Article

Frontline Initiative: Self-Care for DSPs

Dealing with Personal Stress, Guilt, and Anger When Supporting People with Dementia

Authors

Shelley Van Lare is a nurse educator at The Arc of Monroe, Rochester, NY. She can be reached at svanlare@arcmonroe.org.

Photo of a DSP supporting a woman who has demensia. The DSP is attempting to give the woman she is supporting medication.

Dementia not only affects the person with the condition, it affects all relationships in the person’s life. There are stresses in trying to maintain a normal routine, while coping with the day-to-day challenges the person with dementia presents. A great burden for support falls on you, the Direct Support Professional (DSP). Understanding the disease, its progression, and what the person’s future needs may be is important for DSPs in order to cope.

Throughout the course of the condition, DSPs are likely to experience anger and frustration directed at the person, themselves, team members, or the system itself. It all depends on the day and circumstances. Know that you are not alone in feeling anger. It is important to talk to and get support from trusted coworkers and supervisors concerning your frustrations and try to seek assistance. Remember, challenging behaviors the person displays are the dementia, not the person. Confusion and distress the person feels are pushing the actions and behaviors you see. The person with dementia has a different view of the world around them. They may be easily frightened or confused by it. People who have intellectual developmental disabilities (IDD) may have had some challenging behaviors before the onset of dementia. These may intensify with dementia.

Talk to staff who know the person with dementia well and identify something positive and interesting about them. Focus on remembering that when working with the person. The more you disagree or get frustrated with someone with dementia, the harder you need to work to put yourself in their shoes. It can be helpful to think about one of your family members in the situation. How you would want a DSP to approach your mom, dad, or other family member with dementia? Approach the person without an agenda, without prejudice, and without assuming a battle will ensue. Don’t force them to follow your agenda or a routine. For example, if it is dinner time, and you ask the person to come to the dining room to eat and they decline. Remind yourself that they may be frightened. They may no longer understand what you are requesting of them. When you find yourself in such a situation, try these general approaches when working with someone with dementia —

  • Walk away and give the person space.
  • Allow flexibility by offering meals, activities or medication later.
  • Assess whether the situation (e.g., being in the dining room, being with others) is too overwhelming. In that case, adjust routines (e.g., allow meals to be eaten earlier or later, in a quieter environment). Noise levels are very stressful for the person with dementia.
  • Stick to established routines, where possible. This brings structure into a confused life. If a person with dementia is forced to move to a different home due to safety issues, routines from the previous house should be carried to the new home when possible. Things like arranging bedroom furniture as closely as possible to the old layout can support this.
  • Make tasks simple. Limit the number of choices. As the disease progresses, you will want to offer fewer options. Too many choices can be overwhelming for the person.
  • Demonstrate tasks where you want the person to participate, such as hand washing or washing hair. Visuals, such as videos or pictures, can be helpful prompts for a person.
  • Make safety important. What wasn’t a hazard six months ago could be a hazard today. Observe and communicate changes that need tweaking in a person’s environment.
  • Exercise with the person. This helps maintain physical and mental abilities for a time and makes life more positive for everyone. Studies show that everyone benefits from brisk walking 40 minutes three to four times/week (you, the DSP too).
  • Make a plan to be able to “tap out” when you start feeling overwhelmed by supporting someone with dementia. Plan to have another DSP take over when you feel overwhelmed.

Importantly, take care of yourself! Here are some tips —

  • Keep track of what is important in your life outside of work.
  • Keep yourself healthy. Really, you’ll feel better about everything.
  • Share your feelings about being a DSP supporting a person with dementia. Consult with your supervisor or other DSPs to find positive solutions to the challenges you are facing.
  • Know your limits – It’s a good thing.
  • Don’t blame yourself, other DSPs, or the person with dementia for the challenges you are experiencing. Recognize it is the disease.
  • Remember how important your support is in the life of the person with dementia

The article was adapted and reprinted with permission from S. VanLare, (2018). Health tips: Dealing with personal stress, guilt, and anger when supporting people with dementia. Rochester, NY: The Arc of Monroe.

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