‘Experiencing brain change’: Keep connections meaningful as loved ones age

By Sarah Randolph

Family members and friends of people with dementia often struggle to have a rich and meaningful conversation. A mindset shift and a few tips can change this and result in an enjoyable experience with someone you care about.

To avoid promoting a stigma, there is a movement among caregivers and professionals to change the way we think and talk about people with dementia. We now say this person is “experiencing brain change.” This aligns what the person is experiencing with the reality that dementia is a progressive illness requiring constant adjustments. Because the person already is working hard to process confusing information, it is up to the family member or friend to carry the conversational load and make any necessary adjustments. Here are some tips to help:

• Normalize their feelings. About half of people experiencing this brain change are at least partially aware of it. Don’t chastise if they forget something. Mention that you also forget things. Listen actively, follow their lead or introduce a pleasurable memory to talk about. Long-term memories can be surprisingly intact and richly detailed for people experiencing brain change. If you don’t know what to talk about, consider these easy topics: weather, pets, children and food.
• Seek quality of time together rather than quantity. Experiencing brain change is exhausting. The energy it takes to order a confusing and frustrating world is immense. Many people will “perform” for others, trying to compensate for any deficit they feel they may exhibit. Short, frequent visits may be better than lengthy ones. Some times of the day can be better for people who experience sun-downing, behavioral changes that occur in the late afternoon or evening. Planning your visits for their best time of the day will lead to a richer experience for both of you.
• Simplify visits. Use music or going outside to connect and give you topics of conversation. Touch is also a kind, simple way to connect. Make sure to ask permission and slowly explain that you would like to hold their hand or pat their shoulder before doing so. Demonstrate on yourself what you are going to do before you do it and look them in the eyes. Most people experiencing brain change are comforted by touch. They wish to connect with their world and this is a concrete way to do that.
• Do not test, challenge or contradict the person you are visiting. People with brain change are not necessarily experiencing reality in the same way. Due to nerve cell death and tissue loss in their brain, they may be unable to come into the world as you know it. Don’t make this a test to see “if they are still in there.” It is your responsibility to go into theirs. Some seemingly silly observations or comments will lead to laughter and connection if accepted openly and non-judgmentally.

The Alzheimer’s Association has extensive training promoting the “therapeutic response,” which the association describes as one that relieves the person’s confusion or anxiety and keeps their sense of dignity and worth intact. The association promotes finding the emotional truth of the situation. The person may have an emotional unmet need to be supported, heard and validated. This response is not a lie, it is a response which meets the needs of the individual you are with. This technique does feel awkward and untrue but the more opportunities you have to practice it, the more comfortable it becomes. This is especially rewarding when you see your responses allow the person to relax rather than become agitated.

I know a woman who often sees dogs in the room when there aren’t any and we talk about how much those dogs love her and follow her wherever she goes. Most of the time these hallucinations are welcome, but on the days (or time of day) they are not, I promise to call the Animal Control to come get them. Commonly, a person may be seeking their home (even if they are in it) or their car because they wish to drive somewhere, forgetting it would not be safe. Rather than contradicting them, it may work better to try a therapeutic response or moving to a different topic. If the first therapeutic response does not work, try another one. If one does work, use it again.

And, remember to give yourself a break. Visiting with someone experiencing brain change is a form of care giving and provides much needed emotional and mental support for them. Even a short visit could require a lot from you as you focus on responding to the person’s needs and creating a satisfying interaction. Think of something to replenish your own energy before you visit with your loved one or friend again. With a caring approach, conversations with those experiencing brain change can be rewarding and humor-filled.

Sarah Randolph, who is a board member of the Senior Resource Center for Douglas County, has worked for many years on behalf of people who have dementia and their families.