3.10 Parkinson’s dementia

So far in this section we have looked at a variety of cognitive problems in Parkinson’s, of which dementia is one. This is a complex symptom that we will explore in detail, including Parkinson’s dementia and dementia with Lewy bodies, their symptoms, causes and treatment, and information to support management of these symptoms.

Dementia symptoms are caused by a significant loss of brain function. There are different forms of the condition and each person will experience dementia in their own way.

Some people will develop dementia after living with Parkinson’s for some time. When someone has Parkinson’s motor symptoms for at least a year before experiencing dementia, this is known as Parkinson’s dementia.

Symptoms of Parkinson’s dementia

Symptoms can include forgetfulness, slow thought processes and difficulty concentrating. This can make communication hard, and finding words and names or following conversations can be a problem.

Some people find it increasingly difficult to make decisions, plan activities and solve problems. This can make everyday activities such as dressing, cooking or cleaning increasingly hard.

People can also experience changes in their appetite, energy levels and sleeping patterns. They may find themselves sleeping more during the day, or becoming less engaged with what’s going on around them. A lack of motivation or interest in things they previously enjoyed can also be a symptom.

Problems such as anxiety, depression or irritability can become an issue because of dementia. Some people may also find it difficult to control their emotions and experience sudden outbursts of anger or distress, although these problems are not common.

Some people with Parkinson’s dementia might also develop visual hallucinations and delusions.

Some of the symptoms of Parkinson’s dementia are similar to those caused by other health issues. For example, mental health issues such as depression can mimic dementia.

‘I moved in with Mummy in 2019. There was a concern for me. Mummy was burning food. There were signs that she needed more help.’

Juliet, daughter of someone who lived with Parkinson’s (died October 2021)

Side effects from medication or medical problems, such as an infection, may be the cause of symptoms similar to dementia, such as memory problems. Things like constipation and dehydration can also cause confusion. Symptoms caused by medication or infections can be treated effectively.

What are the causes?

We still don’t fully understand why some people with Parkinson’s get dementia and it isn’t entirely possible to predict who it will affect. But there are factors that put someone more at risk.

A person is more likely to develop dementia if they’re 65 or over, and their risk increases as they get older. A family history of dementia also increases risk.

They’re at a greater risk of Parkinson's dementia if they were diagnosed with Parkinson’s in later life, or have been living with the condition for many years.

If someone with Parkinson’s is experiencing hallucinations or delusions early on in their condition, this also suggests an increased risk of developing dementia.

If someone has been diagnosed with Parkinson’s later in life, has had Parkinson’s for a long period of time or has a family member with dementia, this can increase their risk of developing dementia.

Treating dementia

As with Parkinson’s, the symptoms of dementia can’t be cured, but they can be treated. This may be done by reviewing a person’s current medication and using dementia medications.

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Medication can be helpful, but it’s also useful for people to get support from a wide range of healthcare professionals. Physiotherapists, occupational therapists, dietitians and speech and language therapists can help the person with dementia and those supporting them. You may be one of these healthcare professionals or you may be able to suggest a referral to one.

Helping with communication

The following information has been provided by the Alzheimer’s Society. You can find this and more helpful advice on the Alzheimer’s Society website [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] .

Difficulties with communication can be upsetting and frustrating for the person with dementia and for those around them. But there are some basic things you can do to make life a little bit easier:

  • Listen carefully to what a person with dementia says.
  • Make sure you have their full attention before you speak.
  • Pay attention to body language.
  • Speak clearly.
  • Consider whether any other factors are affecting their communication.
  • Use physical contact to reassure the person.
  • Show respect and keep in mind they have the same feelings and needs as they had before developing dementia.

Listening skills

  • When communicating with a person with dementia, try to listen carefully to what they are saying, and give them plenty of encouragement.
  • If a person with dementia has difficulty finding the right word or finishing a sentence, ask them to explain in a different way. Listen out for clues.
  • If you find their speech hard to understand, use what you know about them to interpret what they might be trying to say. But always check back with them to see if you are right − it’s infuriating to have your sentence finished incorrectly by someone else.
  • If someone is feeling sad, let them express their feelings without trying to ‘jolly them along’. Sometimes the best thing to do is to just listen, and show that you care.

Attracting the person’s attention

  • Try to catch and hold their attention before you start to communicate.
  • Make sure they can see you clearly.
  • Make eye contact. This will help them focus on you.
  • Try to minimise competing noises, such as the radio, TV or other people’s conversation.

Using body language

  • Someone with dementia will read your body language. Agitated movements or a tense facial expression may upset them, and can make communication more difficult.
  • Be calm and still while you communicate. This shows that you are giving them your full attention, and that you have time for them.
  • Never stand over someone to communicate – it can feel intimidating. Instead, drop below their eye level. This will help them feel more in control of the situation.
  • Standing too close to someone can also feel intimidating, so always respect their personal space.
  • If someone is struggling to speak, pick up cues from their body language. The expression on their face and the way they hold themselves and move about can give you clear signals about how they are feeling.

Speaking clearly

  • As the dementia progresses, people will become less able to start a conversation, so you may have to start taking the initiative.
  • Speak clearly and calmly. Avoid speaking sharply or raising your voice, as this may distress them even if they can’t follow the sense of your words.
  • Use simple, short sentences.
  • Processing information will take someone longer than it used to, so allow enough time. If you try to hurry them, they may feel pressured.
  • People with dementia can become frustrated if they can’t find the answer to questions, and they may respond with irritation or even aggression. If you have to, ask questions one at a time, and phrase them in a way that allows for a ‘yes’ or ‘no’ answer.
  • Try not to ask the person to make complicated decisions. Too many choices can be confusing and frustrating.
  • If the person doesn’t understand what you are saying, try getting the message across in a different way rather than simply repeating the same thing.
  • Humour can help to bring you closer together, and is a great pressure valve. Try to laugh together about misunderstandings and mistakes − it can help.

Whose reality?

  • As dementia progresses, fact and fantasy can become confused. If someone says something that you know is not true, try to find ways around the situation rather than responding with a flat contradiction.
  • Always avoid making the person with dementia feel foolish in front of other people.

Physical contact

  • Communicate your care by the tone of your voice and the touch of your hand.
  • Don’t underestimate the reassurance you can give by holding or patting their hand, if it feels right.

Show respect

  • Make sure no one speaks down to the person with dementia or treats them like a child, even if they don’t seem to understand what people say. No one likes being patronised.
  • Try to include a person with dementia in conversations with others. You may find this easier if you adapt the way you say things slightly. Being included in social groups can help a person with dementia to keep their sense of identity. It also helps to protect them from feeling excluded or isolated.
  • If you are getting little response from someone with dementia, it can be very tempting to speak about them as if they weren’t there. But disregarding them in this way can make them feel very cut off, frustrated and sad.

Other causes of communication difficulty

It is important to bear in mind that communication can be affected by other factors in addition to dementia, for example:

  • Pain, discomfort, illness or the side effects of medication. If you suspect this might be happening, report it to your manager.
  • Problems with sight, hearing or ill-fitting dentures. Make sure the person’s glasses are the correct prescription, that their hearing aids are working properly and that their dentures fit well and are comfortable.
  • Parkinson’s symptoms can cause difficulties with communication.

3.9 Mild memory problems

3.11 Dementia with Lewy bodies