Caring for Loved Ones with Intellectual and Developmental Disabilities and Dementia

Caring for a loved one with intellectual and development disabilities (IDD) already presents a unique set of challenges from those faced by most caregivers. When a loved one with IDD presents with changes in behavior, memory and sometimes mobility, those challenges are then joined with the challenges of being a dementia caregiver—and can often feel confusing, overwhelming and at times even too much to handle.

But this situation is one that many caregivers of loved ones with IDD face, particularly those caring for a loved one with Down syndrome. According to estimates, around 75 percent of individuals with Down syndrome aged 65 and older develop Alzheimer’s. This is due to the presence of an extra copy of chromosome 21, which carries a protein that often builds up and clumps in the brain, a common cause of Alzheimer’s. Individuals with Down syndrome also tend to experience aging in their brains at a faster rate than those without Down syndrome, which means they may develop Alzheimer’s at younger ages, such as in their late 40s or early 50s.

As a caregiver, it’s important to adapt the kind of care you provide to your loved one’s changing needs. However, one of the main challenges caregivers of loved ones with IDD face is recognizing these changes in the first place. After all, if your loved one has always had communication issues due to IDD, communication changes brought about by memory loss and dementia might not be as obvious, and you may struggle to notice anything has changed at all.

Recognizing your loved one’s changing needs—comparing “baseline” and current abilities

Every case of dementia is different from person to person. There are common symptoms that people tend to experience—confusion, behavior changes, difficulty following instructions, difficulty choosing words—but every person experiences the disease in different ways. Therefore, it’s important as a caregiver to understand your loved one’s experience, so you know what symptoms they need help with the most and how to adapt your caregiving to your loved one’s needs.

When considering how dementia affects a loved one with IDD, it’s important to understand their “baseline.” In healthcare, the “baseline” is the initial state of your loved one’s health, abilities and functioning. So, for example, if your loved one has always been a gifted reader but struggles with emotional and social cues, this would be their baseline. When identifying the effects of dementia, you want to look for changes in their current abilities in comparison to the baseline, even if these changes are subtle. Using the earlier example, if your loved one is having increased difficulty reading or enjoying books and becomes even more likely to act inappropriately in social situations, these are changes that need your attention. Even if your loved one always had difficulties in a certain area, the new increase in difficulty is something that should not be ignored.

Tips for caregivers

When caring for your loved one, here are some tips to keep in mind:

• Keep your existing routines consistent as much as possible. Your loved one may become confused or stressed if you suddenly change things after they’ve started to show signs of dementia or changes in behavior
• Avoid overstimulating your loved one. Crowds, loud noises and anything that overwhelms the senses can be stressful for individuals with IDD, and the effect can be even greater with dementia. Consider looking into creating a “sensory room” in your home where your loved one can go to calm down and process their emotions
• Adapt your styles of communication—in particular, avoid providing too many options, use simple phrasing and give your loved one time to respond
• Remember that your loved one is not deliberately changing their behavior, and keep your emotional responses to them in check
• Use assistive devices, story and communication boards and visual schedules that give your loved one reminders about tasks and activities throughout the day. Many of these products can be purchased online or in specialty stores for older adults
• Reach out to family, friends and service providers, and continue building and maintaining a community of support to help care for your loved one’s changing needs

Resources for IDD and dementia

For additional information and support for your loved one, look into the following resources:

• Alzheimer’s Disease and Down Syndrome: A Practical Guidebook for Caregivers, an information-rich resource for caregivers by the National Down Syndrome Society. This resource is also available in Spanish.
• The Alzheimer’s Disease in People with Down Syndrome fact sheet published by the National Institute on Aging.
• The Alzheimer’s Association
• Your local Area Agency on Aging, which can provide referrals to services and programs available in your area.
• Your local Board of Developmental Disabilities, which can provide specialized services or referrals to supports available in your area. There may be new initiatives or programming that can help your situation. 
• Dementia Friends USA. These informational sessions provide valuable education on dementia, communication and understanding changes in your loved one’s memory.
• WeCare…Because You Do. This care-coaching program supports caregivers of older adults with chronic conditions, including IDD. A WeCare Care Consultant can help you connect with local services, prioritize your concerns, plan for the future and communicate more effectively with your loved one.

This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.