Supporting People as the Age

What Direct Support Professionals Need to Know about Supporting People Who Experience IDD and Dementia

Author

Lisa Burck , MPA, MEd, DSPIII, is the Associate Director of The Arc of Mississippi and a DSP cheerleader. Lisa can be reached at lisa@arcms.org

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Two women working in a coffee shop working at the counter. The woman on the right is pointing to something on the computer screen, explaining something to the woman (Beth) on the left. The woman on the left has down syndrome.

DSP reminding Beth about how to take customers coffee orders.

The important work that you do as a direct support professional is complex and ever-changing. Often, you may be the person who knows someone better than anyone else. Then one day, they are different. The supports and interventions you used before are no longer as successful. Something is going on, and you may be the first person in their life to notice and have an idea of what is happening.

While people who experience intellectual and developmental disability (IDD) in general have a five times greater chance of also acquiring dementia as they age, it’s among people with Down syndrome where you will see the greatest numbers. It isn’t because dementia is getting worse for people with Down syndrome (DS); it’s because people with DS are now living long enough for us to see dementia’s impact.

The person you support is still the same unique person you’ve come to know, but the supports you provide will change, and then change some more as the disease progresses.

Did you know that 100 years ago, the average life expectancy for a person born with DS was age 9? 50 years later, it was age 15. Now, after another 50 years, and into the present, people with DS are living into their 60s and 70s (Iulita et al., 2022). DS is a genetic disorder caused by an extra 21st chromosome. Most people have two of these chromosomes; people living with DS have three. Unfortunately, this is the same chromosome that produces a protein that is necessary for the formation of Alzheimer’s (Lott & Head, 2019). Though there are different forms of dementia, for people with DS, the most common type of dementia is Alzheimer’s. By the time people with DS reach the age of 40, evidence of Alzheimer’s is already in their brains, though they may not yet have symptoms. Some will never have symptoms in their lifetime. Others may already have symptoms in their 30s, and about half will develop symptoms in their 50s. The numbers grow from there.

Lisa is smiling at the camera. She has reddish-blonde shoulder length hair, glasses and is wearing a coral pink blouse. She has on a gold chain necklace with a gold locket.

Lisa Burck

If you know someone with Alzheimer’s, it often starts with memory lapses, but for people with DS, it begins with changes in behavior. Other symptoms develop and worsen over time. Alzheimer’s is sorted into Early, Middle, and Advanced stages. These stages can overlap. How and how much you support a person will need to be adjusted as their symptoms change.

Generally, people who have Alzheimer’s are typically cared for by children and grandchildren. This is different for people who experience Down syndrome, who are often still cared for by their aging parents. They may be living with dementia themselves.

Direct support professionals have an invaluable role throughout the process of identifying the risk, recognizing the symptoms, helping medical professionals understand the person you know so well, and supporting them in a way that adapts to the situation. Unfortunately, high turnover rates in the direct support profession can mean changes in health and behavior may be missed or misdiagnosed.

Three women are in a yoga studio. The woman (Beth) in the center is setting on yoga matt, sitting up, with her right leg straight and the left leg bent. Her right elbow is on her left knee, and her hand is pointing up while her body and head is turned to her left. She has down syndrome. Another woman is kneeing behind her, touching her left shoulder and her back to ensure the correct position. The other woman is the background is in the same pose as the women participating in the exercise. All three women are in yoga pants and tops.

Beth stays active with the support from DSP.

The person you support is still the same unique person you’ve come to know, but the support you provide will change, and then change some more as the disease progresses. Here are some important tips to think about.

  1. Keep good records about their gifts and abilities. This information can be useful to look at as the disease progresses.
  2. Alzheimer’s should be the final diagnosis, not the first assumption. Other conditions can cause similar symptoms, such as urinary tract infections, strokes, illness, depression, or too many medications.
  3. The people we support are at an advantage when they are already in a long-term support system. Systems should adapt to accommodate the changes that take place in a person with Alzheimer’s.
  4. Alzheimer’s is not their fault!
  5. Don’t argue with a person with Alzheimer’s; you won’t win. Be agreeable, sensitive, and compassionate.
  6. Avoid negative words and body language.
  7. Simplify their environment. Make sure it is calm and consistent.
  8. Encourage the person to participate as much as possible in their own care.
  9. Make eye contact, touch gently, speak in soft tones.
  10. Educate yourself about IDD and dementia. There is much to learn!

Remember, the quality of a person’s day depends on who walks through the door and their commitment to the person they support. That’s you!

For more information, the National Down Syndrome Society has an excellent guidebook for supporting someone with Alzheimer’s.

References

Iulita, M.F., Chavez, DG, Christensen, M.K . . . (2022). Association of Alzheimer Disease with Life Expectancy in People with Down Syndrome. JAMA Network Open. 5(5). 10.1001/jamanetworkopen.2022.12910

Lott, I.T. & Head, E. (2019). Dementia in Down syndrome: unique insights for Alzheimer’s disease research. Nature Reviews Neurology 15(3), 135-147. 10.1038/s41582-018-0132-6

Resources

Alzheimer’s Disease and Down Syndrome – A Practical Guidebook for Caregivers. NDSS.org. 2023.

Down’s Syndrome and Alzheimer’s disease: a review – C. Oliver and A.J. Holland, Psychological Medicine 1986.

The Link between Alzheimer’s Disease and Down Syndrome. A Historical Perspective – Salehi, Ashford, and Mufson, HHS. 2016.

Approach to providing care for aging adults with intellectual and developmental disabilities, Lougheed Canadian Family Physician- 2019

Supporting adults with intellectual and developmental disabilities to cope and thrive through transitions to later-life phases. – Sullivan, Heng, Abells, Perry Henze. Canadian Family Physician – 2019

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans - Watchman, Janicki, American Journal of Alzheimer’s Disease and Other Dementias. 2017

The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities – Moran, Rafii, Keller, Singh, Janicki. Mayo Clinic 2013.

Dementia in Down syndrome: unique insights for Alzheimer’s disease research. Lott, Head. Nature Reviews Neurology. 2019.

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