Forks in the road of levels of care

Welcome back to episode three, Ask Dr. Mia: the aging well podcast. Today, I'm going to tell you about a story of a patient of mine who I initially met in  memory clinic. 

Ms. Smith is a lady who is almost 80. She's celebrating her birthday coming up next month. When I initially met her, she came with her daughter because she was worried about her memory. She has been diagnosed with Parkinson's for quite a few years now and uses a walker to walk around. 

But is living independently, has noticed some short-term memory problems when she initially came to see me. I diagnosed her with mild cognitive impairment, which means that she had a little bit of memory problems that I don't think it's just due to her age, but she does not have dementia. When I say dementia, I mean that someone's functional limitations in daily life, such as managing their medications, paying their bills, filing for taxes, driving are affected as a result of their cognitive impairment. Ms. Smith did not have any of that. But she did have some short-term memory problems. She didn't necessarily remember where she put her glasses and her purse. And sometimes she got appointments mixed up going to the doctors. 

There are many different domains of memory that I may cover at  a future episode. But for today let's focus on Ms. Smith who has some short-term memory problems. Her daughter lived close by and she also has another son. She enjoys knitting and watching her grandchildren. I told her at the end of my visit that the best things to keep her mind healthy are the things that keep her heart healthy and her overall health well, meaning engaging in physical activity, staying socially engaged, doing cognitively challenging things to enjoy. There is no specific puzzle or crossword puzzles that has to be done or has been shown to be beneficial for someone's memory, but you should do things that you enjoy, because those are the things that you're most likely to continue to do.  As people  have memory problems, sometimes they're more withdrawn socially. That is something where I really try to encourage people to push past that initial hesitancy because conversing and socializing with other people is also good for one's brain. 

A couple of months after I saw Ms. Smith, her daughter contacted me to let me know that her mother had a fall. Unfortunately she tripped in her garage when she was walking to get something from the freezer in the garage and she did not have her walker with her. She did not think that she needed her walker since she was just going to the garage. 

But this fall, unfortunately gave her a broken wrist.  She had to come to the hospital. The surgeons looked at her wrist and examined her, did not think that she needed surgery, but she was in so much pain that she cannot just go home. So she was admitted to an inpatient floor, a medicine floor, where she was treated for her pain and she was evaluated by the hospital physical therapist and occupational therapist in the context of her Parkinson's disease and this new wrist fracture. Unfortunately on the second night of her hospitalization, she got very confused. She did not recognize her daughter. She thought that there were strange men in her room trying to hurt her. She became very agitated when nurses were trying to calm her down. She received some medications to help calm her down, but she really was in a state called delirium. Delirium is a common, but under recognized condition when older adults get into the hospital and it is associated with a lot of bad things down the line. 

When we originally thought of delirium, we thought of it as something that is temporary and will go away once people are back to their normal environment, or had underlying reasons solved, such as their pain or an infection. But we now know with more research that people who are at risk for delirium oftentimes have some underlying memory problems like Ms. Smith, but they also have a higher likelihood of having permanent memory problems after getting through an episode of delirium in the hospital. 

Unfortunately for Ms. Smith, she was not able to go back home even after her pain was controlled, partly because her broken wrist was on her dominant hand, her right hand.  She really needed to go to a rehab facility to learn how to walk with her walker again.  This is where her daughter reached out to me to help provide some guidance as to what to do. 

For those who don't know, sometimes a rehab facility is called a skill nursing facility, which is a term that may be used interchangeably with nursing home but it is not the same. A skilled nursing facility may be one portion of a nursing facility or retirement community. 

And that's a unit where there is around the clock nursing help: the skilled part of skilled nursing facility. But they also have physical therapy, occupational therapist, speech therapist, who can help people regain their function to hopefully back to independent living. A skilled nursing facility is a common place where older adults have to go after an hospital stay because they may be weakened from being in the hospital and need an extra time to recuperate. Medicare covers for skilled nursing facility, but there are the rules that oftentimes can be quite complex.

If someone were to have just regular Medicare, Medicare will cover the first 20 days in a skilled nursing facility completely. But after that first 20 days, the patient and their family oftentimes have a 20% copay. Each night in a nursing. In a skilled nursing facility oftentimes cost $500-600 per night, which is more expensive than many five star hotels. So even 20% of $500 can be a substantial amount of money for most older adults who have a limited income.  This is why oftentimes after three weeks patients who may not be fully ready to leave, the skilled nursing facility for rehab are still discharged home or discharged to a family member's home because they're unable to afford the copay that's associated with continued stay. Some people have additional supplemental insurance in addition to Medicare that may cover their full cost. 

I saw Ms. Smith a few weeks after she returned home. She still needed more help even after she returned home.  Her daughter had to reduce her time at work to help stay with her mom.  Her daughter was concerned because her mom's memory, unfortunately never got back to where it was before the hospitalization. In contrast to when I originally saw her in memory clinic when she only had short-term memory problems, now she's having really functional changes in her life, such as having difficulty following recipe to make herself meals. She was getting confused with her medications and needed reminders to take them. She was still walking with a walker, but her wrist was in the process of healing, so she really couldn't put as much weight on it as she wanted to. All of these things have made it tremendously stressful, not only for Ms. Smith, but also for her family. 

 This is the stage when Ms. Smith's daughter reached out to me again to ask where she could find help for her mom. Because Ms. Smith's daughter only has a limited amount of FMLA and she needed to return to work shortly. This is where a lot of families are surprised to find out that Medicare does not cover for assisted living or long-term care in a nursing home. 

Assisted living is usually for folks who need some assistance with what's called instrumental activities of daily living. These are the higher order things that we need to do to be able to live independently. These are skills that we hopefully learned as a teenager or early in our college years: learning to cook, learning to pay our bills, learning to drive, medication management as part of that especially as people get older and have more and more complex medication regimens.   Most assisted livings also offer help with bathing. 

When people get to a stage where they need hands-on help, meaning they need another person to help them walk in addition to some sort of assisted device, like a cane or a walker, or a rollator or that they need help with transferring, going from bed to chair or chair to standing, or if they need help with toileting, those are nursing home levels of services that are needed. In our country in the United States, most long-term care nursing home beds are covered by Medicaid, which is a  state funded insurance for the poor. 

 Most older adults I take care of are too rich to qualify for Medicaid, which are state dependent, depending on where you live in the United States. Some states have more relaxed financial eligibility for Medicaid.  Usually this is based on the federal poverty level. Some states are more stringent in terms of their Medicare requirements. If one is poor enough to qualify for Medicaid, then they oftentimes can get subsidized payment of in-home care aides. These are usually contracted through a number of different home care agencies. This is where if you needed someone for grandma or mom to stay with her for a couple hours today, make sure she eats, cook her meal, do some light house working and possibly reminding her to take her medicines. This is what Medicaid can provide. When people get to needing more assistance, that's when even a couple hours of in-home aide may not be sufficient. This is when families really have to consider whether to permanently move into a facility. Unfortunately, neither Medicare nor Medicaid really covers for assisted living.  The price for assisted living can really differ depending on where you are or the type of facility that you're interested in. Right now at the time of this recording and July, 2022, assisted livings can cost anywhere from $3-4,000 to $8,000 per month  . And if people have additional needs in terms of cognitive impairment sometimes they also need to be considered for a special unit called memory care. 

Memory care in most facilities is a mix between assisted living and long-term care. As people have dementia and functional changes as a result of their cognition, they oftentimes need assistance in all of their activities.  As their dementia progresses, they need more hands-on care. The big difference between memory care and assisted living is that the memory care unit typically has a locked door so that the residents cannot just walk out.  Because of memory care having hopefully closer supervision for folks with dementia, it is oftentimes more expensive than regular assisted living. 

All of these different services and insurances can be tremendously challenging for patients, their families, and even myself to navigate because each person's insurance may differ and there is not much transparency in what each person's individual insurance will or will not cover. In Ms. Smith's case, she really was not making enough progress with living independently without her daughter's help. But she  could not afford to move into an assisted living, which was going to cost her about $4,000 a month. She was in the spot where most of my patients live, where they're too rich for Medicaid eligibility in our state, but not rich enough to pay out of pocket for assisted living. This is where I offered for her daughter to consider hiring in home help. These are home care agencies located throughout the country oftentimes these are either chains that operate in multiple cities, or they could be individual private businesses that hire mostly women of color to provide in-home help. 

The average costs per hour for home care aids can also vary significantly. They could be as low as $20 an hour to much higher than that, depending on the need of the client and how many people are available in that specific area.

If I have not thoroughly confused you about all the different levels of care, you can look on elder care.gov. It is a free government associated website where you can type in your specific zip code and it will pull up the local Area Agency on Aging (AAA). These are federally funded nonprofit organizations that help people navigate their local resources. Oftentimes these elder care agencies have a specific  phone number where I encourage people to call.  Oftentimes you will be able to speak with  someone directly and tell them what sort of services you're looking for. For example, one of the nonprofits senior organizations in our area offer a voucher for patients who might be just a little bit above the eligibility financially for Medicare but really cannot afford to pay for out of pocket home aides that are 20, $25 an hour. They have a voucher program where they subsidize some of that funding and hopefully help people stay at home. That's just one example of what may be possible in your local nonprofit focused on older adults. 

 I will put these websites and additional links in the show notes. There may also be geriatric care navigators in your local area, these are oftentimes nurses or social workers who are either part of a larger organization or part of their own practice to help families and patients navigate the system. 

Sometimes calling specific facilities that are nearby in your local area and asked to speak with the admissions liaison.  You can get more specific information about the eligibility or the waiting list in to that specific facility. At the end of a skilled nursing facility stay, there are discharge planning social workers who can also help families transition: say if they were not able to return back to their own home independently. 

One other financial related thing is that if people were to need a significant number of hours of assistance at home, but they're not able to meet the medical or the financial needs of staying in a skilled nursing facility, oftentimes they could be entered into a spending down process with an assisted living. Meaning that they transition their assets, oftentimes their house into possession of the assisted living and spend down the value of their home until their assets are gone. And then they become eligible for the financial eligibility of Medicaid. 

Some people may ask me about a long-term care insurance, I would say those policies can vary widely and sometimes the amount of coverage may not be sufficient for what people actually need.  You might have to look at the specific policies for long-term care to really determine what is needed. So for example, if the cost of a paid home aids were $20 an hour, having 24 hour care at home would cost $480 at day. And then multiply that by 30 days,  which sometimes maybe as extensive as $24,000 a month, which is substantially more than if someone were to just move into a assisted living or nursing home environment. 

 I hope this story of Ms. Smith help demonstrate the common different levels of care that older adults may encounter as they move through the healthcare system, and illustrate some of the crucial forks in the road. Families and patients are surprised about is one, how much Medicare does not cover for what Medicare considers to be custodial care. Those are the type of care that people need  without having a nursing license. This might be satisfied by someone in the community or their family in terms of making meals, helping them get dressed, going to the toilet. These are very needed and very challenging hands-on tasks that are crucial to help people remain at home, but this is where the gaps in  Medicare coverage lies. And also where some of the recent states' efforts to expand Medicaid may be particularly relevant to older adults in your life.