The later stages of dementia
They may not understand what is being said to them and are less likely to be able to respond verbally as they may have limited or no speech. They may repeat the same phrase or sound, or may only be able to repeat a couple of words. Some people may start talking lots but their words don’t seem to make sense. In this case, try to identify the feelings that the person is trying to get across and respond to these. For example, if the person is smiling and chatting happily, respond to them in the same way.
Although the person may not be able to communicate verbally, they may still be able to show their needs and emotions in other ways. Rather than speaking, they may use behavior, facial expression, gestures, and sounds to try and communicate how they are feeling and what their needs are.
Try to support the person to communicate as much as possible. It can help to observe their body language, behavior, and facial expressions. Knowing the person and how they communicate will help you both to enjoy time together. It’s important to keep communicating with the person and look for opportunities for meaningful engagement. Finding ways to engage the person’s senses can help.
When you’re thinking about how to communicate with the person, bear in mind their needs and background – including their cultural needs. For example, people from some cultural backgrounds may feel uncomfortable or distressed if you’re too close to them when you’re communicating with them.
Communication Tips: Late Stage Dementia
The quality of life for people living with dementia is largely dependent on their connection with others. Maintaining a relationship can be a complex and challenging process, especially when verbal communication is lost. During the late stage of dementia, individuals may lose the capacity for recognizable speech, although words or phrases may occasionally be uttered.
However, even if the person can no longer communicate verbally or recognize you, they likely will still be able to communicate in other ways and feel your affection and reassurance. At this stage, non-verbal communication will become increasingly important. The world is primarily perceived through the senses by people with late-stage dementia. We as caregivers can take advantage of this and use the senses to maintain a connection.
• Touch: Hold the person’s hand. Give a gentle massage to the hands, legs, or feet.
• Smell: The person may enjoy the smell of a favorite perfume, flower, or food, which may bring back happy memories.
• Vision: Videos can be relaxing, especially those with scenes of nature and soft, calming sounds.
• Hearing: Reading to the person can be comforting, even if they may not understand the words. Speak gently and with affection; your tone can help the person feel safe and relaxed. Music is a universal language that promotes well-being for most of us. Sing together or play music, especially the type of music the person has enjoyed throughout their life.
Research suggests that although someone in the late stage of Alzheimer’s has lost the ability to talk and express needs, some of the person’s core sense of self remains intact. By maintaining a meaningful connection using nonverbal communication strategies, we’re able to tap into the person’s remaining faculties and truly improve their quality of life.
keep eye contact when communicating
non-verbal communication (such as gestures, facial expression, and body language) can help
use appropriate physical contact (such as holding hands) to let the person know you are there and offer reassurance
don’t rush – allow plenty of time and look for non-verbal clues from the person
even if you don’t think the person can follow what you’re saying, continue talking to them clearly. They may still feel a certain way even if they don’t fully understand what you’re saying
consider responding to them in the way they respond to you (‘mirroring’ them).
Late Stage Communication
During the late stages of Alzheimer’s disease, problems with speech and understanding language increase considerably. Individuals may repeat questions and words over and over, they may contract several words into one to form nonsense words, and may even produce unintelligible sounds without a beginning or an end. It may be very difficult for a caregiver to know if a person is hungry, needs to use the toilet, or is in pain.
Here is where close observation of body language is important. Any utterance or gesture should be viewed as an attempt to convey meaning, and caregivers need to tune in to what the person is trying to communicate.
Back to basics
How we communicate with a person with advanced dementia can vary, depending on what we know about the individual – particularly things they have enjoyed during their life. It can be influenced by where they are receiving the care (in their own home, care home or hospital) and the relationship they have with the people providing care and support.
It sometimes helps to think about how we communicate with a baby or toddler just starting out on their life. We have to be very careful when making comparisons between older people and children. We do not want to be in the habit of treating adult citizens as if they were children in a way that would feel patronising.
From a conceptual point of view, however, if we see human development as being triggered by the brain maturing through infancy and childhood, what we see happening in dementia can be viewed as a reversal of this process.
There are some striking similarities between what babies and toddlers need from their carers or care workers and what people with advanced or end-stage dementia need from theirs. Most people who have cared for babies or toddlers find some reactions that come quite naturally.
We feel drawn to use touch, to hold, to stroke gently, to achieve eye-contact, to try to make them smile, to soothe them when they cry and to make sure they are comfortable. Over time we get to know the personality of the baby or toddler and what they are trying to communicate.
Communicating with a person with advanced dementia requires us to use these same set of skills. We need to recognise that we are caring for someone who has a long life behind them and many stored memories and experiences. If we can find a bridge into these memories we can find a way to communicate with them and nurture their spirit at this final stage of life.
Communication should be there until the end. Never assume that the person cannot hear or understand you. Try reminiscing about their past, talk to them about things of interest (for example, how the family are and what the grandchildren are doing). Pick up on a hobby or interest they may have had (if they enjoyed horse racing, talk about the races that day, the form of the horses, the odds and the jockeys involved).
Non-verbal communication is vital. Touch can be used to stimulate senses and provide reassurance. Try to achieve eye contact. Be aware of the tone of your voice. Remember that the expression on your face will convey more than the content of your words.
Communicating well with a person in end-stage dementia is not written about extensively. It is something that is best seen first-hand. Some years ago, communication experts Kate Allan and John Killick undertook an in-depth piece of work in Australia called the Good Sunset Project specifically to develop ways of working with people with advanced dementia. They based this on a communication approach developed in coma work and got some very positive results.