Diagnosis pre or post ALF

lanie68ny

Question, I am currently looking for an ALF for mom. I don't have any formal diagnosis yet for Dementia. She definitely has a memory problem and her sister has Alzhiemers. I am told to wait to get diag until after she is housed. Thoughts?

Quilting brings calm

I don’t understand why -unless people think ALF’s will turn her away with that diagnosis. Which is possible for certain ALF’s. However, most ALF’s conduct their own interview with a potential resident and decide if they are within the care parameters from that along with a medical statement from the PCP. ALFs are perfectly capable of dealing with someone with a mild dementia diagnosis. It’s when they get into the moderate stage that MCs become necessary.

Marta

You were told to wait by whom? And what was the rationale?

terei

Behaviors will dictate what level of care they need. A diagnosis will not change behaviors unless the condition is actually a medical issue that can be significantly improved by treatment and not actually dementia which is going to be progressive regardless whether they are treated or not. I would not wait for a diagnosis to start searching for a facility based on how the PWD is presenting.

harshedbuzz

@lanie68ny

Unless she has a springing POA that requires a doctor's signature to activate, you can work on both tasks at the same time. In any case, you will need a POA or guardianship for placement, so you may need to prioritize seeing an elder law attorney.

Has her PCP at least ruled out other, potentially treatable conditions that mimic dementia? If not, that's a priority. My dad had mixed dementia, and one was somewhat treatable. I recently noticed memory issues in mom and it turns out she has Lyme Disease which may or may not be causing this. I am currently on a 3-month long waiting list for a scheduling call from the memory center for an appointment 6-months from that. In your shoes, I would be working on all 3 issues simultaneously.

HB

lanie68ny

https://alzconnected.org/discussion/comment/212470#Comment_212470

One ALF told me that. They said if I have Diagnosed first I won't have a choice where she goes, even if she is capable of an ALF.

fmb

@lanie68ny You may want to contact other ALFs. Some facilities are set up to provide strictly hospitality services only and cannot handle residents with greater needs. I can assure you that there are ALFs that accept residents with diagnosed ALZ and other forms of dementia. My DH was accepted with a Moderate Dementia-Alzheimer's diagnosis along with stroke damage and congestive heart failure. At that time (6-1/2 mos. ago) he was a 2-person transfer, could communicate and participate in activities, and could feed himself. I enrolled him in hospice care the day he was admitted to the ALF. The ALF that accepted him has a base room fee per month with five additional levels of care (at increasing additional fees). He is currently in Level 4 in their system. He now has Stage 7 ALZ, is receiving hospice care, has an indwelling urinary catheter, and requires hand feeding, a Broda chair and a Hoyer lift.

Marta

Lanie : what you were told is likely specific to that particular ALF. I have successfully placed PWD in AL for a time, until their needs exceeded what ALF could deliver ( safety when the PWD wanders).

H1235

If an AL facility does not want to accept a lo because the are diagnosed with dementia and you believe that will eventually be the diagnosis, then it seem like that would not be the correct placement for your lo anyway. My thought is you would want to be up front and make sure your lo is in a place that can not only meet their needs now, but in the future as much as possible. Getting a lo all settled in only to have to move them when they need a bit more assistance doesn’t make sense to me. At some point it it may be necessary to step up to mc, but even then it is nicer if the same facility has a mc wing. Good luck.

harshedbuzz

@lanie68ny

Chug makes some excellent points. Placement is almost a dark art— getting the best fit out of the gate can be challenging for a number of reasons. Some common sticking points—

Most families look lovingly at their PWD with rose-colored glasses strapped firmly in place. As a result, they tend to minimize their LO's need to be placed at a level to support them at their worst and instead opt for a more aspirational level where their LO might be OK on a good day.

Many facilities that offer both AL and MC, play into the above by offering family AL knowing full well that the PWD will "fail" and be transferred to their MC side within 4 to 6 weeks. If you really want to try AL, be sure to tour the MC side and make sure you're happy with it as odds are your LO will move there sooner rather than later.

Also related to the first point, many quality MCFs that allow a PWD to age-in-place which translates to "live here, with increasing support, until they pass". This means, you will be touring a community where you will see many residents who have progressed further in the disease than where your LO is at the moment which is hard to see. You should also ask at what point family would be asked to add additional private aides.

Flexibility is often the mark of a good facility. My aunt's MCF allowed her to spend a lot of the day with the AL residents engaging in their activities and trips. She was pleasant and quite social but needed considerable help with ADLs because of a stroke so she got the care level she needed with the socialization that was more appropriate for her.

HB