“I want to go home!” “Get me out of here!” “I need to leave!”
"Help me!" "Stop!"
These are some phrases sadly heard by family members, care partners, and friends of those with dementia. If not addressed and acknowledged, these repetitive phrases will often times lead to and escalate into more challenging situations and anxiety for all involved.
There is always a reason for what is being expressed. Understanding the verbal and non-verbal cues of the individual will help in managing their behavior and better understanding their needs. Communication is one of the biggest challenges for family members, care partners, and friends of those with cognitive impairments. So many people just do not know what to say or do! Suddenly they become nervous and do not know how to act in front of their loved one.
How can one address these behaviors and help to move things forward in a positive way for all involved? We have developed an approach below which can help you on the way to learning, understanding, forming meaningful connections, and communicating effectively with your loved one! It takes time, but it is very effective!
To begin, do not hesitate, but FACE the CHALLENGES head on!
The FACE APPROACH:
Focus: Focus on the feelings and emotions being conveyed. They may be feeling lonely, frustrated, bored, scared, anxious, or even excited thinking about home, lost family, or other aspects of the past. Some specifics of communication and redirection will depend upon what they are reflecting back to, either career, childhood, work, or time as a homemaker or mother. Try to connect and establish the time period and situation, then model communication around that area. Try to understand and tap into their mood and emotions along the way, as this will help to cue you to the next steps and direction you should take to have meaningful communication and engagement.
Approach: It is all about the approach. The approach makes all the difference and will effect the person. If the person becomes startled by movements, adapt and move at a slower pace. If a noise upsets them, reassure and adjust the noise level if possible. Always value personal space when approaching an individual as this is so important! Remember you would never want to come across as confrontational due to not valuing their space- think of how you would feel. Remember, however that your perception will not be theirs perhaps. They will perceive things differently and it is important to understand and adjust things based on their perceptions of reality and reactions. Adjust your approach to things when anxiety or behavioral triggers occur. If not working, take a break and then reproach later.
Acknowledge: Acknowledge all communication even if repetitive, as if ignored, it can lead to anxiety, sadness and frustration. All communication has a purpose in some way. Look at and take cues from facial expressions and general body language as it conveys a great deal about the person! Acknowledge feelings and intentions or offer help if the person is asking the same question over and over. Connect at their level and try to understand what is being conveyed on their part and then tap into that area or emotion. If redirection is needed talk about something that sparks a happy thought. or start a meaningful activity such as looking through a photo album or making a craft. Talk in general about the day, tell a story, or sing a familiar song softly to or with the person while doing tasks. Motion and rhythm can be great tools along with touch as physical connection, skin to skin contact through hand holding and even rocking can be of comfort. And sometimes merely the sound of your voice and knowing someone is there can be all it takes to create trust and comfort.
Connect, comfort and reassure: Trust is critical and needs to be frequently reestablished for those with cognitive impairment. Those with cognitive impairments can lose connections with others at times throughout the course of a day due to daily movement and activities. Remember again to always value an individuals personal space initially and when approaching them. Let them connect on their terms and provide simple, verbal cues to support this. Never come up behind an individual or surprise them. If acceptable approach from the side if sitting in a chair and slowly come to their level or if standing reach out in a welcoming, familiar manner while approaching and let them take your hand or arm. Monitor their reactions and let things progress and unfold on their terms. If the encounter is not positive or not received well you can always reproach at a later time. Do not be frustrated or disappointed. If positive hold their hand as making physical connections and having skin to skin contact can usually be of comfort. Give a soft pat or reach an arm around their back when talking or walking together. From birth we enjoy being surrounded in comfort, cuddled, this does not change and fosters security and a familiar feeling. Lightly rub their back or hand from time to time if they find this to be of comfort. Appropriate touch is often calming, soothing and the key to developing trust and again security. Make eye contact to let them know that you are listening and understand what they are saying. Reassure the person that you are there for them and that you understand. Sometimes explaining this can make them feel better. You may have to repeat this several times throughout the day in a variety of ways to reinforce and remind. Also if they leave the room or you are away from them for some time, they may forget who you are and why you are there. This can be very scary and lead to anxiety. Calmly start from scratch to reestablish the connection when away from the person and then move forward with connecting and forming their trust again.
Environment: Create and maintain a calm, consistent, structured, environment as much as possible. This will provide the individual with security, visual cueing, and lessen anxiety. Have a set, basic daily routine. Use soft, simple, relaxed, and gentle tones when speaking. Never rush! Those with cognitive impairments are very sensitive and pick up on stress, irritation, etc. Identify triggers for anxiety and issues. when possible. Most of the time something will prompt a change or cause frustration or other behavioral issues to begin. The time of the day, a noise, a change of routine, a change of environment, frustration over wanting to do something that they cannot do, discomfort that they cannot resolve, or something else that perhaps causes frustration, fear, anxiety can all trigger behavior issues. Try to be proactive and limit triggers when possible and redirect behavior when they occur. Observation, along with responding and supporting meaningful engagement and connections are key! Modifications along the way will be needed based on changes in their health and disease progression.
Some approaches to take and try for common repetitive phrases:
1. "I want to go home, I want to go away, I miss home."
“Of course you do!"
"I understand that you miss your home, can you tell me more about it ?" " I also loved the _____________ (the flowers, in the yard, etc)."
Acknowledge feelings and emotions! Tap into still intact memory. Give them a chance to talk about their home, family, find out more about what home feels like to them, what time period in their life it is, and help them to recreate that positive feeling from the past.
2. "I miss my daughter, my mom, my husband."
"Of course you do"
"I am so sorry that you are feeling this way."
“Tell me about when your daughter was born, our trip to the country, your wedding day, your mom's cooking, the holidays at home.”
Again acknowledge feelings, emotions and let them talk about a favorite memory to spark that positive feeling rather than a feeling of hopelessness or sadness.
3. "I want to leave." "Time to go." "I need to go."
"Why do you want to leave?"
“Everyone is planning to stay here this afternoon, so you won’t be alone.”
“I will be here with you, I am not leaving. I am really enjoying my time here with you. Where do you need to be, I can walk with you. You are always so busy, let's take the day off ”
Focus and connect with feelings and emotions being converted and then redirect the conversation along the way.
Help them to feel comfortable where they are and make time positive to them and secure.
4. Redirecting. phrases:
“Let’s take a walk in the garden, do some crafts, make a project for _______ or prepare a snack for everyone.”
Try to redirect the behavior and focus to an activity that they enjoy. Ask them to help you. Never pull someone or force them into a direction they do not want to go. Give space, reach out and let them connect with you on their terms. Offer our hand as touch is often powerful and comforting.
“ You are such a great worker, wife, daughter or mother; you always take time to help others. Could you help me organize these things? I really need your help. It is always better when you do it, I never seem to be able to do it right or the way you do, can you help with this? I just cannot seem to do this the way you do."
5. Every wants to have a purpose:
Ask them to assist in preparing simple aspects of a meal or snack, provide them with different colors of patch squares or papers to sort into piles, have them assist with sorting laundry with you.
Give them a purpose and help them to connect with something positive or feeling helpful again. Have them do what they can. Reinforce what they can do or what they do well.
6. Stay on track and encourage:
Focus and comment on their present abilities and achievements!
Find joy in the little things!
“ That is fabulous! I know you can do this. You always do this well.
“I really like the way you…..Wow, how did you do that? That is terrific! You look lovely today. You always look so nice. You dance so well! Could you teach me? You sing so beautifully. It makes me happy to hear you sing.”
Keep a positive and interactive focus always! Be realistic with your expectations and be patient. Never rush! Remember the focus is on them and how they are perceiving things. Connect with them on their level, on their terms, and move forward. This approach will work the best and help you to feel less frustrated at times too!
Source: Copyright, FAACE Approach to Dementia, 2014