For Adults with IDD and Dementia, Maintain a Regular Daily Routine

[This is Part 3 of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 2 focuses on communication tips for caregivers who work with adults living with IDD and dementia. This part focuses on how to deal with behavioral symptoms of dementia.]

When it comes to caring for adults living with intellectual and developmental disabilities (IDD) plus dementia, the importance of maintaining a daily routine cannot be underestimated. 

A guide from the Administration for Community Living tells the story of a respite worker who was helping care for a 58-year-old man with Down syndrome and dementia. During each visit, she would try to help him out of bed and get dressed. But he would become upset, refuse to get out of bed, and yell at her to go away. 

His mother reported that on the days the respite caregiver was not there, she had no trouble helping the individual get out of bed. When the respite worker asked the mother about her routine, she learned that the mother would play a wind-up music box on her son’s dresser before he woke. 

She would also hum or sing softly with the music as he woke up. Then she would talk about the day ahead and the weather. When the respite worker tried this same routine the next morning, she was able to help him get out of bed. For once, he did not get upset with her and he did not refuse to get out of bed. 

The takeaway? Don’t forget that family members can be resources. It made all the difference to ask the mother what worked for her. By replicating the mother’s routine, the respite worker succeeded in learning from the mother and increasing the man’s level of comfort with getting out of bed and getting dressed with the respite worker’s help.

Promoting structure and consistency can be a useful strategy for minimizing or managing the behavioral changes in adults with IDD living with dementia.  

Here are a few tips to reduce behavioral symptoms in people living with IDD and dementia:

  • Anticipate what the person will need based on what you know about their daily routine, family members, likes and dislikes, and any significant or traumatic life events.
  • Maintain as regular a routine as possible. This applies to the person’s sleep/waking schedule, mealtimes, and daily personal care activities.
  • Be on the lookout so you can recognize any discomfort or if they look uneasy. Is the person hungry or cold? Does he need to use the bathroom or have another physical need? 
  • Watch for and try to resolve signs of boredom, fear, uncertainty, or fatigue. Irritability, fidgeting, or pacing might tip you off that something is awry.
  • Select meaningful activities that reinforce a person’s sense of identity and purpose.

Learn more:

Dementia Evaluation and Care in Adults with IDD

IDD and Dementia Strategy Guide
Alzheimer’s Association: Stages and Behaviors






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