GUIDE Program - Experiences?

Lazuza · July 16

Good day,

I am the caregiver for someone with Alzheimer's. My LO's care provider has enrolled her in the Medicare GUIDE program, which is supposed to provide intensive case management to individuals with dementia who reside at home. Does anyone have experience with this program? Can you share what the program has done for you?

In my experience, the particular health system we deal with (Mass General Brigham) hasn’t quite lived up to its reputation. They tend to prioritize services that generate significant revenue for the system, and as I see it, this program now allows them to massively bill Medicare for a monthly phone call with us. We’ve also been informed that the “free respite care” advertised with the program doesn’t actually apply in Massachusetts, since local costs exceed what Medicare reimburses. So, I don't really understand what good this will do for us.

harshedbuzz · July 16

Is your LO being seen at a large Memory Center at Mass General Bingham? If so, they may have an attached social worker you can discuss this with. Perhaps there are other benefits available to you that they can help you access. If not, I'd be inclined to decline the services as they don't bring anything to the party.

HB

jen ht · July 16

Hi Lazuza,

I think I may have also gotten a call from these folks. I'm not sure, but there was something recently offered at the beginning of this month. Guiding an Improved Dementia Experience (GUIDE) is what I looked up (google) to learn more. It is a bit odd in that the call sounds like a telemarketer initially. My LO would not qualify as he lives in MC, so I did not pursue further understanding.

Wishing you well,

Jen HT

Phoenix1966 · July 17

GUIDE is a brand new program that began on July 1st of this year. Here’s a link to the government site that explains the program somewhat:

GUIDE overview

And

https://www.dementiacareaware.org/guidemodel/

ARIL · July 17

Interesting, I hadn’t heard of this. Looks like it’s one year old, having begun July 1, 2024.

harshedbuzz · July 17

Here's a link to a previous post discussing the program.

https://alzconnected.org/discussion/73213/guide-program-medicare-medicaid

JDancer · July 17

My husband has a Medicare Advantage Plan, so he doesn't qualify for GUIDE. If Ithought it would be helpful, I'd change his Medicare plan

I see they offer "case management" and "support". What is that exactly? I want soemone to show up at my house so I can leave for a few hours… or a place he can stay for a few days. I don't want someone to talk to on the phone.

Bluebird · July 18

My DH just had his yearly appointment with his neurologist this week and they spoke to me about the GUIDE program. We haven’t signed up yet but what the doctors office told me is, it’s a federal program for people who have Medicare but not the advantage plan. It will pay for $2500 per year for either respite care, in home care or adult daycare. The government contracts with a few companies in different cities who oversee the program. In my city there are 4 companies who are overseeing the program. Each company seems to only handle one part of the program. So if you want respite you contact one of the companies, if you want daycare you contact another one of the companies. Each company contracts with one or two places for the type of care a PWD family wants. In my city only one of the companies handle daycare and they only have a contract with one adult daycare center so, if you want daycare you have to use that daycare center. The government will then pay $2500 toward the cost but the family is responsible for any cost above the $2500. In my case daycare, for a year, cost around $10,000 for 2 days a week. The government would pay $2500 toward that and I would need to pay the remaining $7500.

I checked about respite and there was one company handling respite and they had a contract with one rehab center so that’s the center I would have to use.

If the program offers anything else I was not told about it.

The PWD must still be living at home and not be on Hospice.

Lazuza · July 18

Thanks all! Yes, I had access to the information that was available online, including what Medicare says about the program. However, there are people on Reddit with very negative things to say about it and I was wondering if anyone here has first hand experience. Basically, people are saying that it's not particularly helpful. That the case managers at many sites have zero experience in dementia care. That they call every now and then but that's about it. Most people are disappointed in not getting significant respite care or support from case managers knowledgeable about dementia care.

I was told by our GUIDE case manager that our site is looking for options for respite care because the $2500 really isn't enough for respite care in our state. I was not told the money could be used towards a day program. Unfortunately, day programs in Eastern Massachusetts enroll de facto based on ethnicity with the centers using language (usually Russian or a Chinese dialect(s)) as excluding factors for other participants. There's just one in the Boston area that serves English language clients and frankly they are VERY hard to work with. Many of the young staffers are hired due to their own mental difficulties and their supervision is rather weak, which caused a lot of problems. When I ran into trouble with one of the staffers being inappropriate, it took months for her supervisor to return my calls. Day programs here cost about $150 a day with transportation, so the GUIDE money is a drop in the bucket.

I was asked questions about in-home PT. Our GUIDE site is a hospital where my LO was previously admitted. LO is now seen there as an OP. Frankly, the hospital SWs previously did absolutely nothing in terms of connecting my LO with a day program, in-home PT, etc., upon discharge as they said they would when she was admitted. I would think PT, even in-home, is covered by insurance, so I hope the plan isn't to use the GUIDE money for that. I hope we get a say in what service, of those covered, the GUIDE funds are used for.

We were just enrolled in the program. If anyone is interested, I'll post about my experiences when anything significant happens.

Bluebird · July 19

https://alzconnected.org/discussion/comment/248424#Comment_248424

I would like to hear about your experience. I haven’t decided if we’ll use the program or not. If we do it will be for daycare. Luckily in my area the day my DH would be required to use is one of the best available.

etinklen · July 20

Hello, I am with Bright Star Care, we provide the Guide program in the Houston Texas area. We have staff come to the home to provide respite care. It isn't just a phone call as is mentioned in several post here.

Lazuza · July 23

Nothing useful…yet. Just a lot of meetings - that our heath system is billing Medicare for (b/c they have us go through the entire check-in process that we would for any doctor's appointment, including notification that they will be billing Medicare).

There will have been at least six meetings before we will be considered fully enrolled - psychiatric assessment, social work "assessment", home "assessment", introduction to program, home "assessment" debrief, and care plan meeting.

Again, we don't have in-home respite care available in our area because the local costs far exceed the $2500 allotted by Medicare.

In thinking about this, I'm wondering if it's just a way for Medicare to have more accurate documentation of a person assets and mental status. So far, I'm otherwise not seeing the point, but to be continued…

harshedbuzz · July 27

I got a message from the local Alz Assn forwarded to me by the moderator from the support group mom and I attended when dad was still alive.

The memory center where dad was seen is one of 330 in the country chosen by CMS to participate. I suppose the PWD would need to be a patient at one of these selected centers. Since the introduction of the infusion medications, the wait list to be seen at this service has gone from 6 months to well over a year. I'm on the list to schedule an eval for my mom since last May and so far, [crickets]. I imagine the desirability of this program will only makes the waits to be seen longer.

https://pennmemorycenter.org/guide/

Mom has an excellent MAP through her retirement plan, so this wouldn't apply to her anyway.

HB

Lazuza · August 8

Hi harshedbuzz! My LO is also seen by the Penn Memory Center. We were unable to connect with a competent neurology provider in the Boston area. Here, Mass General Brigham was telling patients that unless they have a condition of "clinical or research interest", their health system cannot assist at this time. So, I drive my LO the 300 miles twice a year to be seen there.

At Penn, the worst part is actually getting to a scheduler. They are weird in that you have to wait several months just to schedule the appointment but the wait time wasn't nearly as long as expected after that.

The physicians at Penn Memory are so-so but they have a dedicated social worker in the Memory Center, Leah, who will make your life significantly easier if you ever need forms completed or any kind of social work assistance really.

Dunno about the quality of GUIDE at Penn but I'm guessing it's decent. Pre-GUIDE, they devoted more resources to social work than most memory care centers where my LO has been seen.

Lazuza · September 23

Finding GUIDE problematic. Wondering if anyone who works for a GUIDE site can comment on the actual purpose of this program. Is it to "contain costs"…via stopping patients from seeing their providers?

I requested an appointment with my loved one's geriatric psych NP at an MGH facility re filling out some forms. I sent the request to the NP via MGH's portal. A GUIDE social worker subsequently replied to the message and stated that the unseen forms were better completed by a "specialist".

What is a geriatric psych NP if not a specialist?

MGH has been paid by the government to visit our home and do countless other assessments for GUIDE. My loved one's geriatric psych NP is the practitioner most familiar with her and her symptoms. I am very unclear on why they want someone else to complete these unseen forms (so, they have no idea what information is being requested on the forms or what credentials are permitted to complete them).

We also needed a refill of my loved one's antipsychotic medication, which was requested through the MGH portal. They neglected to address it for more than three weeks. If we had been waiting for them, my loved one would have been hospitalized. Thank goodness my loved one's geriatrician refilled the medication.

Frankly, if MGH isn't making money or conducting research from "care", they don't provide it. (I put care in quotes because their research seems unethical. E.g., ECT for Alzheimer's.) That is my impression of them and GUIDE is frankly solidifying that.

In any case, is part of GUIDE's MO to stop what health systems deem unnecessary visits?

towhee · September 28

Sorry to hear this does not seem to be working out.

GUIDE Program - Experiences?

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