Dementia Action Week is all about supporting people with dementia and raising awareness of this common degenerative condition. There are currently around 900,000 people affected by dementia in the UK. This year, the theme of Dementia Action Week is Diagnosis. The Alzheimer’s Society has chosen this focus to highlight a recent decline in dementia diagnosis rates, demonstrate the benefits of receiving a diagnosis and tackle misconceptions about memory loss being a normal part of aging.
What is dementia?
Dementia is an umbrella term for a range of progressive conditions that affect the brain. Each type of dementia stops a person’s brain cells (neurones) working properly in specific areas, affecting their ability to remember, think and speak.
There are over 200 different types of dementia. Alzheimer’s disease is the most common, followed by vascular dementia. Different types of dementia cause damage to different parts of the brain, and therefore have different symptoms. Each person is unique and will experience dementia in their own way. People often associate dementia with memory loss, but while this is the case for some, there are many other symptoms including:
• Problems with concentration.
• Difficulty following a ‘train of thought’.
• Difficulty following conversations.
• Problems with word finding.
• Difficulties making decisions and judgements.
• Difficulties with eating, drinking, and swallowing.
• Changes in personality or behaviour; becoming withdrawn.
• Difficulties with visual perception and spatial awareness.
• Literacy and numeracy difficulties.
• Problems with perception, orientation and movement
Dementia is progressive, as time goes on, communication will likely become more difficult for someone with dementia. Although dementia can take years to advance, symptoms can worsen at each stage. Receiving a diagnosis is often an important step towards managing symptoms and coping with dementia. The Alzheimer’s Society found that 90% of people reported that getting a diagnosis had been helpful, citing a number of reasons, including access to professional advice and support, the ability to plan for the future and avoiding reaching ‘crisis point’.
Dementia and legal proceedings
While some participants in legal proceedings who have dementia may be found to lack capacity (or may not be fit to plead), others will have capacity but may have cognitive or communication challenges which the court will need to accommodate to ensure fair participation.
In this blog, we’ll explore some of the common cognitive and communication difficulties which might impact an individual with dementia’s participation in legal proceedings. We’ll also unpack some strategies which can be used to assist.
Aphasia (using and understanding language)
People with the most common types of dementia, for example, Alzheimer’s disease and vascular dementia, usually have a mild form of aphasia (NHS). Aphasia is a communication disorder which impacts a person’s expressive and receptive communication.
Expressive aphasia affects someone’s ability to find the right words. Sometimes related words might be used instead, for example (‘vehicle’ instead of ‘helicopter’) or substitute descriptions (‘thing to put food on’ instead of ‘plate’) may be used. Other people may find it difficult to insert a replacement word. Expressive aphasia doesn’t mean that an individual doesn’t recognise a person, item or term, or doesn’t know what they are discussing, they are simply unable to access the correct name or ‘label’.
If the person with expressive aphasia struggles to find the words they want to use, or they use words which don’t make sense, acknowledge what they’ve said and encourage them to say more. It may also be helpful to encourage them to draw, write or gesture, to help them convey what they wish to communicate. Additionally, if they struggle to find the words they want to use, or use words which don’t make sense, it may be helpful to acknowledge what the person has said, then encourage them to explain further.
Receptive aphasia affects the person’s understanding, making it difficult for someone to process and understand the language they hear.
If someone with dementia finds it challenging to understand verbal information, it can help to use simple language and concrete examples. Avoid using complex language or abstract concepts. Instead use familiar ‘everyday’ words to help the person understand what you are saying. Speaking in short sentences and imagining giving information in ‘bullet points’ can also be helpful. Make sure you clearly indicate when you begin a new topic and allow extra time for the person to refocus when switching between subjects.
It may be useful to use non-verbal communication yourself when interacting with someone with dementia. For example, a great deal of information can be conveyed through body language, facial expressions and tone of voice. Visual prompts can also be helpful, for example a pictorial list of the stages in a trial.
People with dementia may experience changes in their tone of voice or pitch. They may speak more slowly or loudly than usual, or they may sound more monotone. This can make it difficult for others to understand their speech or to interpret their emotion. If someone with dementia is not able to express themselves clearly, they may lose confidence, and feel anxious or depressed. They may also get frustrated because they are not able to communicate in the way they used to.
If a person is finding communicating through speech challenging, there may be strategies which assist. Non-verbal communication, such as facial expressions, gestures, and body language, can play an essential role in communication. For some individuals, exploring other communication mediums (such as writing, texting or typing) may also be assistive.
Technology is also a great asset, with many apps available to help support communication. Some helpful apps include:
- CommunicAide: https://communicaide-aac-speech-therapy-ios.soft112.com/
- iNameIt: https://apps.apple.com/us/app/iname-it/id486781414
- The Tavistock Aphasia Trust has a library of software options for different needs: https://www.aphasiasoftwarefinder.org/app-software-list
Memory loss can be a symptom of any type of dementia, it is often among the very first signs in Alzheimer’s disease, and this can impact communication in several ways. People with dementia may repeat themselves or forget what they were saying, losing their ‘train of thought’. They may also have difficulty remembering important information such as names, dates or events.
Memory loss can be a distressing part of dementia, both for the person with the condition and for the people close to them. Memory loss can occur due to damage to the brain, affecting areas involved in creating and retrieving memories.
In court, it is especially important that respondents or defendants (in particular) can follow the thrust of evidence and retain key details from hearings, in order to make informed decisions. It may be helpful to give the person with dementia written cues, such as a ‘court diary’ to assist with their retention of their hearing or trial. If reading is difficult for them, voice notes may be of assistance. Regular recaps of key points may aid the person with dementia to retain important details. Another helpful measure is taking regular breaks within the court day to check the individual’s retention and understanding of details, and to allow them to ask questions about anything they are unsure about.
Other cognitive difficulties
As dementia progresses, it can become challenging for people to maintain their focus on a conversation or activity for an extended period. They may become increasingly distracted or lose focus, leading to a disjointed or incomplete conversation, or causing them to miss important information. It’s also important to consider the impact of fatigue, which may be more severe.
Dementia affects the brain and has an impact on cognitive ability. Therefore, someone with dementia may not be able to think as quickly as they used to, may not understand complex ideas and may become easily confused. They may need additional processing time to figure out how to respond to a sentence or question. It can also be harder for people with dementia to hold multiple pieces of information in mind at once.
In court (if the individual has capacity), the individual’s cognitive functioning will need to be considered so that strategies can be put in place to ensure they can participate in their trial or hearing to the best of their ability. Strategies may include shorter court days, more frequent breaks, regular recapping of information and the other memory supportive strategies explored in the previous section. It may also be helpful to find out what time of day they are best able to attend to information (for example, when they feel most alert and least fatigued) and to schedule key events within the trial or hearing to accommodate these needs (for example, scheduling their evidence when they are most alert).
Dementia can have a significant impact on cognition and communication, including during legal proceedings. The difficulties associated with dementia can hinder an individual’s ability to understand and retain information, and express themselves effectively, potentially impacting their ability to participate in their trial or hearing. However, small adjustments can improve participation for people with dementia, depending on the nature and progress of their condition. It is crucial for court professionals to employ strategies that accommodate the unique needs of the individual.
- If you want to read more, the Alzheimer’s Society has some additional tips on communication as well as lots of other useful information. The dementia support line on 0333 150 3456 is also there to help.
- You can also read our guide for legal professionals assisting a client who has dementia, created in partnership with Dementia UK.