How Do We Face The Scary Truth? Down Syndrome and Dementia: A Caregiving Issue That Needs Our Attention

By: Stephanie Holland

Parenting on The Road We've Shared

Parenting, of all kinds, requires hard work and determination. We all want the best for our children and try not to let what might go wrong keep us from living our best today.


Sometimes, we need to put our own discomfort aside. Alzheimer’s disease is affecting record numbers of families, and a disproportionate percentage of the Down syndrome community will continue to be affected. We have seen an increase in attention being paid to research for a cure. We also need increase our efforts to support families that are facing caregiving for loved ones with dementia and other medical conditions that typically occur in adults with Down syndrome.

Positive Parenting

In order to be good parents, we focus on ability rather than limitations. We set high expectations for our children, with or without designer genes.We focus on the positive.Every now and then, we also have to consider the not so positive. We buy insurance… just in case. We may not want to, but we consider things like writing a will, financial planning, and special needs trusts.

We teach our children to be as independent as possible.

Then, we hope for the best.

Stages

Life comes to us in stages, early childhood, school age, and adolescence are the topics of many parenting resources. We transition with our children, changing our focus to meet our current needs. We don’t concentrate on learning how to deal with dating issues when our child is learning to walk. Sure, we try to stay a step ahead, but some topics are just, as the tweens say, “TMI” (too much information). Aging is a difficult topic. We don’t like to think about ourselves being negatively affected by father time, let alone our children. In the Down syndrome community, it’s the least talked about stage of life. We all know the main reason, our children are living longer now than ever before. There just isn’t as much information out there. Pressure to stay positive about Down syndrome limits the spaces where we can have honest, open discussions about caring for our adult and aging children.But think about that – our children are LIVING LONGER. Yes, there may be bumps in the road but it’s up to us to learn how to best support them, however uncomfortable it may be for us.

Truth: There are several medical issues identified as common among aging adults who have Down syndrome.

The “A” word

The most difficult for parents to think about may be Alzheimer’s disease. Our children have sometimes worked hard to gain skills and learn throughout their lives. We’ve worked hard to support them. This horrible disease can take all of that away. No wonder we don’t want to think about it being a possibility. We lean more towards denial than we like to admit. The problem with that is it can leave us ill-prepared.Those of us with adult children have had to face many issues that needed systems change in addition to hard work within our family and community. We were told “No, your child can not attend school,” or “the only program we have in this area is located in our special school,” or even, “the best placement for your child is our special room, they’ve had great results from children like these.” We understands how it “it’s always been done this way,” works.We can’t do it alone. Change takes time. We need to start now.

Learn From Others

A recent article published in The Irish Times tells one family’s story of Down syndrome and dementia. It starts with the heartbreaking fact that Bridget Connolly died at the age of 50. It goes on to give some sobering statistics for Ireland, and some sound advice for all who are involved in caregiving.

The College of Psychiatrists of Ireland recommends that every service for people with ID should have a plan for the recognition and management of dementia in people with ID, and that this population should undergo baseline screening and regular repeat assessments.

 “…access very much depending on geography.”

Baseline screening and regular assessments for dementia are not typical in the U.S. either. Access to care and especially specialized care, is a huge problem here as well.

Unlike the general population, dementia in someone with an ID or Down syndrome can be more difficult to detect and the subtle changes in someone’s cognitive ability may go unnoticed until all of a sudden there is a dramatic decline in their condition, he says.

“Then you have a family who are suddenly being called on to care for someone with huge support needs.”

Did you know that a new Down syndrome-specific cognitive test battery has been developed?  The Arizona Cognitive Test Battery (ACTB) is better suited for people with Down syndrome than the old cognitive tests.  Researchers are hopeful that the tests will help pin-point changes in cognition that occur during the course of Alzheimer’s.Have you thought about continuity of care? 

“People with dementia who have Down syndrome should be supported to remain in the home of their choice with the family and friends that they know. Relationship-based care is absolutely key.

“We need to make greater efforts in ensuring those long-standing relationships are maintained,” she said.

We need to consider the current care options and talk about how to improve them. It’s something that will take planning on many levels; around kitchen tables, in board rooms and possibly even legislative offices.
There is work to be done. Families need help and support now. We can take some of the suggestions in this article (and others) to begin the conversations, or get motivated to find existing ones.It’s not a happy topic, but it is real. Together, we can make positive changes and help today’s patients and tomorrow’s.

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