Caring for someone with Down syndrome and dementia? Now there’s a support group just for you

Two people with Down syndrome

By Alison Koop

If someone you love lives with Down syndrome, you may already know that they’re at an increased risk for developing dementia. Maybe your child, sibling or friend has been diagnosed with Alzheimer’s disease and you’re having to adjust to a new normal. Perhaps you’ve noticed changes in their memory, abilities or behavior that concern or puzzle you. You don’t have to travel this road alone. If you need practical advice or want someone to talk to, the Alzheimer’s Association Washington State Chapter is starting a free support group for caregivers of people living with Down syndrome and dementia.

Why a support group just for caregivers of people with Down syndrome and dementia?

Your experience as a caregiver differs from other families impacted by dementia. According to the National Down syndrome Society, people with Down syndrome develop dementia at a younger age — 30 percent in their 50s, up to 50 percent by their 60s. (The same extra chromosome that causes Down syndrome provides an “extra helping” of plaques that build up and damage the brain). Dementia may also progress more quickly for individuals with Down syndrome. As a caregiver, you may have little time to adjust to changing care needs, let alone time to mourn the loss of hard-won abilities. Your loved one may be aware of changes, but be unable to describe them to you.

Getting a clear medical diagnosis can also be difficult because standard cognitive tests for dementia may not be appropriate or helpful for people living with Down syndrome. In addition to this, relatively few medical specialists have training in working with people with intellectual disabilities including Down syndrome. It may also be difficult to find housing options for your loved one, as many residential care facilities will not accept people with intellectual disabilities.

While some of the challenges you’ll face are similar to other dementia caregivers, there are also some that are unique to this community. These are just a few reasons you may find it helpful to join a group specifically for caregivers of people with Down syndrome and dementia.

How will joining a support group benefit me?

Simply getting together with others sharing the same concerns and experiences can be an emotional boost to a caregiver. A support group is not a group therapy session, but members do lend each other emotional support. It’s a place to share knowledge too, such as how to navigate government services for people with Down syndrome and Alzheimer’s or helping other caregivers recognize signs of treatable medical conditions — urinary tract infections, depression or thyroid deficiency, for example — that could be mistaken for advancing dementia.

A support group is also a source of practical advice, from physician recommendations to how to meet an individual’s urge to wander. In short, a support group is a sounding board where you can ask questions or get suggestions from other caregivers. There is a lot to learn and a lot of responsibility to bear as a caregiver: it’s our hope that this support group will ease your stress and provide you with useful information and tools for your caregiving journey.

How does a support group work?

This new group will be open to family caregivers only. It’s free, private and confidential, in a casual, come-as-you-are atmosphere. Topics of discussion are driven by the group. Like all support groups we offer, it will be led by a professionally-trained facilitator. This ensures discussion doesn’t stray from the purpose of the group and everybody has a voice. Starting in January 2019, the group will meet in the Lynnwood office on the third Wednesday of every month from 11:30 a.m. to 1:00 p.m.

Why offered by the Alzheimer’s Association?

The Alzheimer’s Association is a natural choice to offer a support group for caregivers of individuals with Down syndrome and dementia. As the leading voluntary health organization in Alzheimer’s care, support and research, we have expertise in providing education, services and support to this community. We also have a strong track record in hosting successful support groups across the country. The new support group for family caregivers of people with Down syndrome and dementia in Washington will be one of the first few in the nation.

How do I join?

To learn more about this support group or for information about how to join, contact the Group Facilitator, Hannah Wishnek, at (206) 529-3888.

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