Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association (alz.org/norcal) “Circle of Care” conference in Foster City. Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias. He also had the opportunity to attend a few of the break-out sessions. Here are his notes from the break-out session on “Care partner communication at all stages of dementia.”
Robin
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Steven’s Notes
Care Partner Communication at all Stages of Dementia
Session by: Alexandra Morris, Alzheimer’s Association
Alzheimer’s Association Circle of Care
December 2016
EARLY STAGE
In early stages, where the diagnosis may be mild cognitive impairment, the person may be able to adequately express his/her thoughts, participate in and make decisions about future care but may also misinterpret what others say. People at this stage will have difficulty finding words, participating in/following conversations and struggle with decision-making or problem solving. The care partner can connect with care recipient at this stage by using clear and straightforward sentences, leaving extra time for conversations (particularly responses), etc. Care partners should be especially careful to include the person in any conversation…related to future care decisions. Communicate in a manner that works best for the person (email, in-person, phone) and speak directly to him/her.
MID-STAGE
In mid-stage disease, language is reduced to basic words and sentences. The person receiving care is more likely to rely on tone of voice, facial expressions and body language to make a connection. At this stage, activities meaningful to the person with dementia are key to maintaining an emotional connection. Clues about cognitive changes include losing words (nouns go first), increasing trouble finding the right word and losing the train of thought or the thread of a conversation. Communication comes more through behaviors than words. Care partners can help by approaching from the front, saying who they are while calling the person receiving care by name. Care partners should move their level to match that of the care recipient, pay attention to tone of voice and take more time to let the conversation flow. Short sentences and basic words are best (one question at a time) and distractions should be limited. It is especially important to normalize experiences (for instance, if the care recipient is afraid, explain what is happening and show that you are not afraid).
Also at this stage, caregivers should join the care recipient’s reality. Keep respect and empathy in mind as you try to give the person multiple cues to help make and maintain a connection. Modeling behavior, keeping gestures fluid and overt (never sudden or coming from the side) repeating as necessary, avoiding “quizzing” about a topic and turning negatives into positives are great tools to help build trust. Writing things down, pointing them out or using photographs or pictures to convey meaning are also very helpful. One cue Ms. Morris mentioned is putting answers into your questions — “Would you like to wear the red shirt today?” As verbal communication begins to decline, try and asses the care recipient’s needs (pain, bathroom, hunger, temperature, fear, boredom). People with dementia only receive half the pain medication needed compared to functional adults. In addition people with dementia are almost never treated for breakthrough pain (the person with dementia struggles to express this need so the care partner will need to always be alert to checking pain levels and advocating for patient comfort. Let the person with dementia know you hear his/her concern whether through words, behavior or both.
LATE-STAGE
In late-stage disease, the care recipient uses body language and his or her five senses to make a connection. The person may still respond to familiar words, phrases, smells or songs. Pain is often chronic at this stage . If the care recipient is agitated, always check first for pain, then bathroom, food, temperature, etc. The care partner should reply in a similar manner using all five senses to make a connection:
Touch – feel different fabrics, identify shapes by touch, give lotion hand massages, identify items in a bag by touch, visit animals, sculpt, hold the person’s hand;
Sight – brightly colored pictures to look at together, photo albums, paint with watercolors, go bird watching, sit at an open window;
Sound – particularly music (and personally meaningful music-the movie Alive Inside shows this very movingly), traditional or native language music, poems, whistling, singing and humming are all helpful;
Smell – baking (cookies are always great), aromatherapy with essential oils, flowers, grass clippings, fragrant lotions for hand massages;
Taste – favorite foods, popsicles, flavored drinks, ice cream.
At all stages of disease the care partner needs to understand and accept what can’t be changed. The person receiving care retains a sense of self, despite the many losses caused by dementia. You are visiting their world — join them there to make a connection. Always treat the person as an adult, worthy of respect and empathy. Try and decode what need the person is trying to express and help meet that need with soothing and calming words and actions. Recognize the effects of our moods and actions on the person receiving our care.