According to Alzheimer’s Research UK, there are over 850,000 people living with dementia in the UK and almost 600 people per day develop dementia. Dementia is the umbrella term to describe progressive neurological disorders. There are over 200 diseases that cause dementia with Alzheimer’s disease, vascular dementia, frontotemporal dementia, dementia with Lewy bodies and mixed dementia being the most common. 

The Decline of Communication

Over time the diseases causing dementia spreads to different parts of the brain.  When the cells in the temporal lobes in the brain start to die, a person may have difficulty with language.

Communication Skills Loss Through the Stages of Dementia

Early dementia / Alzheimer’s

As a person’s ability to communicate declines, friends and family will need to adjust their ways to connect. Accepting these changes can be devastating for the person’s family as they feel they are losing the capability to talk to their loved one. In the early to mid-stages of dementia the sufferer might feel scared, angry, upset and confused with their own decline so, however hard it is for the family, empathy is crucial and the person’s feelings need to be at the forefront.

Ways to communicate

To help reduce the confusion or distress of a person with dementia, below are some ideas to communicate effectively.

Verbal communication

• Being clear and concise in what you say. Use short sentences and short words.
• Use closed rather than open questions. For example, “Do you want to go for a walk?” rather than “What would you like to do this afternoon?” 
• Offer simple choices. For example, “Boots or trainers”?
• Reinforce a message with a visual prompt such as a photograph or video. 
• Always introduce yourself when you first see them. 
• Avoid using a childlike tone of voice. You may witness the deterioration in mind and body so the natural reaction is to treat them as a vulnerable minor. They are adults with life experience, so it is crucial to maintain respect.
• Make sure the quality of conversation does not diminish. They are the same person so continue to talk about subjects that you would normally talk to each other about.  

Preparing to communicate

It is a good idea to prepare what to say before interacting with the person. This can limit uncomfortable pauses experienced by both of you. Use inspiration from your own activities or topical news stories.

Think about the space too. Will it be easy for the person to hear you? Maybe turn off the telly or radio so they can concentrate on the conversation. Too many people having multiple conversations will be confusing. Try and avoid chatting in a group as it can be hard for the person to keep up. 

Be aware when the person may be getting tired of talking or frustrated with how they struggle with language. Reading their body language will become vital with the decline in their speech.  They may have a time of day that they are more inclined to chat.

Non-verbal communication

When speech does become muddled, the person may start to use non-verbal forms of communication. Take time to understand how they use their body language, including their hand gestures, facial expressions and posture, to communicate how they feel. 

“Over time I was able to recognise that verbal communication is only one part of how to connect with someone. Reading mum’s facial expressions was of vital importance, as was listening to the tone within the words and sounds she made, whilst observing her body language all allowed me to recognise the type of conversation she was trying to have with me.”  

- Gail Bridgeman, Trustee, Dementia Concern

Try and recognise their tone of voice. You may be able to work out if they are in distress or happy and content. Make sure your tone of voice and facial expressions match so as not to create confusion. 

Active listening

Be patient when listening. Words and sentences will take longer to arrive. Don’t try and finish sentences or hurry them up and don’t interrupt. Eye contact is vital and repeating their story will show you have listened and understood what they have said. Always keep reassuring them with a smile.

What not to say

It is a struggle to deal with a loved one’s inability to remember. A lifetime of memories becoming forgettable. Experiences shared but now only yours to hold on to. So, sometimes, you may feel desperate for them to remember and ask questions that can confuse and upset them. 

• Avoid questions that test their memory so do not start a sentence with “Do you remember” or “Can you tell me”. 
• Memory loss can mean the person asks the same question over and over which can prove frustrating but try hard to avoid saying “I’ve already told you”.  
• A person with dementia cannot control how their personality and character transforms so do not upset them by saying “You used to like it”.

Briefing others

It is a good idea to brief extended family, friends and healthcare professionals with tips on how best to talk to the person. If they do not see them very often, deterioration could be very apparent and shocking. Refrain from briefing them in another room as this can exacerbate paranoia which can be a symptom of dementia. It is a good idea to brief people before they arrive.

Never stop communicating

“As Mum deteriorated, my family and I struggled to carry on talking to her as normal. Part of me believes that if we continued to encourage her to talk, her decline in speech and communication wouldn’t have been so rapid.”
- Jude, Leighton Buzzard, Beds.

It is tough to adjust to the different ways to communicate with a loved one as they progress through the stages of dementia. It is heartbreaking for the family and frightening and confusing for the sufferer when language and speech becomes problematic. 

Charities such as Alzheimer’s Society, Dementia UK, Dementia Concern and Alzheimer’s Research UK have lots of information on their websites that can support families living with dementia. You could also talk to people in the same situation; carer café’s (after lockdown restrictions or online) can be found in most areas. Postcode searches on your local council website will give you your closest café.

Out and about with the assistance of MedicAlert

A person living with dementia will likely want to keep their independence for as long as possible. Most often, this will also be the wish of their loved ones. However, fear that they cannot always be with the diagnosed person to keep them safecould cause concern, leading to a sense of ‘wrapping in cotton wool’ and the individual feeling like they have no alternative but to stay at home at all times.

Someone in the early stages of dementia will still be able to walk to the shops, continue with their hobbies and remain socially and physically active. But there can be a  worry that confusion could suddenly occur, leaving the person unable to get home or coherently communicate to say they are lost.