We are delighted to publish the following article written by Dr Jacki Liddle, on the challenges of communication expereinced by people living with many types or causes of dementia.
Thank you Jacki.
Challenges of communicating as part of living with dementia
By Dr Jacki Liddle, March 2022
While people think of memory loss when they think about dementia, many do not realise that changes to communication are common for people living with dementia. Because many different areas of the brain are involved in communication, the changes people experience with their communication can vary widely.
Changes can range from having trouble finding the right word when communicating, having difficulty keeping up when lots of people are talking, to profound loss of ability to understand and/or express oneself through speech and language. Some people living with dementia experience primary progressive aphasia, in which communication changes may be their main and most challenging symptom. It is recommended to see a speech language pathologist/ speech therapist if communication is creating difficulties.
What helps?
Because communication is so vital in daily life, there has been increased attention in ways of supporting communication. At present, there are no “one size fits all” treatments that work for everyone. There is some evidence for,
Speech-language pathologist interventions in people with moderate-severe dementia including cognitive stimulation programs [1]
Learning alternative communication strategies – ranging from gestures, images and more high-tech devices
Training together with communication partners [2]
Including communication training of family and staff care partners as part of other education [3]. This is sometimes to reduce unhelpful patterns of communication from helpers called Elderspeak.
Current research is also exploring supporting communication as part of reablement approaches. More information is available here.
Getting back to basics is also important and people share that these approaches can also help:
Setting up so the environment is not too noisy or distracting
Choosing a time so things aren’t rushed or stressed
Working together to figure out the message
What about technology?
Technology is providing to be a useful way for many people to support their continued communication. This can range from:
Using mainstream technology to communicate at a time that suits you and in a way that lets you check and refer back to it later (eg email or social media)
Using picture-based reminders or ways to communicate something when communication is challenging
Finding a format that suits you in communicating (video conferencing, listening and reading audio books at the same time, sharing pictures rather than long messages)
-Specialised technology like AAC devices (which stands for Augmentative and Alternative Communication) [4,5]. While people might think of Stephen Hawking, AAC can also include picture cards and communication books. At the moment, setting up an AAC system and learning to use it can take a lot of effort. People hope that as technology gets “smarter” and is able to be personalised more, these systems will be easier to use.
Here are some other resources and information to help with communication changes
Brief introductory resources (videos and brochures) about communication and technology are now up and shared here: https://itee.uq.edu.au/project/florence-project/community
Information: Prof Alison Wray has great videos on YouTube: https://www.youtube.com/watch?v=6uu63PqWGaU
A free education module for care partners was developed by researchers at the University of Queensland and is shared on YouTube. (MESSAGE and RECAPS) https://www.youtube.com/channel/UCIUtBy2icw38Hxk0yPufFBw
You may also want to contact your local
Speech Pathology/ Therapy association
Aphasia Associations, for example: Australia / USA / UK Connect
References from the summary
[1] Swan, K., Hopper, M., Wenke, R., Jackson, C., Till, T., & Conway, E. (2018). Speech-Language Pathologist Interventions for Communication in Moderate–Severe Dementia: A Systematic Review. American Journal of Speech-Language Pathology, 27(2), 836–852. https://doi.org/10.1044/2017_AJSLP-17-0043
[2] Rogalski EJ, Saxon M, McKenna H, Wieneke C, Rademaker A, Corden ME, Borio K, Mesulam MM, Khayum B.Communication Bridge (2016). A pilot feasibility study of Internet-based speech-language therapy for individuals with progressive aphasia.
Alzheimers Dement (N Y). 2016 Nov; 2(4):213-221 https://doi.org/10.1016/j.trci.2016.08.005
[3] Conway, E. R., & Chenery, H. J. (2016). Evaluating the MESSAGE Communication Strategies in Dementia training for use with community‐based aged care staff working with people with dementia: a controlled pretest–post‐test study. Journal of Clinical Nursing, 25(7-8), 1145-1155.
[4] Bourgeois, M., Fried-Oken, M., & Rowland, C. (2018, 38-12 07:38:49). AAC Strategies and Tools for Persons With Dementia (world) [Review-article]. The ASHA Leader; American Speech-Language-Hearing Association. https://doi.org/10.1044/leader.FTR1.15032010.8
[5] May, A. A., Dada, S., & Murray, J. (2019). Review of AAC interventions in persons with dementia. International Journal of Language & Communication Disorders, 54(6), 857–874. https://doi.org/10.1111/1460-6984.12491