral Nurse – please visit dementiauk.org/get-support/closer-to-home/.
Dementia UK information that you might find helpful:
- Getting the most out of a remote consultation
- Getting the most out of GP and other health appointments
- Staying healthy
- Eating and drinking for a person with dementia
- Pain in dementia
- Managing anxiety and depression
- Lasting power of attorney
- Advance care planning
- Guide to NHS continuing healthcare (CHC) funding
- Capacity and decision-making
Other useful resources
- Macmillan Cancer Support
Helpline: 0808 808 0000
Online community: community.macmillan.org.uk
- Cancer Research UK
Helpline: 0800 800 4040
- Hospice UK: information on hospice and end of life care
- Marie Curie: care and support through terminal illness
Helpline: 0800 090 2309
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