Thinking and memory changes

If you have mild memory or thinking problems with Parkinson’s, you may have:

• problems planning or doing a few things at the same time (multitasking). Or moving quickly from one task to another
• problems with attention and concentration. You might find it difficult to do everyday activities such as reading a newspaper article from start to finish
• difficulty using a computer or reading maps
• slowness of thoughts. You might find it harder to make decisions or respond to questions

Generally, these symptoms may not affect your daily life too much, but they might make you feel less organised than you used to be. Or you may get confused, particularly if you’re feeling stressed.

It’s important to remember that Parkinson’s affects everyone differently. Not everyone will experience these symptoms or have the same combination of symptoms.

If you’re experiencing these symptoms, your Parkinson's specialist may diagnose you with Parkinson’s with mild cognitive impairment.

If you are worried about or are experiencing these symptoms, speak to your specialist doctor or Parkinson's nurse, as there may be positive steps you can take to improve them.

For some people, their symptoms may get worse over time. But this doesn’t happen to everyone.

If you have thinking and memory problems that get worse and start to affect everyday life, including things like cooking, cleaning and dressing, then it’s important to speak to your specialist.

They will be able to talk to you about useful things that you can do which could improve your symptoms.

See the section 'What happens when I speak to a specialist'.

If your thinking and memory problems are serious enough to affect your ability to carry out everyday tasks, your Parkinson's specialist may diagnose you with Parkinson’s dementia.

Not everyone who experiences thinking and memory changes goes on to develop Parkinson’s dementia.

Parkinson’s dementia is very similar to another type of dementia, called dementia with Lewy bodies, and they share the same symptoms. These are the two main types of dementia that can affect people with Parkinson’s.

People with Parkinson’s dementia and dementia with Lewy bodies may experience:

• difficulty with visual and practical tasks. For example, reading clocks or putting on trousers correctly
• slowness in thinking, difficulty finding words, or trouble concentrating, which can affect how you
talk or communicate with others
• changes in thinking during the day – sometimes being alert but other times being confused
• changes in sleeping patterns. For example, taking more naps during the day despite getting a normal amount of sleep, or nodding off during meal times
• visual hallucinations (seeing something that is not there), and mistaking objects for other things. For example, a pile of clothes might look like a dog
• being less engaged, or finding you do not have as much interest in the activities you used to enjoy (apathy)
• anxiety, depression or feeling agitated

You may find that symptoms fluctuate from hour to hour, and day to day.

There are many different types of dementia. Parkinson’s dementia and dementia with Lewy bodies are the two types of dementia that are most likely to affect people living with Parkinson’s.

The main difference is the timing of when you start experiencing symptoms. If you’ve had movement symptoms (such as tremor or stiffness) for at least one year before symptoms of dementia, specialists will often give a diagnosis of Parkinson's dementia.

If you get dementia symptoms before or at the same time as movement symptoms, specialists will usually give a diagnosis of dementia with Lewy bodies.

These two conditions are sometimes grouped under an umbrella term: Lewy body dementia, which can be useful as the two conditions have similar symptoms. The term Lewy body dementia may also be used where it is not clear exactly when the thinking and memory problems started.

The causes and ways of managing symptoms in Parkinson’s dementia and dementia with Lewy bodies are the same.

Parkinson’s dementia is different from Alzheimer’s disease, although some of the symptoms overlap.

People with Alzheimer’s experience memory problems, which means they may repeat questions and conversations. This is less common in Parkinson’s dementia. People with Alzheimer’s may also have trouble recognising their family and loved ones, which does not usually happen in Parkinson’s dementia.

Parkinson’s leads to physical changes in the brain. As Parkinson’s progresses, more brain areas are affected.

One of the reasons for this is that there are lower levels of a brain chemical called acetylcholine, as well as dopamine. Another cause is that proteins can build-up in the brain and affect different brain areas.

There is still a lot of research happening to understand the brain changes that cause thinking and memory symptoms in Parkinson’s.

It is not clear why some people are affected by these changes and others aren’t.

Research shows that different things might increase the risk of developing thinking and memory changes if you have Parkinson’s.

These are called risk factors, and can include:

• Age. People who are older when they are diagnosed with Parkinson’s are more likely to develop these changes.
• Genetics. Researchers have found that some genes are linked with a higher risk of developing thinking and memory problems. One example is a gene called GBA.
• Sleep changes. Some types of sleep changes are linked with higher risk of developing thinking and memory symptoms. These include moving or shouting out during sleep.
• Depression. Whilst depression is common in Parkinson's, research has shown that it is also linked with a higher risk of developing thinking and memory problems.
• Heart disease and stroke. These conditions can have an effect on the structure of the brain, which  can affect thinking and memory. For this reason, lowering the risk of heart disease and stroke is also important in Parkinson’s.

These risk factors are highly variable between people.

This means that if you have one or more of these risk factors, it doesn’t mean that you will definitely develop thinking and memory problems. A significant proportion of people living with Parkinson’s will never develop serious thinking and memory symptoms.

Other things can also affect your focus and concentration. It's important to know about these, as there are things you can do to manage them.

For example:

• Anxiety and depression. These symptoms can have a big impact on your ability to think, remember and process information properly. They can also affect your attention span and concentration. It’s important to talk to your specialist if you’re experiencing these symptoms so that you can get treatment.
• Poor quality sleep. If you’re feeling tired or run down, or you're not sleeping well, this can affect your thinking, concentration and memory. Talk to your specialist if you are having trouble with your sleep, as they may be able to recommend things that may help.
• Hearing or visual loss. This will make it harder to respond to people and surroundings. Improving these through hearing aids, or treating visual loss, can improve thinking and memory symptoms.
• Being unwell for other reasons. Other issues like being constipated or having an infection can affect your thinking and memory and ability to concentrate. If you experience a sudden change in your thinking or memory, speak to your GP or Parkinson’s nurse to see if they can rule these things out.

See the section 'Can I get involved in research?' to find out about research into thinking and memory changes.

It might be helpful to take some questions with you to your appointment. For example:

• What changes can I expect?
• What can I do to slow the progression of thinking and memory changes?
• What help can I get?
• What help is available for my partner or family?
• What things do I need to think about to plan ahead?

• Notes of the changes you’ve noticed
• A list of your current medications
• Your questions
• Someone who knows you well, if possible

Being physically active is important for people with Parkinson’s.

It’s especially important for managing thinking and memory symptoms.

Regular, moderate to vigorous physical activity may help improve your cognitive ability and help your brain to work more efficiently. It can also reduce the risk of anxiety and depression.

Physical benefits of being active include better muscle and bone strength, better balance and a reduced risk of falls. It can also reduce the risk of developing other health problems such as heart disease and stroke. These can affect thinking and memory, so reducing the risk of these is important.

What should I aim for?

Physical activity can include everyday things you may already be doing like walking, gardening, and climbing the stairs. You should try to find activities that you enjoy to raise your heart rate and also some activities that focus on flexibility, balance, strength, and multitasking.

Ideally you should aim for 2.5 hours of physical activity a week. This is around half an hour, five days a week.

Scheduling activity each day at a specific time can create a habit, and make it easier to maintain. It can also be helpful and enjoyable to exercise with other people.

The most important thing is choosing something that you find enjoyable and achievable.

It can be tricky to know how to get started, or what you should be doing. Our guide Being active with Parkinson’s has lots of suggestions and tips on where to start, and includes advice from experts and other members of the Parkinson’s community. Find out more about physical activity and Parkinson's. 

While there is no specific diet that is recommended for Parkinson's, having a healthy and balanced diet will improve your overall wellbeing and may even help your thinking and memory.

It’s important to continue to have a fulfilling and enjoyable life. However, your specialist may speak to you about moderating how much alcohol you drink, and cutting down or stopping smoking.

You can ask your GP whether any changes to your lifestyle might help you. For example, making sure your blood pressure is well controlled could help prevent thinking and memory problems getting worse in the future.

If you have hearing or visual loss, improving these can have a positive effect on your thinking and memory.

This is because anything that makes it harder to follow what is going on around you, will affect how well you can respond to things.

Make an appointment to get a hearing test if you have noticed problems with your hearing. Or if you have visual symptoms, get advice from your optician or eye doctor.

Not sleeping well will affect how clearly you can think during the day.

How often you need to get up at night to use the toilet can affect your sleep. If this is a problem, try to avoid tea, coffee, alcohol, or fruit juice in the evening, as these can make you need the toilet more.

If this does not help, you can speak to your specialist about medications that can help with managing how often you need to use the toilet.

If you enjoy doing puzzles, games and crosswords, these can keep your brain stimulated. Other examples of activities to challenge your brain are reading, learning and socialising (see below).

Social activities and maintaining social connections can keep your brain engaged and could help your thinking and memory symptoms.

This might be something like going to social clubs, continuing to do hobbies and things you enjoy, and staying in touch with friends and family.

Some people also find religion, faith and spirituality, as well as staying connected to their community can be helpful.

Social activities are really important to manage and even improve symptoms.

Find local Parkinson's groups and classes in your area. 

If you find that thinking and memory problems are starting to affect your daily life, there are tips and techniques that might help.

Visual prompts

• Having calendars, clocks, noticeboards and notices around your home may help jog your memory.
• Routine and being organised.
• Having a clear daily routine can be helpful. Being as organised as possible can help you stay focused and reduce stress.
• You might find it helps to keep a list of things to do. You can see what you have achieved as you tick off each task.
• Remember that sometimes it helps if you slow down and tackle one thing at a time, rather than trying to do multiple things at once.
• Prioritise the things you have to do and the things you want to do, and choose which things you can leave for later.
• Giving your undivided attention to whatever you’re doing can help you avoid mistakes. This can reduce stress and help you feel in control.

Thinking and memory aids

• A basket or box to keep things like your keys, wallet and glasses in one place.
• Drug dispensers and pill timers can be a useful reminder to take your medication, as it’s important to take it at the times advised by your specialist or Parkinson’s nurse.
• Keep a diary of your symptoms. This can help you explain any problems when you see your healthcare professionals.

Therapies and support services

There are many types of therapies and other support services that may be able to improve or help manage some of your symptoms. These include:

• physiotherapy
• speech and language therapy
• occupational therapy
• support from specialist mental health services, such as neuropsychology

Your specialist and Parkinson's nurse can talk to you about what type of treatment is best for you.

Rivastigmine (also called Exelon and Prometax)

Rivastigmine belongs to a group of drugs called Cholinesterase Inhibitors. They stop the breakdown of acetylcholine in the brain. Acetylcholine allows nerve cells to communicate with each other. Rivastigmine increases the levels of acetylcholine in the brain, and boosts thinking and memory.

Rivastigmine comes in two forms – a capsule, usually taken twice a day, and a patch that is put on once a day. For both of these, the dose is usually increased gradually over time by your specialist.

Rivastigmine can sometimes cause side effects. The most common side effects are stomach problems such as feeling sick, or diarrhoea. Occasionally, it can also cause trembling, slight worsening of Parkinson’s symptoms, or nightmares.

It can slow the heart rate, so your pulse will be checked before starting, and some people may have an ECG (heart tracing).

Donepezil (also called Aricept and Adlarity)

Donepezil is also a Cholinesterase Inhibitor, like Rivastigmine, and works in a very similar way to boost thinking and memory. It is taken as a tablet, usually once a day.

Donepezil has the same side effects as Rivastigmine, with some people feeling sick, or experiencing diarrhoea. It can make movement symptoms of Parkinson’s worse. Similar to Rivastigmine, it can also slow the heart rate, so a pulse check or ECG may be needed before starting.

Other medications that are sometimes used include:

Galantamine (also called Reminyl and Razadyne)

Galantamine also acts by increasing the amount of acetylcholine in the brain. It is taken as a capsule and causes similar side effects to Rivastigmine and Donepezil.

Memantine (also called Evixa, Nemdatine and Valios)

Memantine acts on a group of receptors in the brain called “NMDA receptors”. These help communicate nerve signals in the brain that help with learning and memory.

Memantine is usually taken as a tablet, once a day, and the dose is gradually increased over a few weeks. The most common side effect of memantine is sleepiness. It can also cause headaches and constipation.

If you have thinking and memory problems, or support someone who does, it’s important to try to plan for the future.

If your thinking and memory problems get worse, then having plans set in place will make things like managing legal documents, money and your health easier.

Planning ahead can also reduce stress. These are some things to consider, when you feel ready to.

Power of Attorney

Consider setting up a power of attorney. This means that you nominate one or more people that you trust to make decisions on your behalf about legal and health matters.

This gives you more control and helps you to decide in advance what happens if you have an accident or an illness and cannot make your own decisions.

Driving

If you’ve been diagnosed with Parkinson’s dementia and still drive, you have to tell the Driver and Vehicle Licensing Agency (DVLA), or Driver & Vehicle Agency (DVA) in Northern Ireland, about your diagnosis. You must also tell your car insurer.

Insurance

If you’ve been diagnosed with Parkinson’s dementia, you may also need to tell your travel or life insurance company about your diagnosis.

Benefits and financial support

Feeling in control of your finances is incredibly important for your mental and physical health. Find out more about benefits, grants, loans and other support. 

Advanced care planning

Advanced care planning is a way to support people to ensure they have the care they want at any stage. This includes at the end of life.

By thinking about the future and talking about what you want, you can be more in control about what lies ahead.

You can also make your wishes known about your care using a framework called ReSPECT, which stands for Recommended Summary Plan for Emergency Care and Treatment. The ReSPECT process creates a personalised recommendation for your clinical care in emergency situations where you are not able to make decisions or express your wishes.

You can learn more about ReSPECT on the Resus website.  

Our helpline can offer practical advice on care planning. Contact our helpline for free on 0808 800 0303 to speak to an adviser.

You might be a family member, a partner, or a friend, providing care and support to someone with Parkinson's who has thinking and memory problems.

• If you regularly provide support or care for someone with Parkinson’s dementia, you have a right to a ‘carer’s assessment’. This is done through your local authority. After your assessment, if your local authority agrees you have needs, they will arrange services to help you. To find out more, contact your local authority or speak to your GP.
• You may also be able to get financial support. This includes benefits like Carer’s Allowance and help with council tax bills.
• There are many local support groups for carers of people with Parkinson’s. 

It can be daunting explaining Parkinson’s to other people. This may be especially true if you’re experiencing thinking and memory changes. You may find it difficult or upsetting, or not know what to say.

Other people might include friends, wider family members or your manager at work.

There are some benefits about talking to others about these symptoms. It can:

• make you feel more able to cope with any worries you have 
• help extend your support network
• strengthen and build new relationships
• help you to feel more in control and empowered
• help to raise awareness and educate others

These are some tips on how to approach conversations:

• Be prepared. You may want to make a list of things you would like to say during the conversation or try to anticipate questions that other people are likely to ask.
• You could also have information leaflets or booklets ready (like this one) to provide others with more information during conversations.
• A comfortable and relaxed environment is best, where you won’t be distracted. Some people may also find it easier to talk when you are out walking or doing something where you are beside each other.
• During the conversation, try not to rush. Remember that you can take time to think about your responses and take a break if you need to.
• It’s important to think about reactions during the conversation. People that you talk to may react in unexpected ways and some may not know how to react. Others may find the conversations upsetting. It's important to acknowledge this and take a break if needed.