by Pam Leonard, LBSW, CDP
Many caregivers find the journey of caring for someone with dementia grows increasingly isolating over time. Often friends and loved ones are unsure how to connect with someone with dementia and the old ways of sharing time together may no longer be possible. Because this can be uncomfortable, they sometimes stop visiting altogether, leaving caregivers and people living with the disease lonely. It is helpful to learn strategies for connecting with people living with various forms of dementia and to recognize that the "right" approach may change as the disease progresses.
In the first stage it is important to:
-Learn as much as you can about the person’s past, even if this information has to come from a family member. This allows you to bring up subjects that interest the person or accomplishments of which they may be proud.
-Share a humorous story. It lightens the mood and allows everyone to relax.
-Validate their feelings if they need to talk about being diagnosed with dementia, but let them bring it up. At times, they will have forgotten they have been diagnosed.
-Expect them to lose their train of thought mid-story. Smile, nod and pretend their story makes perfect sense. Don’t ask them to clarify it, as this may cause them to become frustrated.
-It is always safe to start with open-ended questions rather than questions that lead to “yes” or “no” answers. This may lead the person to share more about themselves naturally.
In the second stage a person may forget that they were once a doctor or where they went to school. Adjust your approach by remembering that:
-Physical touch is important, but it’s also important to ask permission before initiating a hug. Unannounced physical contact can be startling.
-Small talk is ok, and it is ok to talk about yourself. Leave space for them to respond when able.
-Engage the person in an activity that does not require communication.
-Listen to where they are in that particular moment. Are they a child waiting for their parents to pick them up? A husband waiting for his wife? Be with them in whatever they are experiencing, and don’t remind them who has passed away.
-At this stage, initiating conversation is more challenging for them, and there will be times when they do not respond at all. If one approach to conversation doesn’t work, don’t be afraid to try a different subject – or try again later when they are more alert.
The end stage of dementia is the most challenging time in terms of communication, and you may not be able to tell whether or not you are making a connection. Be aware that:
-At this stage, the person may respond to touch; singing; pleasant scents; tactile objects such as blankets, fidget mats or soft items; smiles; and a pleasant tone of voice
-Peripheral vision may be gone at this point, so be sure you are in the person’s direct line of vision.
-Avoid questions that require a response; instead, discuss what’s going on in the room or discuss the person’s past interests or hobbies.
-In the world of dementia care, it’s often said that the person “may not remember you, but they may remember how you made them feel.” We do not give up on trying to engage with people in their final stages, even though we don’t know how many of their feelings and emotions are at work as they decline. Just because they cannot share their thoughts and feelings with us does not mean they are not experiencing them.
CJFS offers a free monthly support group for caregivers of people with dementia. The group meets the 3rd Thursday of every month from 1-2pm, and all are welcome. The Licensed Clinical Social Workers of CJFS also provide individual and family counseling for people of all ages and income levels. Contact Stu Jaffe at email@example.com or 205.879.3438.
Pam Leonard is program director for CJFS CARES, an engaging respite program for those affected by memory and movement disorders. To learn about CARES, contact firstname.lastname@example.org or 205.960.3411.