On the occasion of Dementia Action Week, which is held from May 16 to 22, we got in touch with Professor Janice Murray and Professor Adele May. Together with Professor Shakila Dada they wrote the Fast Facts booklet “Dementia and Augmentative and Alternative Communication: Supporting Conversations”.
Janice Murray, who is Professor of Communication Disability at Manchester Metropolitan University in the UK, is an advocate for maintaining connectedness with those living with dementia through meaningful, co-constructed interactions. She is the current chair of the AAC Committee for the International Association of Communication Sciences and Disorders (IALP).
Adele May holds a PhD in Augmentative and Alternative Communication (AAC) from the Centre for AAC at the University of Pretoria, South Africa. As a speech language pathologist, she has a special interest in developing interventions that focus on functional real life outcomes for persons with communication disabilities.
Professor Murray, Professor May, what is dementia and what are some of the impacts on families and supporters?
Janice Murray: As a syndrome, dementia is the general label given to a cluster of irreversible changes in cognitive function that include memory abilities, communication skills, reasoning, making sense of your world, and executive functioning skills. Dementia is one of the major causes of disability in older adults and is recognised as a public health priority by the World Health Organisation. Currently there are 50 million people living with dementia worldwide. A global dementia prevalence is forecasted to reach 75 million by as soon as 2030.
Every year, there are nearly 10 million new instances of dementia diagnosis, and the impact of dementia on the health and wellbeing of those living with dementia, including family members, remains poorly understood. In particular, the economic health and social consequences require better understanding to support targeted and timely interventions.
“Dementia is one of the major causes of disability in older adults.”
Adele May: As much as dementia is a biomedical condition, it is actually also a social condition, which means that dementia not only affects the person living with dementia, but also the people around them, for example family members. The person living with dementia experiences changes in cognition and communication from a previous level of functioning. Family members are equally affected. In most instances, family members provide the main caregiving role for persons with dementia, and caring for a person with dementia can pose significant emotional and caregiving challenges.
“Dementia is also a social condition.”
How does dementia impact on the communication between the individual, the carers and the family around them?
Adele May: Communication is an integral part of our human experience. It creates possibilities to develop a sense of connexion with others. Persons with dementia may struggle to find the right word to use, so they may use vague words or what we call empty speech instead of using the actual word they want to describe. They have difficulty recalling recent information and may repeat questions that have already been answered. They also have a tendency to confuse names of people and difficulty in maintaining a topic of conversation. So, essentially this affects the meaning of what is being expressed.
The dementia impacts on one’s ability to be understood, to effectively communicate one’s feelings and preferences and opinions, and to take part in a conversation in a meaningful way. And over time, with the loss of language, persons with dementia may withdraw from social interaction altogether and may appear non-communicative. Maintaining the sense of connexion with persons with dementia becomes progressively difficult, because we know that communication is a reciprocal process where information is exchanged between people.
The communication difficulties impact the people with whom persons with dementia interact, and these are the everyday conversational partners such as spouses, friends, caregivers, and health practitioners. Conversational partners may be distressed at not knowing how to provide appropriate communication support. Therefore, techniques and strategies to support communication throughout the progression of dementia are imperative.
“Techniques and strategies to support communication throughout the progression of dementia are imperative.”
This is obviously where augmented and alternative communication (AAC) can be helpful. What exactly is AAC and how does it work?
Janice Murray: Augmentative and alternative communication, or AAC, is a term used to describe a wide range of techniques and tools that are used to support communication. But it also may be a tool or technique that can support challenges in terms of formulating the words and producing them in a speech stream.
AAC involves providing resources that attempt to compensate for temporary or permanent or changing communication challenges for an individual. The main purpose of AAC is to support the maintenance or the development of typical participation in many aspects of daily life. We take communication for granted until we lose the capacity to use it, or we don’t develop the capacity to use it in a way that is typically recognised, so AAC is trying to level the playing field of participation for individuals with communication disability.
The word augmentative acknowledges that some people require the use of supportive strategies to enhance existing or partly functional spoken communication. Alternative communication, on the other hand, refers to strategies that entirely replace the natural speech attempts. Depending on the person’s complex communication needs, AAC strategies can either augment their communication abilities or provide alternative ways of communicating.
In the field of AAC, different forms of communication are described within two broad categories:
- Unaided AAC describes any form of communication that can be achieved without any additional tools, resources, or equipment. In other words, the person’s body is used to effectively convey meaning, typically for those with adequate motor ability. This could include using sign language or pantomime to get your message across, and we all adopt these strategies when perhaps we can’t remember the word we want to use.
- Aided AAC describes any tool or resource or technology which can act as a substitute for inadequate speech production or language skills, or which can support you to focus on the conversation. These may include quite straightforward things like using photograph albums, so you have a joint focus of attention and recognise the people in the photograph or the activities happening in the photographs. It could be more formalised into something like laminated pictures or word boards. Tablet devices are very much used now, with downloadable picture symbols and other visual materials, and there are also specialised electronic communication aids.
When used together, both aided and unaided communication strategies highlight the multimodal nature of effective communication, and a combination of these can be particularly supportive for those living with dementia and their conversational partners.
The main purpose of AAC is to support the maintenance or the development of typical participation in many aspects of daily life.
Adele May: AAC is helpful to persons with dementia in particular as various forms of AAC techniques and tools and resources can aid their understanding of a situation and enable them to convey a message effectively. The use of AAC supports persons with dementia to participate in decision making conversations, and to share or exchange information and feelings. AAC helps to support and maintain conversational autonomy in those living with dementia.
Conversational partners can use AAC techniques to scaffold or support an interaction to ensure that the communication attempts of a person with dementia are as effective as possible. However, to be most helpful, it is important to start with communication support through AAC as early as possible and ensure that it is tailored to the preferences of each individual living with dementia.
“AAC helps to support and maintain conversational autonomy in those living with dementia.”
What can individuals with dementia and their supporters get from your book?
Adele May: We have developed a freely downloadable resource in the form of a poster which gives key messages from our book. This can be downloaded and pasted in everyday settings like care homes, hospitals, and waiting rooms. It provides essential information for family members, caregivers or anyone that may be affected to help someone with dementia or for those who just need general information on the condition.
Janice Murray: In particular, I would like to think that there would be something for a range of medical staff, health care workers, and family members to recognise what can be positively achieved in terms of supporting and providing intervention that is tailored to the needs of their person with dementia and how that will change over time.
Many thanks for the interview and for the insight!