Guide does not provide respite care benefits for patients with mild dementia

nedmondson · August 5

My husband has mild dementia, and I am his caregiver. Recently, I applied for the Guide program because I was interested in the respite care benefit. I was approved, but it was only in the onboarding meeting that I learned that the respite care benefit is only available for patients with moderate dementia. I was pretty upset that I wasted time applying only to learn that the one benefit I needed would be denied.

After I was denied, I went back through the program documentation to find out how they determine dementia levels. I also wanted to see if Medicare included that the moderate dementia requirement is necessary to qualify for the respite benefit. I could find nothing.

I’m going to share my experience with my Alzheimer’s support group, and I’m posting my experience here in hopes it will help other caregivers.

SusanB-dil · August 5

Thank you for posting your experience.

I realize that a lot of doctors go by a 3 or 5-level system. Usually on this forum, the 7-level DBAT is by far way more helpful for most of us.

fesk · August 6

What benefits are they providing with your husband at the mild stage?

harshedbuzz · August 6

@nedmondson

I'm sorry you were disappointed by the offerings in the earlier stages.

I wonder if your local team is implementing this practice to focus on those who've been caregiving longer and/or can't leave their PWD home alone at all. In the mild stages, many PWD are still living alone with family support or are still Ok home alone for a few hours.

This leads me to question whether, perhaps, your DH is further along in the disease process than you feel he is. Sometimes loving family see their PWD with rose-tinted lenses focusing on how they present on a good day when everything is as they expect. My mom and I used to disagree of where dad was in terms of symptoms with her framing things as "he's choosing not to" vs "he can't independently anymore".

HB

WIGO23 · August 8

I had the same experience with Guide. So far, their “services” are pretty lackluster. Another time when what you really need isn’t covered. Reminds me of hearing aides and eyeglasses excluded from insurance coverage!🤨

nedmondson · August 9

https://alzconnected.org/discussion/comment/279237#Comment_279237

Good question! I have yet to figure that out. A couple things they list is a dedicated caregiving coach and access to virtual clinicians proficient in dementia care but we are already connected with good resources. This could be useful to someone who does not have access to resources. I have used the Alzheimer’s Association to get a lot of help and I participate in an Alzheimer's support group.

Guide does not provide respite care benefits for patients with mild dementia

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