Cancer and dementia: A guide for carers

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The main risk factor for both cancer and dementia is age. Most people with dementia are over 65 years old. About half of people diagnosed with cancer are over 70 years old.

Each year, about 352,000 people in the UK are diagnosed with cancer and about 850,000 people are living with dementia. Many people with dementia also have several other health conditions, including cancer.

Many people with dementia are cared for at home by a family member or friend. In the UK, there are about 670,000 carers of people with dementia.

What is cancer?

Cancer starts in cells in our body. Cells are tiny building blocks that make up the organs and tissues in our bodies. They divide to make new cells in a controlled way. This is how our bodies grow, heal and repair.

Cells receive signals from the body telling them when to divide and grow, and when to stop growing. When a cell is no longer needed or can’t be repaired, it gets a signal to stop working and dies.

Cancer develops when the normal workings of a cell go wrong and the cell becomes abnormal. The abnormal cell keeps dividing, making more and more abnormal cells.

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

Doctors may remove a small sample of tissue or cells. This is called a biopsy. The doctor then examines the sample under a microscope to look for cancer cells.

Treatments for cancer

The main treatments for cancer are surgery, radiotherapy, chemotherapy, hormone therapy and targeted therapies.

The treatment depends on:

  • where in the body the cancer started
  • the size of the cancer
  • whether the cancer has spread to other parts of the body
  • the person’s general health
  • any other conditions they have, such as dementia.

The doctor will consider all these things when planning treatment. They can affect how well certain cancer treatments work or whether someone is well enough to have them.

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.

Symptoms can include:

  • problems thinking clearly
  • finding it hard to solve simple problems
  • not remembering or using the right words
  • being confused or disoriented
  • changes to behaviour or personality.

Dementia is usually thought of in three different stages – early, middle and late. These stages are a guide to how dementia might develop over time. But dementia is different for each person
and the stage will depend on different factors, including:

  • the type of dementia
  • the person’s general health
  • the support available
  • whether the person is having treatment for dementia.

Some people may not notice symptoms at first. Or 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.

Some types of behaviour can be challenging and distressing.

Treatments for dementia

Currently, there are no treatments to prevent or cure dementia. But researchers are looking at medical treatments and vaccines.

Some treatments may help to improve the symptoms, but these are mostly only for people with Alzheimer’s disease. The treatments can sometimes slow dementia for a while.

Drug treatments for dementia have some side effects that mean they are not suitable for everyone. Doctors and nurses who specialise in dementia can tell you more about which treatments may be suitable for the person you care for.

There are two main types of treatment for dementia:

  • Non-drug treatments – these may include talking therapies, counselling and support at home.
  • Drug treatments – these include drugs that can help for a while with memory problems, and drugs that can help with hallucinations or treat depression and anxiety.

People who have dementia caused by strokes may be given drug treatments to treat the cause of the strokes. This might include drugs for high blood pressure, heart problems or high cholesterol. They may also be given advice about lifestyle changes that may help, such as stopping smoking.

Talk to the dementia doctor or nurse to find out more about treatment for dementia and what might help.

Treating cancer in someone with dementia

The cancer treatment offered to the person you are caring for will depend on their individual situation, but also on the stage ofvthe dementia. Doctors and nurses who specialise in
cancer can talk to you about which cancer treatments might help in their situation.

Benefits and disadvantages of treatment

Some people with cancer and dementia will be offered the standard treatment for the cancer. They may have to spend time in hospital. The person you care for is likely to have side effects from cancer treatments. These are usually temporary and can be controlled with medicines.

For some people, treatment will cure the cancer. Other people may not respond to the treatment. This means that some people may have the side effects of treatment without any of the benefits.

Some people may not be well enough for standard treatment. This may be because of other health problems. Other people may choose not to have the standard treatment. Instead, they may
have other treatments that give a lower dose of treatment or fewer treatments. They will usually spend less time in hospital and have fewer side effects. These types of treatments are given to control the cancer but they won’t get rid of it completely.

Sometimes the treatment stops working. If this happens, the person can still be given supportive or palliative treatment to help control symptoms. If someone is having
problems with symptoms or side effects, they can have supportive treatments for any stage of cancer.

Talk to the person you care for about whether they would like to have treatment and what they might prefer. You could go with them to talk to their doctor about treatment options. You may also be able to talk about the possible benefits and side effects of treatment with a nurse.

Giving consent

Before someone has any treatment, their doctor will explain the aims of the treatment. They will usually ask them to sign a form saying that they give permission (consent) for the hospital staff to
give treatment. No medical treatment can be given without the person’s consent.

Before they are asked to sign a consent form, they should be given full information about:

  • the type and extent of the treatment
  • its advantages and disadvantages
  • any significant risks or side effects
  • any other treatments that may be available.

Capacity

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
  • be able to make an informed decision.

A person with dementia must be able to remember the information for long enough to make an informed decision.

If someone has dementia, their capacity can be affected. The specialist doctor looking after them may need to check whether they can make an informed decision about treatment.

If someone is not able to make a decision, health professionals can still give treatment if they believe it is in the person’s best interests. But they must try to get advice about the person’s
wishes from partners, family or friends.

It can help the person you care for to think ahead, before theirability to make decisions is affected. They can write down how they would like to be cared for. It is helpful to give clear instructions about any treatments that they would or would not want to have.

If you are the carer of someone with cancer and dementia, you may have to help them decide about treatment or make decisions for them. It can be difficult to know what to do. Talk to the dementia specialist doctor or nurse. They will be able to give you some advice about the best way to do this.

Appointments and hospital visits

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

During appointments, you can help by remembering and writing down information. You can also help the person you care for to describe any symptoms or problems they are having. If they have
any questions before the appointment, you can prompt them and help them to remember what they wanted to ask.

You can also ask the health professional to communicate in ways that are helpful. It might help if the health professional does the following:

  • faces the person you care for at the same level and makes eye contact when talking
  • keeps information simple, avoids medical words and repeats things if necessary
  • breaks information down into small chunks that are easy to understand
  • gives information in a quiet place without distractions.

If the person you are caring for is admitted to hospital, it is important that everyone involved in their care knows about their needs. It also helps if people know what the current care plan is or if anything has changed.

Making choices

If someone has dementia, it is likely that their ability to make decisions will be affected in the future. There may come a time when they will not be able to make
certain decisions or communicate easily. If they think ahead about their future care and treatment, it can help you and any other carers, such as health professionals.

There are different ways the person you care for can plan ahead. This is sometimes known as advance care planning and includes:

  • their wishes and preferences for care
  • Advance Statements
  • Advance Decisions (or Directive) to Refuse Treatment
  • Lasting Power of Attorney.

Wishes for care and Advance Statements

The person you care for can talk to you or someone else they trust about how they would like to be cared for. They can also write down wishes and preferences for family or health and social care professionals. These are called Advance Statements.

Advance Statements of wishes are not legally binding. But they must be taken into consideration when healthcare professionals make decisions about the person’s care.

There are different documents that can be used to record wishes and preferences. You can ask the person’s doctor or nurse which documents are used in their area.

Advance Decisions to Refuse Treatment and Advance Directives

An Advance Decision to Refuse Treatment or Advance Directive is sometimes known as an Advance Decision. It is a decision about treatments the person you are caring for doesn’t want to have. For example, they may decide that if their breathing stops, they don’t want people to try to bring them back to life (resuscitate them). Or, that if they are very ill and have an infection, they don’t want to be given antibiotics.

If the person you care for refuses a treatment, they will still receive good care and have medicines to help manage any symptoms they may have.

Lasting Power of Attorney

The person you care for can give one or more other people the legal power to manage their affairs. This is called Power of Attorney. These decisions may be about property or finances,
or health and welfare.

Although someone can create their own Power of Attorney (PoA), it can help to speak to a solicitor. They will make sure that your PoA meets all the requirements of the law. If you don’t have a solicitor, you can find one by contacting The Law Society Power of Attorney can vary depending on what part of the UK you live in.

Care options

It can be helpful for the person you care for to think ahead and make some decisions about where they will be cared for in the future. They may be able to stay at home with help and support. Or they can be cared for in a hospice or nursing home.

Where they will be cared for depends on:

  • what they want
  • what help they have from family and friends
  • what services are available in the area they live in
  • their medical condition.

Most people prefer to stay at home, as long as they know they will have good quality care. Even if they choose not to be cared for at home, they can still be surrounded by people and things that are important to them.

Short-term care

If the person you care for decides to be looked after at home, they can still have some types of short-term care. For example, they may be able to go to a day centre during the day if you have
to work. Hospices and residential homes may also offer short stays for a few days or weeks. This might be to have specialised care that helps control symptoms or to give you a break from caring.

Their GP, district nurse or specialist palliative nurse may be able to arrange for them to go into care for a short while. This might be in a:

  • hospice
  • hospital
  • residential home
  • care home with nursing (nursing home).

Care in residential homes or nursing homes

Residential and nursing homes offer short-term or long-term accommodation and care. Residential care homes or care homes with nursing provide different levels of care. A social worker or member of the healthcare team can explain the difference.

They can give you more information about local care homes and the type of care provided. They may also help you think about how to pay for care home arrangements and how to arrange this type of care. Organising care homes can take some time.

Lists of local care homes are available from your local social services department. The standard of care provided by care homes and care agencies is monitored across the UK by care regulators.
Before choosing a care home or agency, you may want to check its standard of care with one of these organisations. You can also ask your healthcare worker or social worker to give you this information.

Hospice care

If the person you care for becomes more unwell, they may want to be looked after in a hospice or in a palliative care unit of the local hospital.

Their GP, district nurse, specialist palliative care nurse or social worker may suggest a short stay in a hospice or hospital. This may be because they have symptoms that would be easier to control
with specialist care. They may be given treatments until symptoms improve and then go back home.

Hospices are generally smaller and quieter than hospitals and work at a much gentler pace. Many have sitting rooms and space for family to stay overnight. Sometimes there is a waiting list to go into a hospice but this is usually short. If you are not sure about the idea of hospice care, you can ask to visit before making a decision.

Cancer and Dementia: A Guide For Carers

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