Navigating Visits with Those in Late Stage Dementia

Dementia is progressive. In late Stage Dementia one can expect to lose the ability to communicate with words, increased difficulty eating and swallowing, inability to walk safely or at all, increased vulnerability to infections, especially pneumonia and inability to perform or participate in personal care.

This stage is particularly challenging because there is minimal feedback to the visitor. The person with Dementia may present with flat affect, no response to their name or even touch. This often leaves the visitor feeling very sad. At this point people’s emotions take over. People may feel helpless and angry that their loved one is subjected to this. Many times people project their feelings on their loved one. “Mom is not responding because she never wanted to live like this.”

Here is the thing…Perhaps mom verbalized that she “never wanted to live like this” but her presentation is not a purposeful choice at this stage. The inability to process, speak, move or react is due to the atrophy in the brain; the brain simply is not able to function as a healthy brain. The visitor is able to recall statements and feelings expressed in the past, assess the current state and make a judgement based on those facts. The person with Dementia is not. This does mean however that the resident is not able to receive information at all. It is likely that they are able to experience things “in the moment” even if they are not able to show it. For these reasons you want to create a meaningful experience.

YOU have the power to create a meaningful experience for the person you love. Typically a healthy brain weighs 3 pounds while a brain in late stage dementia weighs 1 pound. You can use the amazing potential of your 3 pound brain to compensate for the 2 pounds lost to Dementia and here is how…

Set the stage

• Greet with pleasure. A big smile goes a long. Be happy to be here! If a hug and a kiss has never been their thing, hold their hand, whisper how happy you are to see them.
• Expect no feedback: If you don’t expect it, you will not be disappointed.
• Chances are this is going to be hardest suggestion to follow through on. If so, just fake it! There may be opportunities for feedback but if you are obviously disappointed the chances of a positive response, or any response, are fewer.

Focus on the moment – not the past

• Be “in the moment”
  • Sit together – touch if you would like, hold hands, hug, etc.
  • Breathe deeply – Breathe in through your nose and out through your mouth and focus on your breathing
  • Experience this moment of togetherness –
    • Once focused, allow thoughts to come through without judgment.
    • Allow distractions to pass.
    • Use a word to focus on (Peace, mom, husband, love, forgiveness, etc.)
    • Enjoy the awareness and experience of togetherness!
• Keep the moments positive. If you want to talk about the past, by all means, do it! But focus on the things that your loved one finds meaningful.
• Do NOT remind them that they never wanted to live like this and talk about how sad it is. Why relive that when you can relive the amazing things that made them who they are.

Bring props

• Photographs are great, but the possibilities don’t end there. When cognitive ability and verbal communication diminishes it is helpful to bring things that are tangible.
• Bring a stuffed animal, ball (golf, baseball basketball, tennis ball), baseball glove, a map, different textured fabrics.
• Evoke the senses by bringing flowers, aromatherapy oils or their favorite food (if tolerated by diet).
• Be your own prop! Touch, hug, laugh.

Say all the things you never said

• This is the time to love, acknowledge and forgive.
  • Love – Tell them you love them and why. Share the times they helped you feel loved.
  • Acknowledge – Hard times are what shapes a person. It’s okay to acknowledge when things were rough, even the difficulty of this moment (Dementia). Acknowledge and elaborate on the positive moments. Example: “I know this is hard. You are doing an amazing job of handling things. I am grateful I can be here to share this with you. I love being in your presence…” It may be that you are just happy to be able to hold their hand – Tell Them!
  • Forgive – If possible, let go of heavy burdens you share. Forgive them and ask for forgiveness. Don’t wait for acceptance. They may not be able to respond, but if you offer it, you have lightened your load.
• Tell them what you learned from them that shaped you as a person
  • “Because of you I am a good” wife, worker, friend, etc.
  • Surely by this stage they have handled challenges, right? “In watching you I have learned to”….when faced with obstacles.
  • How did your loved one interact with others? Were they patient, funny, sarcastic, helpful, motivating, kind? How did that impact you? Share it!
  • Sometimes people don’t have positive memories to share. This can be challenging. Perhaps this made you treat your family in a more positive way. Share that! Also, this might be the time to acknowledge and forgive. If not for them, for you.
• Relive great moments by telling stories.
  • Start with “I remember…” rather than “Do you remember”
  • Use great detail and emotion
  • Have a hearty laugh – no one will judge you for having a one-sided conversation.
  • Relive that experience that imprinted on your memory.

Remind them of their importance

• “You are important”
• “You are loved”
• “You impact people around you”
• “You make a difference”
• Note that ALL examples are in the present. I am in the presence of people in late stage dementia all the time and they impact me every day. Each person makes me feel, contemplate and experience a moment. THEY MATTER!

For more tips on caregiving for late stage Dementia, Read more: www.alz.org