Myth 1. People with dementia cannot understand what is going on around them.
Changes to communication, memory, and perception can create the illusion that people with dementia are no longer aware of the world around them. However, people living with dementia typically maintain high levels of awareness in at least some areas. These levels can fluctuate, and lacking an understanding or awareness in one area does not mean that this will be true in every area.
Many researchers have shown that levels of awareness can remain high, and loved ones often report similar experiences. Aditionally, interacting with individuals who seem to lack awareness as though they are aware can improve outcomes and displays of awareness.The behaviours expressed are symptoms, but not necessarily from the cause that we attribute them. Keeping this in mind can improve communications as well as quality of life.
As we will continue to say throughout these posts, symptoms will present differently for different people. How any person with dementia reacts is individual, and it is a progressive illness. Individuals in early stages especially are fully aware, but may have difficulties communicating this or recalling specific information. This can cause distress, and similar situations continue to cause distress but the ability to communicate this becomes more limited. This can then display as a lack of awareness, and cause further distress. Though this is simply one path to that presentation and expressions will vary.
Myth 2. People with dementia cannot communicate what they want.
As dementia progresses, the ways that people can communicate does as well. However, this does not mean that any ability to communicate is gone. In the early stages, there is often minimal impact on communication, and throughout the progression, specific changes will vary based on the individual. Just as someone who is Deaf often communicates through signed languages, non-verbal communication, and written communication instead of aural communication people living with dementia also communicate in other ways. Additionnally, there is often an awareness of the problem but a barrier in effectively communicating this. It may also be the case that there is only the ability to recognize a particular negative sensation (or a positive one) so the specific thing cannot be communicated. We put together 6 things to keep in mind when communicating.
1) Allow time to process, be patient : It can take a little longer to understand what was said, or think of a way to respond. It is important to allow the person some time for this, rather than immediately attempting to fill in the blanks, getting frustrated, or immediately repeating yourself.
2) Converse in a quiet space : People living with dementia may become more easily distracted and overwhelmed. If you can converse in a quiet, comfortable place this will limit barriers. It can also help you feel less overwhelmed and more patient.
3) Believe that communication is possible : Automatic assumptions of the persons abilities are not beneficial. Instead, use alternative approaches to communication and grade expectations based on the individual.
4) Treat them with dignity and respect : No one likes to feel disrespected, and even if understanding of language begins to deteriorate, body language, tone, and additional non-verbal cues can display this. Similarly, not allowing basic dignity is noticeable.
5) Meet the person where they are : While we should assume that communication is possible, we should also be aware that these changes are real. Meeting the individual where they are on that day can limit frustration on both parts.
6) Encourage and pay attention to non-verbal cues : Often, it is harder to communicate with spoken language. Rremembering the conversation may be difficult as can finding the right words. Other methods of communication, like body language and gesture can also be effective modes of communication.
For more information on dementia and understanding visit https://www.dementiacarers.ca/when-the-person-with-dementia-doesnt-know-they-have-limitations-anosognosia/
For more information on dementia and communication visit https://socialcare.wales/service-improvement/effective-communication-with-people-with-dementia#section-28762-anchor
Other Sources Consulted
https://www.alz.org/help-support/caregiving/daily-care/communications
Clare, L. (2009). Awareness in people with severe dementia: Review and integration. Aging and Mental Health. https://pubmed.ncbi.nlm.nih.gov/20155518/