Dementia is a collection of irreversible changes that occur in the brain. The course of dementia is unrelenting and its impact has real-world implications for individuals living with this condition. The most noteworthy is the life-altering consequences with regard to communication and valued relationships.
Communication is at the core of human relationships. It is in the chit-chatting between friends, sharing of feelings with a loved one, or talking about one’s memorable life stories that builds relational connection. For persons with dementia, connecting with others in this manner becomes remarkably difficult due to a deterioration in their ability to communicate. They experience significant confusion with word categories, for instance, instead of asking for a spoon at the dinner table, they may ask for a spade. Persisting difficulties in making sense of spoken language, word finding and a gradual loss of vocabulary progressively compromises their ability to meaningfully contribute to conversations.
Family members, who are usually the communication partners who frequently interact with the person with dementia, report on the pain they experience as a result of the social and emotional disconnection between themselves and the loved one with dementia. This is poignantly captured in the words of a family member who said, ‘… he doesn’t communicate anymore. It’s so strange now, and our contact, it’s starting to fade ...’*
In these instances, alternative and augmentative communication (AAC) is indispensable. AAC is a mechanism for using a range of strategies, aids, techniques and tools to support communication between persons with dementia and their communication partners. The purpose is not to restore the loss of communication, nor to provide a different way of communicating, but AAC strategies provide necessary communication support that may be personalised to suit each individual throughout the trajectory of dementia progression.
Shining a spotlight on the benefit of AAC for persons with dementia is imperative during the current time. Added to the known risk of becoming increasingly isolated socially, persons with dementia have faced an additional risk of isolation and loneliness due to the COVID-19 lockdown restrictions and limited contact time with family. Now, more than ever before, the value of using AAC strategies to achieve the ultimate goal of maintaining communication participation and enabling social connection is highly significant.
AAC is accessible and does not need to be complex or expensive. Research evidence has shown that AAC strategies, such as the use paper-based communication books with pictures and short sentences are effective in encouraging persons with dementia to talk about recent events (e.g. a family celebration). This AAC strategy may be especially useful in the mild to moderate stages of the condition. Pictures can be drawn with pencil on paper, or photographs can be used to support conversation when talking about a topic of interest.
Photographs and pictures can be cut out from newspapers and magazines, or downloaded from the internet. However, it may be most helpful if such communication aids are personally relevant and persons with dementia are given an opportunity to make choices based on their strengths and preferences. For instance, photographs from a family photo album may be helpful to encourage talk about the person’s favourite holiday or a milestone life event. These affordable and accessible items, used as communication aids, may serve as visual support during conversations. AAC with the use of electronic aids, such as computer technologies with applications, also provide opportunities to share enjoyable moments as they act as a joint conversational reference between persons with dementia and their communication partners.
We all make use of multimodal communication in our daily interactions. Spoken words are combined with gestures (e.g. thumbs up) to add more meaning to our feelings and emotions. Likewise, communicating with hand gestures, sounds and facial expressions are natural ways of supporting the meanings of messages when communicating with a person with dementia.
In moments when spoken words are not necessary, communication is still possible with AAC strategies that do not use any tools or aids other than one’s body. In these instances, eye gaze, touch, facial expressions (e.g. frowning to indicate a feeling of sadness, or smiling when happy) are equally powerful means of communication. These AAC strategies may be particularly helpful in the case of persons with severe dementia and a greater loss of language.
However, there is more to AAC than the mere use of techniques and strategies. The use of AAC focuses on the person and it is critically important to get to know the person behind the dementia diagnosis—his or her preferences, dislikes and interests. An exaggerated tone of voice typically used when talking to an infant, although well-meaning, may be disrespectful to the person with dementia. Person-centred communication, such as using the individual’s name, allowing him or her time to process information before responding, and an authentic display of active listening are essential. These person-centred strategies assist in upholding the unique identity of the person with dementia within an AAC-supported interaction.
It is estimated that by the year 2050 more than 130 million people worldwide may be living with dementia (World Health Organisation, 2021). There is a heightened probability of either knowing someone who is personally affected by dementia, or perhaps even becoming part of this estimate. Since AAC is, and will continue to be vital to maintaining functional communication and social connection, it may be metaphorically described as the glue that keeps persons with dementia and their communication partners connected.
*Excerpt taken from: Karger, C.R. 2018. Emotional experience in patients with advanced Alzheimer’s disease from the perspective of families, professional caregivers, physicians, and scientists. Aging and Mental Health, 22(3):316–322. https://doi.org/10.1080/13607863.2016.1261797.
- Author Dr Adele May, PhD AAC alumna and postdoctoral fellow at the Centre for Augmentative and Alternative Communication