A few questions on the benefits of Continuing Care

Jerome Likes Pie

Hi All,

We have been evaluating, touring and interviewing various MC's for our LO, who has stage 4 (with signs of stage 5) Alzheimer's.

I understand the benefits of a MC facility also having LT Care, but what is the difference between LT Care and LT Memory Care?  Is LT Care usually sufficient for an Alzheimer's resident or is LT Memory Care much more beneficial?

Lastly, most of the AL/MC facilities that we are touring, etc. do not have continuous care, but they do promote having the Alzheimer's resident able to live out the rest of their life in MC via in-house hospice care, etc.  Is this practical, or should I be prepared to move my LO to a LT Care (or LT Memory Care) down the road in this case?

Thank you kindly,

Pie

harshedbuzz

JLP-

I'm a little confused by your terminology which can vary a bit depending on where you are. 

LT is "long term", no? To me that seems like more of an umbrella term that could mean AL, PC, MC or even SN. 

It sounds, to my ear, as if you are weighing the appropriateness of hospitality-model AL, personal-care and memory care as a care setting. 

A PWD at stage 4-5 is unlikely to be successful in a strictly hospitality-model AL which is intended for someone who might need assistance related to frailty but can get to meals, appointments and organize their lives unprompted. My aunt was placed in AL because her at-home caregiver had scaffolded for her so well. It went very badly. She missed meals because she couldn't track time and the facility assumed she'd gone out for lunch or made her own breakfast in her apartment. Other residents quickly figured out that she couldn't keep up cognitively with mealtime conversation or the group activities and shunned her. A few ladies even kind of bullied her when she tried to sit at their table. 

Personal Care is a kind of place between AL and SNF for people who have not have a cognitive. This is a more hands-on care approach but intended for someone whose body has failed them rather than their mind. Often these are people with mobility issues. Like those in AL, these folks are free to come and go at will. 

MC overlaps PC to a large degree, but the care there should be dementia-informed. Staff should know and use validation and redirection strategies and activities should be engaging and approachable for people who have had a cognitive shift.

For a PWD in stage 5, a secure (locked to prevent elopement) MCF is the safest choice. Three concepts many here quote in your circumstances--

1. A PWD is in the latest stage for which they have symptoms/behaviors. If your mom was a solid stage 4 in September 2020 but now has a new symptom seen in stage 5 (assuming no UTI, hospitalization or other temporary issue) then they would be considered stage 5 now. 

2. Many PWD seem to straddle stages. Sometimes PWD have good days and bad. Others are much more functional earlier in the day and seem very different in the evenings or overnight. The take-away is that care needs to be matched to the needs of the PWD at their very worst and that's probably going to be a MCF.

3. And the third old saw is this-- by the time a family is willing to consider AL, that ship has sailed and the PWD is better suited to MC.

Most MCF will allow a PWD to age in place. That said, there is an expectation that additional help will be provided by family. This might be a private duty aide who comes to care for the PWD or hospice services. Sometimes both. 

It's also possible that some medical event could transpire that would make a SNF a better choice either temporarily or until the end of life. My dad was able to die in his MCF. He managed to die 12 hours before he was to be evaluated for hospice services.

My aunts both transferred to a SNF. The aunt who was in AL broke a hip/wrist and wasn't found for about 12 hours (they do 2 x daily well checks at this one) ended up in the hospital and then a SNF until she passed. Even in a SNF, help had to be brought in as she wasn't supposed to get out of bed and kept removing her soft cast. My other aunt was moved by her guardian to a SN unit in the same building as the MC she'd been in for 5 years. She needed more hands on care vs prompting for things like tooth-brushing and financially it made sense to pay the facility rather than bring in 2 additional aides daily. The CCRC was great-- they still brought her to the MC floor during the day for activities, outings and lunch/dinner. 

HTH-

HB

towhee

Jerome, I am going to assume that when you are talking about LT care you mean a nursing home or SNF. Whether you eventually need one of those will depend one your LOs physical issues and how much the MC is set up to do. One major dividing line is transfers from bed to wheelchair when your LO has trouble walking. When they start to need more than one person assistance some MCs will not keep them, even though they might say they will. Check to see if the MC uses a sit to stand lift, and (this is rare, a hoyer lift). Another dividing line is dietary needs, not that many MCs are set up to do pureed foods for example. Anything that requires a nurse like a catheter or feeding tube usually requires a SNF.

Be careful of sales pitches, they can promise what they can not always deliver.

A SNF attached to memory care might not be of the same quality, check them out separately.

Jerome Likes Pie

Thank you very much for the responses!

Yes, LT is Long term.  My apologies as I have been taught not to use the term, "nursing home," but yes, LT Care is the same as SNF, or a nursing home facility.  Memory Care (MC) is definitely the correct choice now for my LO, but I am trying to get a feel how important having the same facility offer SNF, and some SNF's apparently offer skilled nursing care specific to memory care.  However, it seems that all SNF residents regardless of the disease get put into a SNF.  I just want to be sure that in each facility, the care staff has been properly trained in Alzheimer's, whether it is a MC or SNF.  I hope this makes better sense.

As a side note, I have read a lot of comments on here about being suspicious of those facilities that have a strong marketing and sales presence, promote their amenities more than their quality of care, etc. and I totally agree, but for some reason these types of facilities seem to have better caregiver staff to resident ratios than the less nicer places (5:1 vs 8:1).  What's more important? The ratio or the quality of staff and turnover?  I know... BOTH!

harshedbuzz

Jerome Likes Pie wrote:

I am trying to get a feel how important having the same facility offer SNF, and some SNF's apparently offer skilled nursing care specific to memory care. 

The more important piece is that the quality of the care in each place. I live in a community that is ridiculously well served in terms of care facilities. I drove past a dozen places on my way to see dad when he was in care and they've built 2 more since he died. IME, care facilities are a bit like hospitals in that some are terrific at one thing and not so hot at others. Just as you might not select the same hospital to deliver a baby as you would for a new knee, some care communities rock hospice, while others are better at rehab and some do assisted living as their strong suit. 

Unless you will be locked into Medicaid down the line, it would be better to tour both sides and make a choice. It's always a good idea to know which 3 SNFs you prefer in the event of a hospital discharge to rehab anyway. If down the line you decide to transfer to a SNF, you should re-tour your top choices to make sure they're still good. These places often change hands or management and can change drastically in a short time. 

However, it seems that all SNF residents regardless of the disease get put into a SNF. 

That is generally the case. I toured over a dozen places and only one had a dedicated dementia SNF. This was, in part, because my state does not allow Medicaid to fund MC, so those who have spent down in their regular MC unit are turfed to the Memory SNF. Since they expect 2-3 years of self-pay at this facility, most PWD do qualify for a bed in SN. Ironically, this was mom's first choice and they declined to offer dad enrollment based on the potential for behaviors associated with his diagnosis. 

I just want to be sure that in each facility, the care staff has been properly trained in Alzheimer's, whether it is a MC or SNF.  I hope this makes better sense.

This will not necessarily be the case. In fact, many aides opt choose SN rather than MC because it suits their temperaments and talents so you can end up with someone not trained around dementia who would rather be doing rehab care. That said, by the later stages of the disease when the PWD is non-ambulatory and non-verbal, dementia-informed care may be less needed.

As a side note, I have read a lot of comments on here about being suspicious of those facilities that have a strong marketing and sales presence, promote their amenities more than their quality of care, etc. and I totally agree, but for some reason these types of facilities seem to have better caregiver staff to resident ratios than the less nicer places (5:1 vs 8:1).  What's more important? The ratio or the quality of staff and turnover?  I know... BOTH!

It's all important. 

When they give you a resident to staff ratio, it's important to know how they're counting. Is it 5 residents/1 aide each shift? Or are they including building maintenance, kitchen and serving staff, the DON, sales manager, the lady who answers the phones? Did you do a head-count? Sometimes they will report ideal staffing and not what they are able to provide in Covid-times.

HB

May flowers

You have a lot of good feedback here, I would add that we were sold on the end of life care (with hospice). We expected after my FIL’s fall and surgery he would be able to return to MC and could except they told us would have to hire a 24/7 aide to keep an eye on him as he was trying to walk unassisted after surgery. So that was cost of an aide on top of the cost of the facility.

So that was the fine print we did not know, that if a resident needs constant watching (1:1) they are not able to do that. 

harshedbuzz

May flowers wrote:

So that was the fine print we did not know, that if a resident needs constant watching (1:1) they are not able to do that. 

We had this even in the SNF after my aunt broke her hip. Since my aunt had few assets, her daughter, son's widow and 83 year old sister took turns as sitters hiring a few shifts every week.

When we got the contract from the MCF, most CELA read it and explained concerns she had so we understood everything.

MN Chickadee

This varies by company and state, the terms do not always mean the same thing. It is best to individually quiz each MC facility on how well they can accommodate late stage dementia. In my area most stand alone memory care facilities can keep the person from mid stages until their death with the normal progression of dementia. Some MC have a registered nurse on 24/7, some only have them during business hours and aides are the only ones there at night. The reasons a resident could not stay in MC, and have to go to a skilled nursing facility, often involve complex medical needs where they need 24/7 medical care. There is a cost difference, SNF is more expensive due to it being higher acuity, higher nursing ratios etc. Sometimes, in some areas, only SNF take Medicaid and MC does not so when a person is getting low on money to self pay they move to SNF. Some SNF can be a bit more "nursing home" like, institutional and less homey than MC but again lots of variables. I have seen some really good SNF that were very comfortable and home like. And of course there are bad ones.  This skilled nursing is sometimes but not always required in the dementia progression. Often the person needs dementia care but not necessarily a SNF. My mother stayed in regular memory care until the end. Their staff were trained at doing the things a PWD needs in late stage, such as changing, cleaning and turning a bed ridden person, watching for bed sores, spoon feeding etc. They had RNs on round the clock to oversee care. Hospice came in to support the end of life needs. I would say a majority of the residents stayed there until the end, a few moved to SNF. So it depends on the physical health of your LO, which can of course change unexpectedly. Either way it is good to have a SNF chosen in case you need it eventually. You will want to tour and ask around for recommendations.

Jerome Likes Pie

Thank you so much for all of the wisdom shared.  Much appreciated!

Pie