Patience when caring for someone living with dementia

Patience is crucial when caring for someone living with dementia.  Often times the burden of care falls uneven on a spouse or a child who lives close to their parents.  It takes us a while, if at all, to realize that it takes more than one person to support another living with dementia.

When an interaction is not going as planned, we suggest the following steps:

1.) Step Back: It is okay to not have an immediate response.  Think before you react and ensure your facial and body language matches your words.  We want to make sure we are engaging visual stimuli before offering a verbal message.  As Teepa Snow suggests, engage the senses by offering cues in the following sequence: visual, verbal, touch.

If the person living with dementia is doing an undesirable activity, consider if the activity is dangerous to them or others.  If it is not, reassess the urgency of change.  Could this be a moment for connection?

2.) Respond instead of Reacting: A thorough response requires doing the analysis to see why we seek to change the current behavior.  Are we imposing our logic on their situation?  Could it be that we are not taking the time to enter their reality?  This can be a mentally draining task and is one of the reasons why caregivers become frustrated with the person entrusted in their care.

Sometimes we are not trying to correct a behavior, but rather a narrative.  A person living with dementia might be time traveling or experiencing a hallucination.  Instead of trying to reorient them to reality, take that time to ask them questions about their past or their visions.  Often times we can find our best moments of connection by patiently requesting that they tell us more.

Throughout our response, we want to incorporate the art of substitution before subtraction.  If we want to remove something from their hands, offer them something else to hold first.  If we want to free them from a hallucination, ask more questions.  Often times they will reach a point where their mind no longer can describe the often that does not exist.

3.) Make plans, but expect them to change: Put your agenda in your back pocket.  It is often very difficult for non-caregivers to understand why it takes so long to accomplish the activities of daily living.  Why does it take an hour to take a shower?  Why does it take two sittings to finish a meal?

Our approach matters, and unlike caring for a child, an older adult has lived a long life and is used to be being treated with dignity and respect.  Although their memories may have faded, these feelings of pride are deeply engrained.  We need to go with their flow, not the other way around.  We need to take extra measures that may not seem “logical” in order to satisfy their emotional needs.

A classic example of this would be wrapping a towel around the care recipient in the shower.  Although this might make the cleaning process more challenging, it allows the person being showered to feel less exposed to caregiver.

4.) Figure out what you can and cannot control:   We need to remember that activities are a means to connect with the person living with dementia.  If we are playing a known game, it is okay to throw out the rules.  For example, instead of playing a card game, why not sort the deck?  As the disease progresses, your loved one might derive more comfort from holding items versus sorting them.  This is okay.  We are learning to adapt to their changing senses and using these to find new ways to say hello.  If you are unfamiliar with GEM levels, learn more here.

Here are some ideas for activities for someone living with dementia.  At NursePartners, we provide activity baskets to our clients living with dementia.  These typically include coloring, puzzles, and cards.  Activities are introduced and rotated out as interests or abilities change.

5.) Take care of yourself: We impose our logic on the person living with dementia, but fail to apply it to ourselves.  No matter how much help you have, you also need a break!  Caring for a person living with dementia can be a daunting task.  If you are emotionally drained or physically inept to perform your role, you become less helpful for the person needing your care.  It is not selfish, but rather essential, to take time to enjoy your life and keep yourself healthy.  

Please ask us for more support resources.  NursePartners is a founding member of the National Aging in Place Council of Philadelphia.  We invest our time in this organization in order to comfortably refer you to resources in our community, some of which are free.

This article was inspired by Teepa Snow and a post by AgingCare.com.