In April of 2018 my daughter, Sharmane and I experienced the privilege of attending the National Down Syndrome Society’s inspirational and educational First Annual Down Syndrome Adult Summit.
With Sharmane getting older, forty-four at the time of the conference and dementia prevalent in people with Down syndrome, we mainly attended lectures related to dementia and Alzheimer’s. A few speakers provided insight into the early symptoms of Alzheimer’s, which are different for people with Down syndrome as explained below. Others described best practices for dealing with those experiencing dementia, and one lecture offered suggestions for preserving memories.
This essay is intended to help the parents, family, friends, and caregivers of people with Down syndrome to recognize and navigate the turbulent world of dementia if you must enter that realm.
Pre-Diagnosis for Alzhemier’s in People with Down Syndrome
The first symptom of Alzheimer’s in the general population is a short-term loss of memory. For people with Down syndrome (hereinafter: DS) the first symptoms manifest differently, often seen as:
People with DS typically age 20 years faster than the general population. If a family has a history of developing Alzheimer’s at age 65, a person with DS in that family might develop Alzheimer’s around age 45. Alzheimer’s in NOT inevitable for people with DS. Recently, a person with DS lived to 83 years-of-age and never developed Alzheimer’s nor any form of dementia.
Current research shows that people with intellectual disabilities get Alzheimer’s at the same rate as the general population. Studies indicate 25% of the people with DS over 40 years-of-age develop Alzheimer’s. Once a person with DS is over 60 years-of-age the incidence of Alzheimer’s climbs to between 50 – 70% (Adel Herge, Helping People With Intellectual Disabilities and Dementia Live Life to the Fullest Seminar, 4/10/18 National Down Syndrome Society Conference).
Alzheimer’s can easily be misdiagnosed in people with DS as they are at a high risk for depression. The aforementioned three symptoms also present in people with DS who suffer from depression. In some cases the same three symptoms will present when a person with DS suffers from internal organ pain or if something disturbing has changed in the environment in which the person lives.
In order to correctly diagnose dementia the person being tested must have a baseline before the symptoms of dementia present themselves. DisDAT – Disability Distress Assessment Tool can be used to help determine the distress level for non-verbal disabled people. This tool helps caregivers track the moods and reactions of a non-verbal disabled person. This might be especially useful for an individual with multiple caregivers as it was develop in an institutional setting.
Post-Diagnosis for Alzheimer’s in People with Down Syndrome
Once a person with DS is diagnosed with Alzheimer’s a new plan of caregiving must be employed. The old methods will no longer work:
Adel Herge, OTD, OTR/L, FAOTA, Associate Professor & Director of the BSMS OT Program at Thomas Jefferson University in Philadelphia recommends the Triatic Model:
Person with Dementia
Caregiver Physical Environment
Three factors are continually interacting for a person with dementia when an issue develops. The caregiver must try to determine the root cause of the issue which can range from being thirsty to the person seeing a picture on the wall that triggers a traumatic memory. The caregiver must understand that people with dementia cannot process as much information as they did, nor can they process it as fast.
Three rules for dealing with people who have dementia:
Less is more – do not offer four options for activities today. Do you want to go for a walk in the park? If yes, go walk in the park. If no, proceed to option two, do you want to go to the library? If yes, go to the library. If no proceed to option three, do you want to…
Don’t argue with dementia – your sister’s dementia has progressed to where your parents can no longer care for her so she lives with you. One morning she asks, “Why have you forced me to leave home?” You reply, “Remember, mom and dad had to move into assisted living and they couldn’t look out for you. You agreed that living with me would be good and I’m so glad to have you here.” That is exactly the WRONG answer. The right answer doesn’t argue with dementia. “Before we discuss your home, would you like to have breakfast?” Everyone loves breakfast and by the time breakfast is over she is likely to be thinking about something else.
No doesn’t mean no – “Do you want to go to the park?” “No!” Do you want to go to the library?” “No! I don’t want to do anything!” “Ok.” People with dementia often do not say what they mean. You might ask if he or she feels alright, or wait fifteen minutes and then suggest something.
Be sure to take care of yourself. And relax the rules so that you can stay calm. If the person with dementia wants to walk in the afternoon instead of in the morning, walk in the afternoon. No, an afternoon walk doesn’t fit the schedule for that day, but the rules need to be relaxed.
Things that work when dealing with a person who has dementia:
Managing dementia day-to-day can be difficult. Ms. Herge offered these tips:
*Simplify communication – only offer one topic or question at a time. This gives the person the ability to process the information.
*Simplify tasks/daily routines – lay the clothes to be worn that day on the bed in the order the person should put them on.
*Enhance activity engagement – people with dementia do NOT initiate, so you will need to include the person. This tends to hold true even for activities the person enjoys.
Modify your environment to be safe
Hopefully these suggestions and the information presented here will help you recognize the signs of dementia in people with Down syndrome and care for that loved one if it develops. No cure exists for dementia so caregivers can only work with the afflicted person to make them safe, comfortable, and enjoying their lives given the new circumstances.
NOTE: I, Joe Rinaldo wrote this essay by compiling data heard at the National Down Syndrome Society Conference of 2018 in Washington, D.C. All the credit for the research and methods described herein belong to the cited sources. Many of the ideas mentioned here were stated by multiple speakers.
Adel Herge, OTD, OTR/L, FAOTA, Associate Professor & Director of the BSMS OT Program at Thomas Jefferson University in Philadelphia, Tips for Caregiving: Helping People with ID & Dementia Live Life to the Fullest
Kathy Service, RN, MS, FNP-BC, Healthy Aging
Elizabeth Bodien, Sister/Guardian, member of NTC & AADMD and Jane Boyle, 40+ years in non-profit strategic planning & fundraising, Sister, Creating & Sharing Life Stories
Dr. Seth Keller, M.D.-Neurologist, NTG-CO-Chair and Kathy Service, RN, MS, FNP-BC, Decline in Adults with Down Syndrome; Assessment and Care Considerations