CareNotes

Not Everyone Living With Dementia Is 75+

Christy Turner is the founder of CTC Dementia Care Management and a featured presenter at the OHCA Spring Expo. In this blog post, Christy addresses issues related to younger patients with dementia.

In her Spring Expo presentation “People Living with Dementia Aren’t All 75+: Working with the Young-Onset Population,” she will expand upon this topic to offer practical solutions for communities who are seeing a younger resident population. 

Join Christy Turner at the OHCA Spring Expo, March 3-4, in Eugene, Oregon. If you haven’t already, take the time to register for the Spring Expo.

After earning a master’s degree, Sarah launched her dream career. Within a couple of years, her life looked exactly as she’d always envisioned. She was leading a team at work. She’d purchased a home she really enjoyed, with a sloping backyard and cascading flower beds. She went on hikes with her photography group almost every weekend, looking for off-the-beaten-path shots. She became a gourmet cook. She fell in love. Life was as good as it could possibly get.

But unexpectedly, Sarah was diagnosed with early-onset Alzheimer’s disease. She was 48. Her partner loved her, but couldn’t see marrying her anymore. She lost her job. Her parents became her primary caregivers, all of them feeling frustrated, as if she was a teenager again.

Sarah’s parents asked the questions that long term care professionals are also asking with the younger populations residing in their communities:

• How do you manage an independent, active, highly-educated 48 year-old woman with rapidly deteriorating safety awareness and judgment in otherwise peak physical condition?
• How do you persuade her not to drive?
• How do you convince her that she can’t use the stove anymore because of that incident with forgetting the copper pan and literally liquefying it?
• How do you explain that nature hikes require a buddy system?
• How do you make sure she’s taking her birth control?
• What about when she forgets how to use a tampon? What about the fact that she wears contacts?
• How should we respond when she calls us screaming, accusing us of hacking her computer because she can’t remember how to work it anymore?
• How do you convince her she needs help?

These are important questions, and Sarah’s life illustrates many of the issues we don’t often think of when caring for older adults living with dementia. And yet, this younger population is growing, and two-thirds of them have a non-Alzheimer’s disease cause of dementia. We as professionals need to be prepared for the growing demand for services, clear about the difference in needs caused by both the type of dementia and the age group. My question is, are we truly ready to provide the care Gen X needs?

Here are a couple of things to keep in mind when looking to serve this population:

1. A traditional memory care neighborhood is going to look and feel like a visit to the grandparents for an Xer. Be prepared with generationally appropriate leisure programming; this may include independent pursuits, as a good chunk of Xers grew up as latch-key kids. Consider a VCR and Walkman, which are easier for a younger resident to remember how to use. And of course don’t forget the classic movies and music of the 80s and 90s.
2. Most of this population was working when they were diagnosed, so be prepared to offer your new resident some type of job. This will assist with full integration in your community.
3. Young residents have a different frame of reference than your older adult residents; they view you (the staff) as their equals. You are not necessarily an authority figure to them…just ask a med tech!