One of the biggest challenges facing caregivers and loved ones of someone with moderate to severe dementia and/or intellectual and developmental disabilities (IDD) is communication. Both conditions can affect a person’s ability to understand what is being said and to respond in a clear, appropriate and easy-to-understand way. Because communication can become so challenging, many caregivers and loved ones make the mistake of getting visibly frustrated, avoiding communication as much as possible and even speaking as if the person with dementia and IDD isn’t in the room and by nature can’t understand anything being said.

There are many general tips caregivers can follow to make communication easier, such as maintaining eye contact, speaking slowly, giving extra time for a person to respond and phrasing questions as simply as possible. Loved ones with dementia and IDD can also benefit from communication aids designed to help both them and their caregivers communicate effectively. 

Useful communication aids to know

  • Whiteboards: Sometimes it’s best to start off simple, with something you may already have in your home. Whiteboards are a simple but effective way to leave messages for your loved one and give them information and reminders when you’re not around to give it to them verbally. For example, you can hang a whiteboard by your loved one’s favorite chair, and leave a message which lets them know what day it is, where you are, when you’ll be back and other important information they may need to know, like that a friend is visiting at noon. Be sure to keep the information simple and concise to avoid confusion.  
  • Communication cards and boards: Images can be especially helpful with loved ones who are nonverbal or struggle with word recall, and can help decrease the frustration they feel when they are unable to express their wants or needs. Communication cards provide words and images a loved one can point to convey a message or request, such a food when they are hungry, or a bed when they want to take a nap. Some boards and card sets have themes, like “places” and “dressing” where loved ones can complete sentences like “I want to go…” and “I want to wear…” using support from pictures.
  • Speech-generating devices and apps: These are similar to communication cards, but add an audio element so both you and your loved one with dementia or IDD can hear the word spoken aloud. This not only helps reinforce the sound of important words to your loved one, but can also be helpful in getting your attention when they have something they want to express.
  • Memory books: These are a great way to communicate with your loved one about the past, as well as important people and places in their life. Start by thinking of important things in your loved one’s life they regularly need to remember or communicate about. For example, if their brother regularly visits, include a picture of him and his family, with notes like “My brother John. His wife Susan. His daughter Samantha.” Important places and items like “my hospital,” “my childhood home,” or “my favorite blanket” can also be included. Memory books are a great tool for reminiscence, which can be both a soothing activity for your loved one and an opportunity to better understand them and their values for you.
  • Remote communication devices: If you need to communicate with your loved one when you’re not in the home, there are several options to consider. Some loved ones can successfully used simplified telephones with limited features, and dementia- and IDD-friendly designs like picture buttons. Others may benefit from more specialized applications, like Alzheimer Master, which allows you to send customized notifications and reminders in your own voice.

Keep in mind that people with dementia and IDD all have different needs, and what works well for one person might not work for another. You may have to try out different options to find a method that your loved one responds best to. Just remember that changing your loved one’s routine suddenly can be distressing, so try to introduce tools slowly and gently, and don’t expect your loved one to get the hang of using them immediately.

For more support

  • Look into attending a Dementia Friends session to learn more about communication techniques and better understand the challenges your loved one may be facing.
  • Reach out to your local Board of Developmental Disabilities for more information on assistive technology and other key services to support loved one’s who have IDD as well as dementia. Many communities also have centers dedicated to the IDD population, including those with dementia, such as Ohio’s Welcome House.
  • Contact the Alzheimer’s Association’s 24-hour dementia helpline at 800-272-3900 if you need support and guidance quickly. 
  • Explore care-coaching programs like WeCare…Because You Do to put together an action plan to address communication and care needs with the support of a professional care consultant.

This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00).