Dementia: communication, capacity and court

What happens when someone with dementia finds themselves accused of a crime? Charlotte talks about how intermediaries can provide support with communication.

Often portrayed as a condition where people suffer memory loss, the full impact of dementia is often misunderstood. Dementia has other symptoms, including difficulty with problem solving and organising, and difficulties with communication. We often assist people with dementia in the criminal and family courts, but how can we help them to participate in their proceedings as meaningfully as they can.

What is dementia?

Dementia occurs when disease, e.g., Alzheimer’s disease, causes nerve cells to die and damages the brain. Different types of dementia cause damage to different parts of the brain. The symptoms people experience will depend on which part of the brain is damaged. It is a progressive disease and symptoms will get worse. People can also have a combination of dementias. Some of the different types of dementia are listed below:

  • Alzheimer’s disease: is caused by a collection of proteins in the brain that create plaques and tangles, that interfere with and damage nerve cells. This is the most common cause of dementia.
  • Vascular dementia: is an umbrella term used for a group of conditions caused by problems with blood circulation to the brain. This can cause small blood clots, blocked arteries and burst blood vessels. This is the second most common type of dementia in the over 65’s.
  • Frontotemporal dementia: is caused by the death of nerve cells and pathways in the frontal and temporal lobes of the brain. It is the second most common form of dementia for under 65’s.
  • Lewy Body dementia: is caused by clumps of protein forming inside the brain cells. It’s thought that the proteins interfere with the signals sent between brain cells.It affects more than 100,000 people in the UK.

Interestingly there is an increased risk of developing dementia in later life for those who have experienced a traumatic brain injury (Shively et al, 2012). Older individuals with learning disabilities are five times more likely to get dementia when compared to the general population. There’s also an increased risk of Alzheimer’s disease in people with Down syndrome and more than 17,000 people under 65 years of age in the UK have early-onset or young onset dementia.

Dementia is mainly associated with memory loss, however, there are many other symptoms, these include:

  • Problems with concentration
  • Difficulties with eating, drinking and swallowing
  • Changes in mood or behaviour
  • Difficulties with vision
  • Problems with perception, orientation and movement

Everybody is different and people can develop symptoms at different times.

Memory:

There are three main stages to memory storage, these are:

  • Encoding – Getting the information into the individuals memory
  • Storage – The retention of the encoded information
  • Retrieval – Getting the information out of the memory and back into awareness

There are various ways of processing information, such as, visual encoding (images) and acoustic encoding (sounds/verbal).

Encoding can be selective and sometimes details are missed and not encoded. This is where recoding steps in; recoding is the process where information is taken from the original form it was delivered and adapted into a form that we can make sense of and encode. For example, learning the colours of the rainbow by using an acronym or creating a song.

How does dementia affect communication?

There are various factors that can impact on communication, typically, people can struggle to communicate when tired, in pain or unwell. For people living with dementia, other factors impacting communication include the individual’s personality, the type of dementia the person has, and the stage of the dementia.

Some examples of how dementia affects communication:

  • A person’s word finding ability; they may use related words for example, book instead of newspaper
  • A person may substitute words for example, “that thing you write with” instead of pen
  • Some may struggle to find any word at all
  • At times a person may provide a word that has no meaning or words in the wrong order
  • Bilingual people living with dementia may go back to speaking in their first language
  • They may repeat themselves over and over
  • At times may make inappropriate comments for the situation

Some people may struggle to follow a conversation because they do not understand what has been said, they cannot concentrate or keep their focus, they are thinking more slowly, or they are struggling to put together a correct or appropriate response.

When someone is unable to communicate effectively it can contribute to feelings of frustration or anxiety and changes in mood and behaviour.

Most people with dementia also have sight or hearing problems which further impact on communication.

Why is capacity important?

When a person has mental capacity, it means that they are able to make a specific decision at a certain time. Someone who cannot do this is said to lack capacity and this can happen for various reasons, one of which being a condition that affects the brain such as dementia.

To have mental capacity an individual must be able to:

  • understand the information that is relevant to the decision they want to make
  • keep the information in their mind long enough to make the decision
  • weight up the information that is available to make the decision
  • communicate their decision in any way, this can include, talking, sign language and muscle movements such as blinking or squeezing someone’s hand

Dementia is a progressive illness, and the symptoms can fluctuate, therefore, as intermediaries we are able to reassess an individual with dementia, especially if there is a significant amount of time between the previous assessment and their court case. This allows us to inform the court of any changes to the individuals presentation. Throughout the hearing or trial intermediaries are also able to provide judge updates that inform the judge about how the individual is coping, the strategies that are and are not working, any difficulties that have arisen and any further recommendations that could be helpful.

As dementia progresses some individuals may become unable to make decisions for themselves. The Mental Capacity Act can help people with dementia, their carers and professionals to make decisions and a plan for the future.

As memory loss is the main symptom of dementia, an issue that can arise in terms of court is that an individual may not remember facts about a crime, and this could impact on their ability to plead. “English law describes those who lack sufficient capacity to participate meaningfully in criminal proceedings as being unfit to plead”. Some cases may not proceed due to a person’s difficulties, such as victims with dementia not being able to give evidence.

There have been improvements in the trial process to make it easier for defendants with communication difficulties to stand trial. One of these improvements is the right to an intermediary – who can support the defendant to understand proceedings and communicate with the court. Intermediaries can support defendants with communication difficulties to a degree, however, an individual’s ability to give evidence is a decision for the judge. The judge may ask for the opinion of a psychiatrist or psychologist, but their reliability is for the jury to decide.

How we assist individuals with dementia

As intermediaries we are continually learning and adapting to improve our work, and ensure we are able to provide the best quality support for defendants with communication difficulties.

When working with individuals with dementia we use a variety of skills to promote effective communication, some of which include:

  • speaking clearly and slowly, short sentences
  • establishing someone’s likes and dislikes
  • giving time to respond
  • making eye contact
  • acknowledging what they have said even if they do not answer your questions or what they say seems out of context. Show that you’ve heard them and encourage them to say more about their answer
  • giving simple choices- avoiding complicated choices or options for them

Some examples of possible recommendations we make that are within the court’s discretion:

  • allowing for regular breaks
  • arranging for the defendant to visit the court room before the hearing or trial to help them feel familiar with it
  • allowing them to sit near members of their family or people as part of their support system
  • restricting attendance by members of the public and reporters
  • providing a screen for the defendant to support their participation in the trial
  • removal of wigs and gowns
  • alternative communication aids

Dementia has far reaching impacts on the person living with the disease, and their families. If they find themselves in the criminal justice system, we have to do all we can as intermediaries to help them understand what is happening and ensure they can contribute to the best of their ability. You can find out more about dementia on the Dementia UK website.


References

Shively, S., Scher, A. I., Perl, D. P. and Diaz-Arrastia, R, Dementia Resulting From Traumatic Brain Injury,  Archives of Neurology, 69(10).